October 1998

Hi Everyone. I have written to you with regard to writing a monthly-ish newsletter, and as you have responded so well to the idea, I am now putting it into practice. Firstly, I hope this finds you in reasonable health? I am OK except for my diabetic control. It seems to be doing what it wants to lately, but no doubt it will sort itself out soon. My diabetic consultant attended a BDA conference last week and gave a talk about SMS. I was videod with and without diazepam. It was to be shown at the presentation. I have to say without any doubt, I would rather be videod with diazepam than without... It was quite shocking to see how much I deteriorated in the four days without it. Hopefully, diabetologists will now be aware of the link between diabetes and SMS — perhaps the next time you visit your diabetic consultant you could ask him if he/she attended the conference, and what he/she thought of the presentation. I have also made progress with the CVS (Council for Voluntary Services). It may be known by a different name in your area. They are a self-help group support agency. They have an intranet service, and I have taken the liberty of putting my name and phone number on their system. It will cover England, Scotland and Northern Ireland, so if any new sufferers contact them, they will at least know they are not alone. My next snippet of information is about my friend Zena. She hails from Minsk, is married to an Englishman and lives a few doors away from me. She went back home during the summer holidays, taking with her as much information about SMS as I could give her. To cut a long story short, she came back with the name of a professor of neurology who, apparently, didn’t bat an eyelid after reading my letter. He is obviously aware of SMS and I have written to him to ask if there is any research being done in Russia, and if there is anything he can tell me that may be useful. I am not sure if or when he will receive the letter (the way things are in Russia at the moment) but I will keep my fingers crossed that I receive a reply. While we were on holiday in August, we called into Barts and met Pam Sawtell. It was nice to meet after having spoken on the phone so often. She showed us around the department and we chatted over a cup of coffee for about an hour. We also called in at Banbury and met Brian, a fellow sufferer, his wife, and their two grandchildren. I was surprised to see how agile he is. He has had SMS for 13 years and is also diabetic. It was a short visit for us, as their family were expected, but thank all for your warm hospitality. Well, I think that’s all for now folks. Please write and let me know if you have anything that may be helpful to the rest of us, or just write back anyway. PS. My tip of the month is exercise. I ride my tricycle twice a day and it does seem to loosen me up a bit. I have to admit, I don’t always feel like it but I usually feel the benefit afterwards. I was given an exercise bike, which I use on a day like today. It’s nice to pedal for 10mins, have a soaky bath and then, if I am lucky Eloise (my nine-year-old), gives me a back massage — heaven.

December 1998

Hi Everyone. Are you all ready for Christmas? Or are you — like me — vowing that next year you will have completed your shopping, written your cards, bought all the non-perishables, remember where in the loft you put the Christmas decorations (and put them within easy reach) etc etc before the end of November? This paragraph is, of course, aimed at the ladies, as the men folk seem to think Christmas is organised by Santa’s fairies. Oops, sorry — I’m sure Brian and Darren are the two exceptions to this worldwide rule!!! Thank you to those who have replied, either by phone or letter, to my last newsletter. It was really nice to hear from you. By the way, you may remember me telling you that my blood glucose control had been very poor. Well, you will be pleased to hear I am now back to normal. The problem was my pen! I now have a new one — so problem solved. There is not much SMS news at the moment. I have not received a reply from Russia as yet, but I am still hopeful. I have had a letter from my diabetic consultant telling me of the interest shown in SMS at the BDA conference. This is an extract from the presentation ‘Stiff Man Syndrome in the diabetes clinic’: “A 46-year-old woman attending the diabetes clinic presented with features of SMS including stiff-legged gait, difficulty in bending and muscle spasms. Apart from increased muscle tone, neurological examination at rest was essentially normal. She had a history of anxiety, and symptoms were initially ascribed to this before the diagnosis was made, based on characteristic features including prominent lumber hyperlordosis...anxiety is increasingly being described in SMS. Spasms, stiffness and the anxiety respond to diazepam...in patients with type 1 diabetes complaining of stiffness, consideration needs to be given to this rare but important diagnosis”. Was this my 15 minutes of fame, and was it Andy Warhol who coined that phrase?. Professor Leslie also spoke at the conference. I would be interested to know which one of us his case study was about. Lastly, one or two of you have asked me for the details of other SMS sufferers. If you have any objection to me giving your name and address please let me know. PS. Tip of the month: Have a great Christmas and save a bit of energy for New Year’s Eve.

February 1999

Dear All. I can hardly believe it’s February already. I hope you all had a good Christmas? We were entertaining nine and also had a New Year party. Mum-in-law cooked for us on New Year’s day, but I was too shattered to go, so Dave brought it home and re-heated it for me — and then I went to bed! I have had a reply from Professor Shanko in Russia. Unfortunately, it didn’t prove very useful. He seemed to be describing something similar, but not SMS. I wonder if something was lost in the translation? I have written again to suggest this may be the case. I have also mentioned the names Moerch and Woltman. Perhaps that may be helpful to him? I mentioned swapping names and details in the last letter, but as not everyone has replied, I thought it would be better if I erred on the side of caution and just gave names and ’phone numbers. I was talking to someone a couple of weeks ago and the subject of disability allowance came up. I am not mentioning this out of a sense of ‘nosiness’, but if anyone has any difficulty claiming, please give me a ring. Lisa, thanks for the card and congratulations on your slow, but steady recovery. Well done. Lucy — and thank you for your letter. I’m pleased the IVIg is helping (fingers crossed). You mentioned in an earlier letter that you were to be included in a book written by Dr Krentz. Have you heard when it is to be published? In answer to your question about my medication, I take 5mgs of diazepam three times a day. I was taking it in the morning, at lunch time and before going to bed. I always seemed to be feeling sluggish by late afternoon, so I changed my lunch time ‘fix’ to early evening. It does seem to have helped. Stephanie — thanks for your card and letters and chats on the ’phone. How are your blood sugars at the moment? Hopefully no more ‘best performance’ hypos!! (don’t worry Steph, the details are safe with me). Talking of hypos, I had my sister, her partner and their daughter over for the weekend and my BM had been low on and off all day on Saturday. I managed to cook our evening meal, but everyone else had to help serve it as I was ‘going off’ again. I had a spoonful of sugar and sat down to eat. I wasn’t aware I was eating so slowly, or that I was swaying, or indeed that I had gravy dribbling out of my mouth. The only thing I was aware of was Dave saying “Lets carry her into the living room.” Anyway, I made a remarkably quick recovery (about 5-10 mins) only to find they were discussing which outcome would have been the funniest — swaying enough to fall off the chair or falling full face into my plate. Honestly, what kind of family do I have? By the way, Stephanie, the stamp you were asking about was one of the January edition of commemorative millennium stamps, representing the age of steam (he was an ugly (expletive) wasn’t he?). Pam Sawtell has given my details to nine other SMS sufferers that she has access to, but I’m afraid I have not heard from any of them. Viv — I was very interested to hear about the advert in your local paper (Telegraph) from someone with SMS. I rang the paper, but both the advertising and features departments couldn’t find anything. Have you heard anything from your friend? It would be such a shame if we don’t find him/her, or rather he/she doesn’t find us. Incidentally, could your friend have seen the advert in a different paper? I was also very interested to learn of your literary skills (Viv has written a piece for Reader’s Digest). Has it been published yet? Viv has been exercising her upper body by pumping iron, well aluminium (to be precise, tins of rice pudding). You were saying you might invest in some dumbells. Why not save money and just buy bigger tins of rice pudding? I’m such a meanie... Anyway good luck with it. On a more serious note, Viv has asked me to ask if anyone suffers any speech loss. Unfortunately, Viv suffers this problem for quite long periods. She also asks about abdominal stiffness. Personally, that was one of my first symptoms, because the abdomen is so rigid it leads to hyperventilating and, as one is not getting the correct balance of oxygen, one becomes dizzy. That, of course, is quite scary, and the vicious circle begins — and doesn’t stop until one can ‘calm down,’ which is not always easy to do. Changing the subject completely, I thought I would tell you about my ‘bargain buy’. It’s a lightweight, strong, fold up, three-legged stool. I bought it locally for the unbelievable price of £3.99. Very handy it is too. Finally, a little quiz for the boys: Can you come up with an alternative name for SMS? The rules are that a) the same initials (SMS) must be used; and b) it has to be amusing. The prize: Darran, if you win, you get all of us to stay with you later in the year so we can see the total eclipse of the sun. Brian, if you win, you get to pick us all up and take us there! If either of you do not take part in this quiz I will make up something horrid about you in the next letter!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I must go now, but hope to hear from you soon. Take care, best wishes.

August 1999

Hi Everyone. I’m sorry it’s been so long, but there has been nothing to write about. Even as I write there is only one bit of real info to share with you. Do you remember I mentioned the video shown at the BDA conference last autumn? Well, a vigilant diabetic specialist nurse attending the conference saw it and noticed similarities with a patient of hers. To cut a long story short, that patient was diagnosed with SMS, contacted me and wants to join our merry little group. Her name is Roma. I am sure she would love to hear from you. Moving on to other things — holidays. I recently took the kids to Spain. I still can’t believe I did it without Dave (well someone has to go to work to pay for it.) We stayed with family, which made life easier. The amazing thing was how my health improved while I was there. I have heard people say the Med is a healthy place to live, but taken it with a pinch of salt. However, I walked more, I swam/swum, I even dived (into the swimming pool obviously). I did draw the line at bungy jumping, though. My back didn’t ache, well not as much, or as often. So, was it the Med, or just in my head? I would be very interested to know your thoughts on this. On to other matters: Thanks to those who replied to my last letter. Brian and Darran, what can I say? I have waited since February for your competition entry suggestions. As neither of you sent in any suggestions I have decided to ban you from any further competitions! Anyway, I had better get going. Please write and let me know if you have anything I can include in the next letter (or I will be boring you silly with things about me). Bye for now. Take care.

December 1999

Hi All. Sorry it’s so late in coming, but as usual December is so hectic. Christopher’s birthday was last week, and for an eight year old I thought he was very clever in the way he conned me into giving him a birthday party. Anyway, it was OK because after the food, cake and ‘Happy Birthday’ song they all disappeared into the loft to either use the Playstation or find any available weapon in Christopher’s bedroom with which to play Romans and Celts (they are learning about them at school) and kill each other. Meanwhile, I was sitting in the kitchen drinking wine! I have got about 3/4 of my Christmas shopping done and I am stuck for ideas for the rest. The next hurdle is the food shopping. I am catering for 10 this year, and having a New Year party. I must be a glutton for punishment, but don’t you agree we have to live life as full as we can, while we can? I for one take every opportunity to do everything I can — if it’s within my capabilities — and usually with help from friends or family. I have started two classes this year — French for beginners and a life drawing class. Touch wood, I have managed pretty well with both. OK, some SMS news now: We have found another member for our group. His name is Mike and he lives about 10 miles from me. We have spoken on the ’phone but have not met up yet. He sounds very knowledgeable about SMS and told me about an organisation in America called NORD (National Organisation for Rare Diseases). I ’phoned them and received the relevant forms to join, so I have sent them back and am awaiting a reply. I will send you any relevant info when I get it. Thank you to those who have replied to the last letter, it really is nice to hear from you. One last thing, my main problem is anxiety. A thought pops into my head eg, “the floor is slippery”, “I am going to drop this” etc, and “it seems to make me freeze with fear”, and “I become really stiff”. Nobody else has mentioned anxiety as being a real and often initial factor in SMS symptoms. Am I the only one? I don’t get spasms, and am usually fine in my own home, but going out alone is getting increasingly difficult. Sorry about the last paragraph, I don’t want to end on a down note so, one last thing (again), have a great Christmas and let’s hope the new millennium brings us improved health and happiness. Best Wishes to you all.

January 2000

Hi Everyone. It’s a little late, but Happy New Year. I hope you all had a good time. I’m not going to tell you about mine, or none of you will ever have anything to do with me again! The first bit of news is about Claire. She is getting married next month. I have forgotten where she said it is to take place except it is somewhere hot, romantic and desert island-ish. I am sure I can speak for all of us in sending our congratulations and best wishes for the future. Since I last wrote to you, we have gained two new members — Michael and John. I was interviewed recently by the Hull Daily Mail, and have enclosed a photocopy (must make a date for a face-lift). I received quite a few calls, one of which was from Michael. We arranged to meet the following day, and have spoken on the ’phone quite a few times since. He is a nice guy with a good sense of humour. I also got a call from a 74-year-old lady who thought she may have SMS, but after talking to her for a while I had to tell her that I thought she probably had a frozen shoulder or a bit of arthritis. She was a real sweetie. Another lady who called me did have some symptoms of SMS and is also diabetic. She is going through the “It’s all in the head” stage (I’m sure you all remember those days). Heather Dixon, who did the interview, is a freelance journalist and used to work with Dave, so we have known her a long time. I thought she did a good job, she didn’t sensationalise SMS or make me out to be a freak. She is now trying to get a national newspaper or magazine interested. It would be great publicity if she can. Now this is where you come in: Heather asked if any of you would like to contribute? I would be grateful if you would let me know ASAP. I know it often an ordeal talking to strangers, but Heather is a warm and understanding person. I have been inundated with calls from a news agency, offering money for the story, but I am determined not to go down that path mainly because I would have no control over what they would write and would prefer it to appear in a quality paper or magazine. I will close now, as I really must start cooking. Hope to hear from you soon. Take care.

May 2000

Hi Everyone. I am trying to think what has happened since I last wrote to you. Firstly, another new member — Kenneth. Also thanks to John, whose tel no I managed to lose. Anyway, he sent it to me again . I don’t know if any of you keep in touch with each other, it would be nice to think you do. Which leads me on nicely to tell you that I have an email address: blows3.freeserve.co.uk so if anyone wants to email me, please do. It will probably be less expensive than ’phoning, as we all know we talk for ages on the ’phone. I will check each Sunday to see if I have any message. (when Dave has shown me how to do it, as I am computer illiterate). Thanks again to everyone who replied to my last letter, and especially to Claire and her new husband Richard for the postcard they sent from Antigua. I have been interviewed again, this time for Best magazine. They said it would be published in June but I haven’t heard anything from them for a while so I will keep an eye open in the supermarket each week. I never buy magazines, so I will just carefully leaf through to see if the article is in. and if it is I will buy it and send you a copy in the next newsletter. Once it has appeared I intend to send a copy to Balance and ask if they will do an article (because of the possible link with diabetes). My diabetic consultant said he would write something for one of the medical journals. I won’t see him for a while but when I do I will ask him if he has been able to get anything published. I have got myself a new neurological consultant. He is knowledgeable, charming and good-looking! What more can anyone want? I asked him a few questions, which he was quite happy to answer: Viv, I’m afraid he doesn’t know of anyone else who suffers with speech loss. Darran, with regard to chemo, apparently unless someone has cancer it can actually cause cancer, I think others who have had chemo have been sufferers of leukaemia or Hodgkin’s disease. I asked him about a possible link with diabetes. He said there is no proven link, but because of the statistics there has to be one! He also said he would pass my name onto any of his SMS patients. I have not heard from anyone as yet, but I guess the guy is very busy so perhaps he has not got round to doing it yet. He started me on baclofen, but to be honest I haven’t really noticed any real difference except that I feel a bit calmer. The anxiety is still ever-present whenever I am faced with anything slightly outside my normal routine, not that it stops me at least trying (Dave says I am very trying...). Last week I had three bad days on the trot and decided to go and see a guy who, although not a faith healer (no religious connotations), works by the laying on of hands. Let’s face it when you are feeling desperate you will try anything. Anyway, I’m not sure what he did or didn’t do, but I when I got home I slept all afternoon and have been my usual self since then. Anyway, it’s probably coincidence. Just back tracking: When I ’phoned for the appointment the guy’s wife answered, I asked to speak to her husband and she replied “fish or healing?” (????), to which I replied “joke or what?” It turned out that he also has a coy farm. Why do these things always happen to me? I think one day I will write a book about all the jokes, faux pas and the like that seem to surround me. I think on that note I will go and do something useful. Take care, best wishes.

October 2000

Hi Everyone. Well, what a busy old time I’ve had recently. I know some of you have seen the article in Best magazine in August but I have enclosed a copy anyway. Although it says, “As told to Heather Dixon,” most of it was written by a journalist at Best magazine. As I said in the last letter, Heather is a trusted friend and would not have written such tacky things as “Luckily we can still manage to make love, though we don’t exactly swing from the chandeliers.” For heavens sake, does anyone really want to know that? I agreed to do that article hoping to raise awareness of SMS. I also wanted to let people know about the support group and to talk about the connection with insulin dependent diabetes. They did neither. As I think I mentioned in an earlier letter, we adopted Eloise and Christopher and for various reasons we changed their names. We also asked them not to print a full-face picture of them, but of course they did, so basically it was a complete waste of time, effort and stress. I wrote a nice letter to their letter’s page, thanking them for printing the article, but reminding them that ‘unfortunately’ they had ‘missed out the two most important points I had wanted to make’ and to their credit they rang and told me they would print my letter (some time in November). The Daily Mail telephoned me after seeing the article in Best and the whole process of interviewing and photographing started again. The only difference was that I simply said, “Before you ask me the questions, let me read you this” (the autobiography thing). It saved a lot of time, but it was still edited quite a bit. However, I was pleased with the results, which leads me on nicely to the fruits reaped from it — we now have eight new diagnosed SMS sufferers! I could not believe the response. The first call I got was on Tuesday (the day of publication) at 9.15am and I didn’t get off the telephone until 11.20pm that night! Wednesday was about the same, Thursday was a little quieter, but even now I am still getting calls. To be honest, it was getting to the point where I was dreading answering the telephone. The only highlights were when someone would say: “I have the same diagnosis as you.” I did wonder if I would get any crank calls from, say, Mel Gibson or George Clooney, saying: “I saw your photo and now I think I am suffering from SMS and would like to meet you” but alas no! However, I did get a call from a faith healer; a guy who thinks a relaxation programme would cure me; another guy who said I should try a gluten free diet; and a lady who said: “You simply must, must, must have your blood tested for trace elements. It will only cost £40, and must be sent to this address” blah blah blah. On a different subject, thanks must go to one of the group members who told me about a TV show in America (I think it is a ‘Richard and Judy’ kind of thing) who were going to do a feature on SMS. I telephoned the station manager and sent a copy of the video that was made of me for the diabetic conference, plus an autobiography from my diagnosis of IDDM onwards. I don’t know if it will be shown, but I was told they would send me a copy of the programme anyway. We’ll see... Anyway, on to the good stuff — new members: Margaret C, Derham, Norfolk; Malcolm B, St Austell, Cornwall; Annette H, Brighton; Jean D, Norwich; Leslie H, Glenrothes, Scotland; Kenneth S, Hasland, Chesterfield; Laurie H, Newcastle; Sharon K, Middleport, Stoke; Margaret B, Bristol. I have given the general area of where people live so you have the option of getting in touch with the people closest to you if you wish. For your information, below is a list of the original members: Michael A, Hull; John B, Birmingham; Lisa C, Bromsgrove; Stephanie H, Birmingham; Lucy H, Shirley, Southampton; Roma H, Cornwall; Claire K, Whitstable, Kent; Brian M, Banbury, Oxford; Viv M, Littleover, Derby; Darran T, Paignton, Devon; Mike T, South Cave, E.Yorks. Including me, that makes 22 of us! I had an interesting call from Claire this week. Her consultant neurologist would like the names and addresses of all our neurologists. He wants to collate information about us all so please ring Claire asap and she will explain. One thing I am sure of is that it will be beneficial to any research that may be done into SMS, so I urge you to call Claire with your details. Most of you have also been involved in Professor Leslie’s research programme, and he is about to do further work, so will you all contact Pam Sawtell (Professor Leslie’s research nurse) at St Bartholomew’s Hospital, West Smithfield, London, EC1. Again, please remember it is important that they get as much information as possible from us all. The more they know about us, the more they can do. Finally, two corrections to the last letter. Firstly, I gave you a wrong email address. Secondly, it should have been Koi, not coy (a deliberate mistake to fool you all!). I am sure there is much more I could write about at the moment, but I am getting brain ache, so I will sign off for now. Take care.

February 2001

Dear All. My apologies as usual for being so long in getting in touch. Anyway, I hope you all had a good Christmas and New Year. I, of course, did not have too much to drink at our New Year party. Having said that, when our next door neighbours told me a few days later how much they enjoyed it, I had to pretend I had remembered they had actually been here (gulp). Christopher danced all night, dressed in shorts, a Subaru t-shirt and sunglasses. I don’t know what time the party finished as I went to bed at 1.30am. Thank you for all the Christmas cards and the messages in them — it’s really nice to know my efforts are appreciated. Did you all receive a questionnaire from Dr Gerschlager at Queens Square? I rang him after I received mine to tell him of the group’s existence and that I may have names on my list which he didn’t. I sent him a list of our names (not addresses) but I have not heard anything back from him as yet. I also asked him to forward my ’phone number to people he has and we haven’t. (Reading that back, it sounds as clear as mud, but I am sure you can work out what I mean). In the last newsletter I missed out Ken T in York (sorry Kenneth), Roma H, and mistake number three, Margaret C, in Norfolk. Two more new members, Lynne M, Rotherham and Fiona B, Oxford. Since I last wrote to you I have had a call from a radio station in London called Liberty Radio. Have any of you heard of it ? No, neither had I. Anyway, I had a call about 5.30pm one evening asking if I would talk about SMS. Naturally I said yes, to which they replied: “Good, we will call you at 12.30pm tomorrow, oh and by the way it will be going out live.” I have never been so nervous, but I think it went OK, but there has not been even one ’phone call, so I can only assume they don’t have many listeners. I also got a call from ICIS (Independent Combined Information Service) They wanted details about SMS for their database. It serves people in West Sussex. I wish these organisations would all use the same name (my local one is the CVS) so it would be familiar and be easier for people to find them. I wrote to a Professor Meinck in Germany. I had heard he has a special interest in the anxiety side of SMS. He has written to me three times, which I thought was nice of him. One of the things he talked about (nothing to do with anxiety) was the importance of carrying a card stating what medication we take and when. I, like most diabetics, carry a card in case of hypos but, if God forbid we should have an accident and be unconscious, we still need to have our SMS medication. So I for one have already written the information on my card which lives in my handbag. (Sorry guys you will either have to keep it in your pocket or go all European and get a bum bag.) Quite a few people have talked about exchanging addresses. I said in an earlier newsletter that I would only give out first names and ’phone numbers, so I don’t feel I can go back on that unless you give me the go-ahead. Personally I don’t see a problem with it, as most of us have ‘known’ each other for quite a while now and we would save a lot on our telephone bills, but I will leave it up to you to get in touch with me. I know some of you have OK’d it, but I can’t find the bit of paper on which I wrote it down — so naturally I will blame the kids! Kenneth S’s wife rang me. She has worked in the caring profession for many years, and has kindly offered to lend an ear if there are any family members who would like to ’phone or write to her. (By the size of our ’phone bill I think Dave must have been ringing her every day!) Seriously though, it’s often easy to forget how SMS takes its toll on our loved ones. I was speaking to Claire the other day and although she has ’phoned quite a lot of people there are still a fair number to go, and her telephone bill is going up too! (If you have forgotten why you were asked to ring her, look at the last newsletter). I am going to close now as I am getting stiff sitting for so long — and I still have to print them all out! Take care, Bye for now. PS. Nothing to do with SMS but we got Eloise a waterproof watch for Christmas (she has already lost three watches) thinking she would not need to take it off when she went swimming and leave and lose it at the pool. She came home yesterday without the watch and her excuse was “but mum it says it’s only waterproof up to 30m and I swam further than that.” How can you get cross when an eleven year old uses warped logic?

May 2001

Hello again. What do you think of the new heading? I designed it all by myself and it only took two-and-a-half-seconds! OK, I know none of you believe me. I cannot tell a lie, Dave did it! New Members: Angela M, Pontypridd; Mary E, W Yorks; Christine T, Surrey; Jenny C, East Yorks; Jane H, E. Sussex; Patricia W, Somerset; Howard G, Essex; Tony B, East Yorks.I met up with Tony B. last week. We spent most of the time talking about, and listening to, music. He played bass in a jazz band. As music is a passion of mine (and obviously Tony’s), SMS was almost a side issue. I persuaded him to play me something on my guitar, and after listening to him I now understand why I could never have played professionally. Talking of music, when Patricia W. rang me, she told me her son, Neil, plays bass in a band called Cause for Concern. She got them to send me a signed copy of their CD entitled Don’t Panic! I mention this because there is a track on it called Inside out. I think it could be the SMS theme song on a bad day. Anyway, if you want to hear it, you will have to buy the CD. Patricia, please thank the guys. I wasn’t sure if I liked it when I first played it, but now I seem to keep listening to it more and more. My particular favourite is most definitely 1000 Tears. Just briefly, in the last newsletter, I mentioned the idea of exchanging addresses. I have had a re-think; as the majority of you have not got back to me, I think perhaps it would be better if I left it up to you to ’phone each other and decide what you want to do. However, I have taken the liberty of passing all addresses on to Claire. If anything should happen to me Claire has agreed to take over. Ken S’s wife, Sue, told me that Ken has been advised to go on a gluten free diet (I think he managed two weeks.) Have any of you been given any similar advice with regard to diet? Quickie question: Who asked me about the Travel Club news? I was speaking to Pam Sawtell (Professor Leslie’s research nurse) and she asked me to tell you that the British Neurological Surveillance Unit is asking all neurologists for details of their SMS patients. I assume it will be for research purposes. So, if any of you do not have a neurologist, I would suggest you ask your GP for a referral. If you were diagnosed by someone other than a neurologist, then the BNSU will not have any record of you and that is bound to hinder their research programme. Pam also said she would give my ’phone number to anyone she knows who is not already in the group. So, here’s hoping. This next bit of news is (with regard to the group) very encouraging. I had a call from a lady called Melanie. Her late husband was an SMS sufferer — before any of you panic, his death was not SMS-related. Melanie began fundraising for research into SMS and has given a sizable amount of money to Barts. I don’t know how they intend using it, but perhaps they will let us know when they have decided. Her efforts are on-going. She is planning a summer ball, so if any of you, your friends or even local businesses are able to donate raffle prizes, then I am sure we can arrange some way to get them to her. When I hear when it is planned I will let you know. At this point I would like to take the opportunity to thank her. If any of you would like to do the same, then please write to me and I will forward your letters. Melanie has asked to be on the mailing list and in view of her efforts to help us all (having checked with Pam Sawtell that she is ‘above board’) have agreed to her request. Both Professor Leslie — via Pam and Dr Peter Brown at the National Neurological, Queens Square — are also on the mailing list. Talking of Dr Brown, he has very kindly sent me an ‘easy to understand’ outline of SMS. If any of you would like a copy, then please let me know. Will any of you who have an email address please let me have it? I can then send your newsletter in a much more cost-effective way. With so many members, stationary, stamps, photocopying etc is becoming quite costly. If any of you can log on and send me an email, please do. I’d love to hear from you via this new-fangled technology that I’m (just) getting used to (excuse the grammar). On the subject of costs, my annoying but useful proofreading husband has insisted I put in a request — stress request — for any help any of you are able to give towards the increasing cost of the support group. I am quite happy to foot the bill (well, Dave is, at least!), but a book of stamps here, or some A4 paper there — anything — would be most welcome. If you can’t, don’t even begin to worry. There, I’ve done it: Dave — shut up! A thought that has just popped into my head is about the DVLC. Are you all aware that you have to inform them that you have SMS? If you are confident that you are able to drive, then ask your GP or neurologist if they, if asked, will confirm this. I ’phoned my neurologist and he told me to write, saying he is, at the moment, happy for me to drive. I’m not sure, but I think if you don’t declare you are an SMS sufferer, then your insurance may be invalid. This started out as the April newsletter, but the last three weekends we have had people to stay. I have also spent ages on the computer, writing to ‘This Morning’. I feel it would be a great step if we could raise awareness of SMS on national TV. So, if any of you want to support this initiative, then you should write to Noleen Goulding (she is the producer) at This Morning, Granada TV, Dominican Court, 17 Hadfields, London SE1 8DJ. Well, I think that’s all for now, except to say that if you are going to write to Melanie, will you please send them before the end of June, then I can post them altogether. Take care.

October 2001

Hello Everyone. As is so often the case, I will begin with an apology for the length of time since the last newsletter. My reason this time is the school holidays and then Dave — he has been in hospital with meningitis and pneumonia. He is still off work, but seems to be improving. On to SMS news. New members: Margaret M, South Uist, Scotland; Leanora B, Chorley, Lancashire; Lorraine S, Bristol; Jean V, Glasgow, Scotland; Jo D, Portsmouth; Rachel H, E. Yorks; Janet H, Peterborough. Welcome to you all. There are now 39 of us in the group. When we get our 40th member I think we should do something special — any ideas? Just as a matter of interest, how many of you have set up web pages? I only ask because that is how one of the new members got my name and number. I think it’s great if you are doing this, perhaps you could get together, pool information and make one even bigger and better address! As some of you know, I am a technophobe and don’t even look on the internet (because I can’t, and Dave looses his rag when he has to explain for the umpteenth time how I get past go). I received a letter from one of you asking if I have had IVIg. The answer is no, but if any of you are interested I will tell you what medication I am taking. For my diabetes I take 8u of Novorapid twice a day and 21u of Monotard at night. For SMS I take 5mg of diazepam, 2mg of tizanadine and 2mg of Baclofen each four times a day. I drive (but don't like motorway driving) and use a three wheeled walker for getting around outside the house (and sometimes inside too). Quite a few of you have written and told me about your medication and how SMS affects you, so I thought I would reciprocate. I have been in touch with Diabetes UK. SMS information is now available on their helpline (I sent them Dr Brown’s information sheet). If one of you would care to ’phone and check that they have actually done it, and then let me know, I would be grateful. I have also been in touch with Balance (for those of you who are not diabetic, it’s the bi-monthly diabetic magazine) and practically begged them to do a feature on SMS. They seemed quite enthusiastic, but it will be months before they get around to doing anything about it. However, you know me, I will keep pestering them. I am still ‘pestering’ “This Morning” but with no luck as yet. At this point I would like to thank everyone who has sent stamps or cheques, it really does help. Oh, and by the way, has everyone who asked for a copy of Dr Brown’s information sheet received one? Ken and Sue visited us a few weeks ago. It was nice to meet up with another member. Time really does fly when talking about SMS (as we all know by the size of our ’phone bills!) The next item is a big apology to Claire and Stephanie. As some, but not all of you know, they have both had magazine interviews published about SMS in Woman and Chat respectively. We have gained new members from both articles, but I have not mentioned anything in previous newsletters — if I don’t write it down, I forget! Knowing that, Eloise bought me a notebook only to be used for SMS purposes. So I now have no excuses for forgetting anything! Congratulations to Angela M (and her husband of course) on their silver wedding anniversary. She wrote to me a while ago and I feel I have to pass on a quote from that letter: “I made a promise to myself, to find something to laugh about at least once a day”. I’ll go along with that. In the last newsletter I told you about Patricia W’s son’s CD. Well, if you want to listen to it you can download it, free of charge on www.causeforconcern.org.uk. It’s well worth a listen. Good stuff! In reply to the member who wrote and told me of her feelings of anxiety/terror — unfortunately anxiety is one of the symptoms of SMS. I, too, am very prone to anxiety. The stupid thing is that it is the little things which bring it on. I seem to cope with larger issues. Of course, the anxiety leads to stiffness, which in turn makes the anxiety worse. It’s a vicious circle! For the diabetics among us — have any of you found any difference, SMS-wise, when your BM levels are not within the normal limits? I find that I am stiffer if my blood sugar is above 13. We have just bought another fax machine, so if anyone wants to fax me, then ring first and I will switch it on (a selection of jokes would be nice!). On that note I will close as we are going to visit my sister (for half term) in Brighton tomorrow, and I still have to print this out, do the envelopes etc (and it’s 9.30pm). Hope to hear from you soon. Bye for now. PS. I took Christopher to see the Backbeat Beatles. We were sitting on the front row. I scribbled a quick note asking them to play ‘Yellow Submarine’ for Christopher, as it was the first time he had been to a concert. They hadn’t seen the note, so I gave Christopher a handful of chocs, and he put them on the top of the note. The band stopped playing, picked up the sweets and ate them while ‘Paul’ read out the note and had a chat with Christopher. At the end of the concert ‘John’ pulled Christopher on stage and introduced him as the 5th Beatle. He lifted him up to the microphone and they all sang Yellow Submarine. It was so nice of them to do that, particularly as Yellow Submarine was not on their play list. We had a chat with the band afterwards and I promised to make them a chocolate cake the next time they play in Beverley.When we got home I decided to take the film out of the camera — only to find there was no film in it! So sadly there will be no photographic memories for Christopher.

February 2002

Hello Everyone. Well, we have reached our 40th member — and beyond! Welcome to Jackie A, Newcastle; Jackie B, Bristol; and Sarah C, East Yorks. In the last newsletter I asked what we could do to celebrate getting our 40th member, but nobody responded. So, the only thing I could think of was to print out an up-to-date list of all the members. I had a call from Pam Sawtell. If you have had a questionnaire from her and have not sent it back, would you do so ASAP please. Professor Leslie needs information from as many people as he can to enable him to carry on with his research. If you have lost it, just give Pam Sawtell a ring and she will be only too happy to send you another one. Ken had his story published in the Sheffield Star in December. Bet you didn’t know he used to be a ranger in the Peak District, and has climbed Snowden? Well done Ken! I have had a few calls from people in the area since the article appeared. A few had some of the SMS symptoms, but I have not found anyone who has actually been diagnosed. I have had an enquiry about anaesthetics being given to SMS sufferers. I have tried to find an answer, but I am afraid I can’t. If it is given in a hospital, the anaesthetist will have your notes and be aware of your SMS. Obviously these people are highly qualified and should know what they are doing. However, if you need treatment by a dentist involving anaesthetics, then you may need to discuss your medication and SMS. In the last newsletter I asked if any of the diabetics among us felt stiffer when their blood sugar was high. Five people have said they do — interesting. I don’t know why, but interesting non-the-less! As you all know, I am always looking for new members. One way you could all help is when you next see your consultant. Will you give him/her my name and telephone number and ask for it to be given to any other SMS patients he/she has? I know they are busy people, but it would only take a minute to get their secretary to write to the few, if any, other SMS patients they have under their care. For those of you still interested in receiving newsletters via email — I’m willing to have another go! The thing is, any attachments I send will be Microsoft Word 98 documents, so unless you have this (or a later version) it won’t work. The fact that my version is created on an Apple Mac shouldn’t make any difference to those of you with PCs (you may have to copy to your desktop before opening, but that’s as hard as it gets!). So, if this is your preferred way of getting newsletters, please email me. That way, if I get it, I’ll know your address and be able to reply, rather than worry about keying in the right address from scratch. I have saved the best bit of news for last — we now have charitable status! It is under the umbrella of the CVS (Council for Voluntary Services). Any money begged, borrowed or stolen will go to Professor Leslie at Barts Hospital and be used for research purposes. If anyone is serious about wanting to get involved in fund raising, let me know and I’ll send you the charity number, together with Professor Leslie’s “wish list”. Let’s hope between us we can find organisations, celebrities etc who would be willing to help. Take care. Look forward to hearing from you (please!).

June 2002

Hi Everyone. So much has happened since the last newsletter that I’m not sure where to begin! Let’s start with new members, Marian S. Gravesend, Kent; Myra M. Sidcup, also in Kent; and Patricia D. Driffield, East Yorkshire. Claire has had an article printed in the Whitstable Times. Not only does it describe Claire’s life with SMS, it also serves the purpose of raising awareness. (Claire didn't like the ’photo, but as she sent it to me by fax, it was a bit of a blur, and I couldn’t make it out). Ken and Sue were on holiday, not too far from me last month. They stayed in an adapted caravan, which meant it was easy for Ken to get in and out. They asked if I would like to visit them, but I just did not have the time. Anyway I’m sure it was a welcome break for them, although I don’t suppose they got much of a tan! Happy birthday to Christine T. She is the same age as me now. By the way, Christine, I am taking Christopher to see the Backbeat Beatles again tomorrow night. You told me in your email that when you are up this way you go to the Barbican in York to see 60s shows. I wonder if we have ever actually been there on the same night? Music is my passion. I have been to three concerts already this month. (no wonder we never have any spare cash — still, why should Dave go to work, if I can’t spend his money?) I received a letter from Margaret C. It may be that we share the same sense of humor but I have to pass on something she wrote: “Just like you I am beginning to get stiff. Look on the bright side, we are the only group who experience rigor mortis in real life.” As you will all remember from the last newsletter, we now have charitable status. I was really excited about it. I wrote to a couple of celebrities, but got nothing, and was feeling a bit fed-up as I couldn’t open an account, because there was nothing to put in it. Eloise and Christopher to the rescue! I will miss out all the in-between bits here, and cut to the quick. They (without my knowledge) sorted out their toys, books etc and held a tabletop sale in the front garden. I only found out what was going on when I saw them and the friends they had roped in to help, setting out tables in the front garden, and sticking posters to lamp posts. They had games going on, one of which involved a child sitting on a chair having a wet sponge thrown at him. None of the children volunteered, so they told Christopher he had to do it. Luckily it was a warm day, as he sat in his swimming trunks and goggles (what a sight!) Five minutes after they had set everything up, Christopher came running in with £5.50. When I asked him how they had made so much so quickly, he told me: “I saw a car, so I ran into the road, and the lady stopped. (at which point my heart almost did too). I asked her if she would buy something for the SMS charity, and she did.” They made £20.12, which meant I could open an account. I felt so proud of them that I rang the local paper. They sent a photographer and the story appeared a few days later. It wasn’t a very good story, but I got a strange call that evening. A woman rang to tell me her horse had the equine form of SMS. I thought it was a joke, but apparently (after a ’phone call to check it out) I was assured such a thing really does exist. So, us mere mortals are not so special after all. The next donation was for £100 and was from one of our group. He wishes to remain anonymous. Some sad news now: Laurie H has died. He had been in hospital for quite some time and contracted pneumonia. In March we gained another new member. Her name was Jane. I sent the usual package of newsletters, etc. Later that week her husband rang to tell me she had died. She had a pulmonary embolism. It is always sad when someone dies, but I suspect that, like you, I am glad neither Laurie or Jane’s death were SMS-related. A week or so later I received a call from Jane’s Funeral Director stating that her husband had requested that cheques should be sent to the SMS charity. We have received £637. I have, of course, written to Jane’s husband to express our heartfelt thanks. Those of you I have spoken to recently will know I was organising a charity street collection. Let me say here, I will never do it again!. It began with a ’phone call to the council. I asked for the Jubilee weekend, Sunday and Monday. Both days were free, so in I jumped at the chance. After numerous ’phone calls, filling in of forms (yuck!) etc, permission was granted. The bit I thought would be easy, proved to be the most difficult. That was getting volunteers. I knew there would be a lot going on in the town, but I didn’t give a thought to the fact that a lot of would-be volunteers would be going away, having street parties or having family to stay. Anyway in the end I managed it. Mike T and his family helped, as did Tony. We raised £450. The balance in the account stands at £1,300. I am also waiting for a charity cheque for £70 to be paid into the account. One good thing that happened was that I did not receive the license (and still haven’t) which meant I did not receive a list of rules and regulations either. So how was I to know that one has to be over 16 to collect? — Eloise and Christopher ran themselves ragged begging for money. Let’s face it, who can resist a child, especially when they tell them their Mum suffers with it? Illegal? Yes.Worth the risk? Yes. That leads me on nicely to the next bit of information. Because Tony lives relatively close to me, he has agreed to be the co-signatory for the SMS charity account. He is proving to be a real asset to the group, as he is an absolute whiz on the computer (except he cannot, as yet, get it to make him a cup of coffee). I managed to get hold of some collection boxes/tins/things and Tony did the logos to go around them. He also printed 200 flyers to hand out. Tony has also set up a web site.We have worked on it together and it is still very much in its infancy. We need input from other members, so if you want to put anything on it, then either send me the information or give me a call. If you have access to the internet, you will now be able to receive the newsletters via the web site. Going back to the last newsletter: With reference to the charitable status,. I said: “It is under the umbrella of the CVS.” Apparently that is not the correct terminology. The CVS have given their permission for us to use their charity number. If any of you have sought funding, and given the charity number, by law you have to tell them it belongs to the CVS. I also said: “Any money begged, borrowed or stolen will go to Professor Leslie at Barts Hospital and be used for research purposes.” I think I had got so carried away with the whole charitable status thing that I hadn’t thought of all the options available for how any money should be spent. Since then I have spoken with other people who run small charities and they have all said small charities are unlikely to raise enough money to make any real significance with regard to research. I therefore propose that, initially, priority should be given to support for existing members of the group and to raise awareness of SMS, not only to the general public, but to the medical profession too. Before I move on, two people have ’phoned me and said they did not receive the last newsletter (February). If you did not get a copy, please let me know. I certainly sent them all! Dave has had another ’phone line installed, as he (and others) have got fed-up with the line always being engaged. I spoke to the treasurer of the CVS and he told me the charity should pay for this, and the ’phone bills, as it comes under ‘support for existing members.’ This would mean I could call members and make the seemingly endless calls connected with SMS without expecting Dave to carry on footing the bill. I would appreciate your views on this. I have also applied for a small grant to help run the group. If successful, the ’phone and bills would be paid out of that. I hope to hear from them soon, and will of course let you know the outcome. You will see I have included a questionnaire with this newsletter. Some of the questions may seem irrelevant, but if you think about it, there is no one base where this kind of medical information is collected. Perhaps it may show a common thread within the group? If there are any questions you do not want to answer, then just leave those blank. Anything you write will remain confidential. For the diabetics among us, you will be interested to know that I have finally worn down Diabetes UK and they have agreed to print an article about SMS (not before time). Martin Cullen, the editor, told me it would appear in the July issue, but we will see. I always expect people to keep to their word, but I’m finding out life isn’t always like that. When I have finished this newsletter I am going to have a rest. The SMS cause seems to take up almost all of my time. I can honestly say there is not a day goes by when I am not involved with something to do with SMS. That does not mean I don’t want to hear from any of you! I’m OK, but I just want to have some space in my head for other things for a while. When I have had my ‘space’ I will write again with some ideas for raising awareness which we can all get involved with. I will close now and await your answers to the questionnaire.

November 2002

Hello Everyone. Well, here we are again! As usual, I will begin with a list of new members: Melanie M, Sheffield; Joyce L, Norwich; Mwynwen W, Lockerbie; David G, Bramhall, Cheshire; Michael F, Hull; Carol W, Leeds; Philip B, Newcastle; George G, Hull; Tommy M, Manchester; Geoff C, Norfolk; and last but not least, Jodie G, Peterborough. Thank you to everyone who returned the questionnaire (35). The results are (numbered as per the questionnaire): 1) The average age when diagnosis made: 48. This backs up literature that states SMS usually affects people in the 3rd or 4th decade of life. 5) Length of wait for SMS diagnosis: Average of four years. 6) Of those originally misdiagnosed, depression was by far the most common answer. 7) SMS medication: Most people take Baclofen (20), closely followed by diazepam (17). Gabapentin (Neurontin) (6) and Rivotril (Clonazepam) (7) were the two ‘runners up’. 8) Fourteen members are type 1 diabetics. 9) Thirteen of you have had IVIg. 10) Of the diabetics among members, the overall impression ranged from ineffective to actually making them feel worse. Only two said it helped. And of those who are not diabetic, two said it made them worse and two were happy with the results. One diabetic and one non-diabetic both contracted aseptic meningitis. 11) Eight diabetics said they felt stiffer when their blood sugar was high. 12) Ten people said they knew of other members of their family who also had an autoimmune condition (I would hazard a guess that the figure may be higher, as autoimmune conditions are not the kind of thing one chats about over a cup of coffee). 13) Incredibly, 19 people said they suffered a particularly stressful event up to five years before the onset of SMS. 18) Eighteen people said they would like to see the charity money spent on raising awareness. Sixteen said support for existing members and eight said research. Two of those in favour of research believe we need to raise a lot more than we have now for it to be of any use. With regard to question 18), I believe for the time being we should go with the majority decisions. There are various ways in which we can raise awareness. The first is getting the media interested. The majority of you heard of the group by reading an article in a paper or magazine, so if any of you feel you are able to approach your local rag, then please do. They are usually interested in a human interest story. For those of you who have never done anything like this before, believe me, it is not as daunting as you may think. They will want to know what the condition is. You can tell them it is a rare neurological condition which affects about one in two million people and is characterised by painful spasms and stiffness of the muscles. Then tell them your story and how you cope with SMS. Don’t forget to tell them about the support group and please give my number — or your own if you would rather deal with any calls yourself. If you feel confident enough, you could try the ‘Doc spot’ or its equivalent on your local radio. However, from past experience, I would say it is more nerve wracking than taking your driving test! You need a large G&T before attempting it. Another way would be to send me your story, which could be put on our web site. Your name does not need to appear on the article, or you could use a pseudonym. The only thing I would suggest is you write about the good days too, as we don’t want to unduly worry people. We all suffer the same basic problems, but some have more unusual symptoms and I think it is a good idea to let others know about them. Our web site has generated a lot of interest but we really do need more to put on it. At the moment, I am trying to find a consultant willing to write a letter that can be sent to GPs to explain, among other things, the early symptoms of SMS in the hope that fewer future sufferers will have to wait for an accurate diagnosis as long as most of us had to wait. A mammoth task, but I can’t think of a more (hopefully) worthwhile thing to do at the moment. With regard to ‘support for existing members’, the money is currently being used to fund the running of the group. I hadn’t realised how much our telephone bills were until I got the new line put in (that is the only bill I — sorry, the charity rather than Dave — pays). If any of you want to call me, then please ring (after 6pm if possible) and I will call you straight back. If any of you have any other ideas which would fall into ‘support for existing members’, then please let me know. As you are aware we operate as a charity, using the CVS’s charity number. They have advised me that we should have a committee and a constitution, and they want to know who’s doing what. At the moment we are sadly lacking in finding volunteers for the committee. I think it’s fair to assume that I would be secretary. Tony Barr has agreed to be treasurer, as he is the co-signatory of the charity account, and Vanessa Hobby (State Registered Chiropodist) has agreed to be chairman. She is my best friend and although she does not have SMS, she does have an understanding of the condition. The charities commission (whose rules we have to abide by) does not require all committee members to be sufferers. If any group member, a family member, or friend would volunteer, it would be extremely helpful. The only downside is that meetings (hopefully twice a year) would be held in my home. Which is why initially it is easier if committee members are either local or are able to get here. If you would consider becoming part of the committee but find the distance a problem, then I would be quite happy to ‘put you up’. After a constitution is drawn up and everything is in place, then future meetings will (hopefully) be shorter. If we can get a committee and a constitution up and running, then each year the group will be able to vote in a new or existing committee. Perhaps one day we may be able to become a charity in our own right! We have a new name to add to the mailing list, Dr Alec Ming. He was the neurologist who diagnosed me. I was his first ‘customer’. Since then he has diagnosed several other people (as you will have noticed, there are quite a number of us in my area now and virtually all are under his care). He has given lectures/talks about SMS, which all in all makes him an excellent addition to the mailing list. Changing the subject completely — did any of you see Trevor McDonald’s programme about date rape? Apparently diazepam is the most common drug used by assailants. When taken with alcohol, it dulls the senses and makes the victim completely forget what has happened. Since seeing the programme I can’t decide whether to stop my usual three-times-a-week night clubbing antics, or up it to five! I started this letter in October. It is now almost the end of November. Time flies when you’re having… building work done, relatives and family visiting, going on holiday, and trying to decorate (slowly, but with every bit of determination I can muster). And you thought I was going to say fun! Please, please consider both major points I have included, and remember — although I run the group, it belongs to all of us. Lastly, as this newsletter is so close to the festive season, I thought I would include your Christmas cards. And on that note I will leave you with my best wishes until we are in touch again. PS: A message from Jenny: Hello everyone. Just a quick word to say a big thank you to all of you who have returned questionnaires — 29! I must apologise for not replying personally to all those who took the trouble to write and give so much more information. I hope to get back to you at some stage but want to thank you in the meantime here. I have been very busy with ME questionnaires and a conference. There is a huge amount of information about Stiff Man in your responses and I shall try to put it in some sort of readable format to pass on the information to you. Some of you were very supportive, some felt the symptoms I mentioned as being “SMS” were not SMS. All I can say is that many people had the full range of the symptoms I put down. A few were dismissive about ME. I would recommend that you look at the chief medical officer’s report on ME published in January (wwww.doh.uk/cmo/publications/htm) and no, it isn’t depression! I shall wait a while longer before the final analysis of all the information in case some of you simply forgot and would still like to send the questionnaire back. It would be amazing if I could get them all back — all 51. That would give such a detailed study of the illness and how it varies from person to person (in addition to what I set out to find out for myself). Since each person’s illness is different from anothers, would it be useful/interesting to collect together as many different “stories” as possible? Telling of how it started, progress, effect on life, what helps, etc? We could collectively write a book! It might help at least in booklet form to help get/give diagnoses. Perhaps those of you have had it diagnosed for many years know already where there is such information. Finally, a big thank you to all of you who filled in the forms and a special thank you to those who wrote, as well. I will get back to you with the information, probably in the New Year. Best wishes, Jenny.

May 2003

Hello again. Although I can hardly believe it has been six months since the last newsletter, I have not been sitting on my laurels, and I have spoken to quite a few of you since then. There are three new members — Diane C, Stow-on-the-Wold; Ian S, Little Weighton, East Yorkshire; and David D, Manchester, . Now, take your mind back to the newsletter of February 2002. For those of you who have lost it, binned, it or used it for lighting the fire, I am referring to the bit about obtaining charitable status which said we were able to use the Beverley CVS’s charity number. I also told you the CVS had asked if we would form a committee and write a constitution of our own. Once that requirement had been (finally!) organised, I rang the CVS, only to be told that they would be closing two days later! Sadly, that has left us without charitable status but, as they say, “as one door closes another one opens.” Our committee had already been formed — at our first meeting on Saturday 26th April. We wrote a constitution and we are going all out to become a charity in our own right. So please pray, touch wood, cross your fingers, or whatever else you can think of that will make the Charity Commission look favourably on our request. I sincerely hope there will be good news the next time you hear from me. As it stands at the moment, the committee is made up of Vanessa Hobby (chairman), me (secretary), Tony Barr (treasurer), David Morris, the husband of one of our SMS sufferers and last, but by no means least, Pam Sawtell, Professor Leslie’s research nurse and all round good egg. I am having our new constitution checked over to make sure we have met the Charity Commission’s requirements. Having got the ‘work’ finished we all went to a pop quiz at Dave’s golf club. Guess what? We won! Pam and Tony stayed the night and it was a very enjoyable weekend. I had been anxious for days prior to the meeting, but when we got started, the anxiety, spasms and stiffness decided to take a couple of days holiday. However, they came back on Monday and gave me a good dose of what they do best! Again, going back to the last newsletter — I mentioned the idea of informing GPs about SMS. I spoke to a neurologist about this, but he felt it would not help as GPs receive so much mail, the majority of them may not even read the information, and those who did would probably drop it in the nearest bin. As a former practice nurse I should have realised it was a long shot. It seems the media is still the best way to raise awareness. I have just written a piece for the Neuropathy Trust. There is no guarantee it will be published, but here’s hoping. When I get the time I intend getting back on the trail of raising awareness. Why are there only 24 hours in a day? On the subject of ‘why’, why do I need to sleep away so many of them, why do I never get to see the end of a film, why do I sometimes go to bed before Eloise? There are lots more, but I won’t bore you with them all. Back in February there was a lovely surprise in the post. It was a cheque for £520. Philip B’s family had organised a ‘bring and buy’ and a coffee morning. The whole family had baked for two days! Thank you doesn’t seem to be adequate, but it is a big thank you, and I am sure everyone in the group feels the same way. The account now stands at £2,574.77. I was speaking to Ken S the other day. He had been told to try a gluten free diet (yuk). He stuck to it for a while, but it made no difference whatsoever. My view on the diet, or any type of diet to cure SMS, is that if it were that simple, then wouldn’t it have been discovered by the professionals? If any of you have any comments on this, please let me know. I got a Kleeneze catalogue a little while ago and there was an item some of you may be interested in. It’s a revolving car seat. It says: “You simply sit and turn. The cushioned seat has a removable cover for easy cleaning” and is 38cm in diameter. For those of use who still speak English, that’s about 15 inches. It’s priced at £14.99. I wondered if it may also be useful around the house. I thought about getting one for my dog, Ollie. I could sit him on it and spin it around until he got dizzy. The thing is, he is daft enough to do it, and then go back for more. However, Dave didn’t find the idea as funny as I did. I also thought that the answer would definitely be“yes” if the question “Does my bum look big in this?” was asked. Anyway, enough of this. If anyone would like one, and you don’t get the Kleeneze catalogue, just let me know. Whether they are actually any good, I don’t know. Anyone tried one? Picture this…a house somewhere in Somerset not that long ago. The lady of the house (Pat) walks into her kitchen, trips and falls backwards into the garden (must be the drink, I reckon!). She calls out for help and a young woman riding her horse sees what’s happening and, still on horseback , jumps over the garden wall and gallops like a (female) knight in shining armour to her rescue. Meanwhile, Pat’s next door neighbour’s daughter’s boyfriend (still with me?) leaps over the fence to see what the commotion is all about. At that point Pat doesn’t know whether to laugh or cry with all the good samaritans around and her sitting on the grass (I know what I would have done, but I had better not say). Unfortunately for Pat, it turned out she had broken her arm, but at least when people ask her what happened, she will have a good story to tell! The next event occurred when Pat fell while upstairs. She shouted for her husband, but he was happily (and loudly) singing away to the radio downstairs and didn’t hear her cries for help. In desperation poor Pat had to press her emergency “lifeline button” which is a special helpline to an operator who, in this instance, telephoned her home. That got her husband’s attention but when he answered the ’phone he told them Pat was OK and must have pressed the button by mistake! It was only when he went to tell her about the call that he realised the awful truth. It’s a good job Pat has a great sense of humour, although I’m not sure what she said to her husband on that occasion. Staying on the silly side of life, I think being diabetic has its advantages! Recently, I had to take Christopher to have the pot taken off his broken arm (he had climbed down the steps of his bunk bed head first — managing only two steps before he fell…). We arrived at the fracture clinic and it was as busy as a half price market. We sat down, wondering which day of the week we would get home. I decided to do a blood sugar, and realised that I had left my kit at home. I asked a nurse if there was a meter in the clinic I could use, but there wasn’t. She was obviously ahead of the game — she asked Christopher’s name and told me not to worry. She walked out and came straight back in shouting “Christopher Blows”. In we went, saw the doctor, had the pot taken off, saw the doctor again and then left. We were there less than an hour. The nurse gave us a wink and a smile as we walked out. Lastly, don’t forget, if you want to ring me please do and I will ring you straight back — save on your ’phone bill!

October 2003

Hello All. I can’t believe it’s autumn and still warm enough to wear a t-shirt. Personally, I would also like to slip on my shorts but the health inspectors are very active in this neck of the woods (they obviously know me too well)  As usual I will begin with new members: Beverly W, Birmingham; Maureen B, Stockport; Don B, Bristol; Yvonne D, Halifax; Katie C, Grimsby; Jane D. Portsmouth; Craig F, Sussex; Chris H, York; Liz S, Kenmore, Perthshire. Welcome one and all. This brings the headcount of we merry-but-stiff band of brothers and sisters up to 66. Six hundred more and we can become the number of the beast and apply to Satan for a grant! Interestingly, it was once suggested that the incidence of SMS was thought to be in the region of one in two million, therefore 30 sufferers in the UK would be the absolute limit. (How things have changed!) I’ve no doubt there are many more of us out there so perhaps we’re all a bit more common than we thought! The really BIG news is that we now have official charitable status! The name of the charity is STIFF MAN SYNDROME SUPPORT GROUP. Our registered charity number is 1099206. Typically, things did not go quite as smoothly as planned... The (understandably cautious) Charity Commission had to use the internet and ’phone various bodies to ensure Stiff Man Syndrome a) did exist and b) that it did not contravene their equivalent of obscene material. If we were called the Stiff Bits Syndrome, we would most definitely have had to change it. By the time you receive this newsletter, the constitution will be on our web site. Other great news: Philip B’s family have once again dipped into the fund-raising well. I received a cheque for £337.54. Thanks to them one and all. If anyone else is interested in having a go, but are not sure what to do or how to go about it, then please let me know.  In the last newsletter that was so many moons ago, I mentioned that I had written an article for the Neuropathy Trust. It was published in August. I have had a few calls from readers, but the editor still hasn’t sent me a copy. Still on the subject of the media, Melanie M and her husband had a very moving article printed in the September edition of Take a Break. A company called Medic Media UK called me a while ago. They are producing a magazine containing information about all sorts of medical conditions. It is to be distributed to surgeries and given to patients as they arrive. I discussed it with other committee members and we all agreed it would be good publicity. They have sent me a copy and I have to admit it does look very professional. The area we chose to cover was Northern Ireland as we don’t have any members there. I was told it would be issued in December, and distributed for a year. If it proves useful then perhaps we could target another area next year in our on-going bid to raise awareness of SMS.Do you remember I told you about a revolving car seat, and asked if anyone had tried one? I have had only one call on the subject, a very negative one at that. It was suggested they were a “death trap.” Anyone else had any close encounters of the revolving kind? Now for the latest in my series of “Picture this…” Michael A, in all his naked glory, preparing for bath time. A hush fell as he prepared to take the fateful plunge, faithful wife Janet nervously watching in anticipation. But before the starter’s gun could echo around the steam filled room Michael slipped majestically headlong into the watery depths — and broke his wrist. But what style! Up jumped the jury (Janet) with 9.3, 9.7 and 9.6 — and instant qualification for the next Olympics. Brian Phelps eat your heart out. Watch out for the latest installment of “Picture this…” in the next Newsletter. I have mentioned my ‘drinking habits’ to some of you in the past and thought I would include the following: “Alcohol is the anaesthetic through which we endure the operation called life” (George Bernard Shaw). For those of you who don’t have a clue to what I am referring, I will explain. When I am feeling very stiff, I imbibe a (relatively small) vodka. After about 10 minutes, lo and behold! I can feel myself loosening up. I know all the medication states: “Avoid alcohol” and that the medical profession probably would not approve, but I have found it a useful alternative medicine. I am not saying you should try it (although I know many of you do), but it does help me. Another thing I do which seems to help is count. When I am walking outside with the help of my trusty, invaluable, wouldn’t-be-without-it, three-wheeled walker and I start to have an anxiety attack, I count my footsteps. I know it sounds ludicrous, but I suppose I am trying to confuse my brain into thinking it is ‘normal’ (thank heavens it’s you lot I am telling this to, or the nice men in white coats would be taking me away in a white van). On the subject of things that help, Malcolm B tells me he uses acupuncture and shiatsu, saying it helps a lot. Must admit I wasn’t sure about the latter — at first I thought it was something to do with someone called Sue who had a problem with loose bowels…Margaret C wrote to tell me about a homeopathic drink. She says: “I used to suffer with terrible discomfort in my lower back. You couldn’t say it was painful, but it was constant and annoying. The drink is called Forever Freedom and is made from the pure gel of the Aloe Vera plant. It is not cheap and costs me about £25 a month, but it has certainly helped and the discomfort has gone.” If anyone would like more information please write to Forever Living Products (UK) Ltd, Longbridge Manor, Longbridge, Warwick, CV34 6RB. I believe we all try many different things in the hope we will find something that gives relief. If any of you have/do something that helps, please let me know and I can put it in the next newsletter. As some of you may know, Pam Sawtell has now retired as Professor Leslie’s research nurse now she’s reached 150 (although she doesn’t look a day over 149). I did hear on the grapevine that George Clooney had been stalking her for months, but she has turned him down because the only donation he was prepared to make wasn’t to the SMS charity! Seriously though, over the years Pam has been a wonderful source of information and help to me and the group. So, from all of us — have a fun-packed retirement! Her position has been filled by Leanne Jenkins. She, too, is very pleasant and helpful. In fact, she has managed to extract some interesting information from Prof Leslie about what they are doing at the moment. They have collected blood samples from more than 50 sufferers of SMS in the UK and another 30 in Germany. With this group of patients it will be possible for the first time to define the genetics of the condition and the association of the immune response with the clinical features. At present they are asking all doctors looking after patients to send details of the clinical features of each case. It would be helpful if patients could encourage their doctors (especially their specialists) to fill in the form that was sent to them, or to send a summary of their condition. They are also in discussion with organisations in America to consider funding a drug trial to prevent the condition. Leanne asked me to ask if you have had a letter from her — and if you have not responded, will you please do so? She also asked me to tell you that she will be writing to most of us asking for more blood. Not sure if it’s for more tests or to feed the London Chapter of SMS Vampires. And that’s all for now, folks. Please keep in touch and help me make these Newsletters both informative and a little bit of light relief to lift the gloom. PS. I have enclosed your Xmas cards a) to save on the stamps and b) to save me writing all the envelopes!

March 2004

I have just looked at the previous newsletter — last October. Oh, how time flies! It began with a weather report, and how warm it was. As I look out of the window today, it is just as beautiful but in a very different way. Perfect blue skies, brilliant sunshine and inches of pure white snow. I want to get out the sledge and race down Hill 60 on the Westwood (a vast expanse of common land for the sole benefit of the people of Beverley). Fifteen minutes later… I have been sitting with my eyes closed and living that dream. I now have no feeling in my frostbitten fingers and toes; I am soaked through and completely worn out so I’m off to have a piping hot shower and a scalding cup of coffee. And wake up. See you later. OK, I’m back, so on to the new members. Ros F, Great Yarmouth; Brenda S, Bristol; Jo M, Letchworth; Bev M, Letchworth; Helen F, March, Cambridgeshire; Moira M, Isle of Arran; John R, Hampshire; Jo D (but as we already have a Jo D, it seems appropriate that our new member should be Jo D 2!). Jo D2 lives in Derby. Two members have been told they do not have SMS: Katie C and Lorraine S. There are two other members who must have moved and, despite my efforts, they remain elusive. They are Lynne M and Rachel H. That’s eight in, four out! This means, if my maths is correct, there are 68 of us. We also have a new member on our mailing list, Dr Chris Walton. He is my diabetic consultant. Over the years he has shown a great deal of interest in SMS. He will, of course, be getting a copy this, and all the back newsletters. The last thing I want to do is embarrass him, but I have to say I wish all the diabetics in the group were under his care. He really is that good. Have any of you heard about “Give As You Earn”? (no, it’s not a joke. I know we don’t earn anything, but we know lots of people who do). Anyone can join GAYE if their pay or pension is taxed through PAYE and their employer offers a scheme. They just need to ask for a doner joining form. By giving direct from one’s pay, it is tax free and the government adds an extra 10%. For example, if someone pledges £10 per month, it will actually cost £7.80, but the charity gets £11. The increase in value is even greater if you pay higher rate tax. We already have one group member who has managed to get someone to join GAYE and we have been receiving a modest monthly cheque for some time now. A little bird told me that some employers will match the contribution. So if you know anyone out there willing to participate? I have just read an article about rail travel — you probably know about it, but for those who don’t, it states that people in receipt of DLA at the higher rate can save a third off the price of a ticket, as would a carer. The rail card costs £14 per year. I don’t know if this offer applies to every network, but if you do prefer rail travel it may be worth looking into. Did you know Asda is to employ disabled mystery shoppers to carry out undercover inspections of every one of its stores? Under the scheme, disabled people will visit each of the 260 stores four times a year to test how accessible they are to people with mobility, visual and communication impairments. The mystery shoppers will judge stores on staff attitudes, disability awareness and issues related to their own disabilities. ASDA hopes the £30 million investment will help it comply by the deadline of October next year with its access duties under the Disability Discrimination Act. It will pay for facilities such as induction loops, tactile signs, lowered counters for wheelchair users and new lifts. It’s to be hoped other supermarkets and major chains, never mind smaller outlets, will follow suit. A little news now for our beloved and patient carers. A charity called the Kiloran Trust offers breaks for carers. The accommodation is in West London. The rooms are spacious and en-suite with a TV and tea/coffee tray in your room. There is also a living room with big fireplace and a south-facing garden. It sounds an ideal place to enjoy home cooking (special diets catered for). You can relax, or do your own thing in London. The cost for full board is £50pppn or £250 for a five-night break. For those on low benefits, Kiloran can help set up arrangements to get the cost of the stay covered. If anyone is interested please ring 020 76027404. The only problem is what to do with us while you are away (or what we may get up to)! However, if that is a problem, then contact your local Social Services office. Now, on to raising awareness. I recently had a mammogram. I will skip the gory details and get to the important bit. I was asked what my disability was and, naturally, I told them. I also told them that some variants are associated with breast cancer. At that point their ears pricked up. I gave them our web address and they seemed genuinely interested. Unfortunately, we don’t actually have any references to this particular subject on our web site. I will have to see what I can do about this. Worth noting at this point that the wonderful Mr Tony Barr has redesigned and updated the website. Looks really professional. The address is at the top of this newsletter if you don’t already know it. Now for the inevitable “Picture This” the latest in my series of anecdotes about the (usually) humorous exploits of group members. Here goes…Picture this — a quiet little hamlet in Gloucestershire. Diane (who doesn’t normally drink) and her husband Dave have popped down to their local for a ‘quick one’. Five large glasses of red wine later, they began their trek home, weaving merrily down the road as they go. Unsurprisingly, the walk was somewhat slower than usual, as Diane felt just a teeny bit wobbly. But when Diane started singing ‘I Did It My Way,’ Dave decided they should get a move on before the cacophony caused a disturbance of the peace. Unfortunately, Diane’s capacity for singing and walking at a brisker pace proved mutually incompatible. Just as she got to the line ‘la la la and took the blows’ down she went in a heap. Dave, ever gallant, tried to help her up but she was having none of it and, as politely as one does after five glasses of wine, told him to go on home without her in no uncertain terms. Poor Dave didn’t know what to do, so he walked slowly away, glancing back every few steps to make sure his rather inebriated better half was OK. Eventually, Diane managed to struggle to her feet and used her sticks to walk a few more unstable steps. And promptly fell over again. Unfortunately, by this time Dave was out of sight, but three passing youngsters came to the intoxicated maiden’s rescue and she somehow managed to use her mobile ’phone to ring her son who dutifully arrived, picked her up and drove her home. Whether she was into another discordant Frank Sinatra ditty by now is not certain… Anyway, a little later, around 11pm, a sobering Diane noticed a growing pain in her arm that seemed to get worse and worse as the alcoholic effects wore off. Dutiful but exasperated Dave did the only decent thing and took her to the local A&E — only to find to their collective surprise that Diane had broken her humorous in one of her tumbles but hadn’t noticed a thing due to the alcohol induced anesthetic. Strangely appropriate it was that particular bone. Perhaps not that funny, but you’ve got to laugh, don’t you? Perhaps next time she should sing “Love Hurts”…I was hoping for some SMS news from Bart’s hospital. Professor Leslie is a very busy man, so let’s hope we can get some information I can include in the next newsletter.As usual, my very best wishes.

June 2004 

Hi Everyone. I hope you all as well as you can be. I will get straight on to new members: Del D, Scunthorpe; Alan J, Cheltenham; Sharon W, Sleaford; Carol S, Whitehaven. I don’t know if any of you noticed my mistake in the last newsletter, but I put Jo M and Bev M as new members, same address. Well I can tell you they are not sisters both afflicted with SMS. In fact I have just rung Bev and she has told me she has been mis-diagnosed, and does not have SMS after all! I get emails from all over the world, because of the web site. There is one woman who would like to be in touch with any of the members of the group. She is from Australia. Of all the emails I receive, she is the first person to ask if I would put her address in our newsletter, so I am sure she would love to hear from you. In the last newsletter I mentioned the scheme called Give as you Earn GAYE). Have any of you had the time to look into it, or rather ask family or friends if they can help? Again, going back to the last newsletter, is anyone going to take advantage of the Kiloran Trust? The committee had its meeting in May. We are hoping to have an awareness week beginning 6th September. In the next newsletter I will be sending out A4 size posters in the hope you will all help to promote awareness of SMS. There are lots of places they can be put up. The neurology or diabetic departments at your hospital seems to be the first places which spring to mind. Perhaps the council information centre or the library would oblige. I am sure you can think of other areas who would be willing to help. If any of you think of an appropriate place, then please give me a call. If there are any of you who feel they cannot help out with this, then please let me know as it will save on the printing, and the extra postage. Chris H will be singing at Covent Garden on the 6th and 9th September, so perhaps we could all go, and at the same time we could flood London with posters! Good luck, sorry, break a leg, Chris! By the way did you know there is an access guide showing which London underground stations are accessible to people in wheelchairs? The tube access guide is available at any underground station, and is also available by calling 020 72221234. Having said that, I don’t fancy trying it during the rush hour! There have been many times in past newsletters when I have asked questions, and it is always the same people who get in touch. I feel a bit disappointed not to hear from ‘the silent majority’. Anyway I have had my little moan, so I will leave it at that. Now for the bit you’ve all been waiting for — my “Picture This” tale of everyday happenings in the life of SMS sufferers. The story this time is one of gallantry, modesty and animal awareness submitted by one of our country cousins. The story as submitted is quite long, so I hope the contributor will forgive my rather savage editing to make it short enough to be contained within a Newsletter. Picture this…a quiet country setting, a knock at the door of our storyteller, and the appearance of a lady in distress. Somehow, she had managed to lock herself out of the home she was minding for a friend — and the only way she could get in was through a first floor window above a rickety lean-to-cum-conservatory. Snatching up his trusty ladder, our country knight in shining armour galloped to the rescue, dodging a pair of evil-eyed Jack Russells and a goat with a passion for butting. But the ladder was too short! So nimbly evading the predatory beasts once again, our hero rushed out to find a longer implement. Once more he side-stepped the beasts of prey and and prepared to ascend the ladder. But the plucky lady in distress, who was obviously a maiden with equality in mind, insisted she should do the deed and ascended the ladder, albeit in a most unladylike (and revealing) manner. Our hero modestly averted his eyes only to be forced to look again as the maiden cried for help, unceremoniously straddling the half open window with her tweed skirt around her waist. Our hero dashed to her rescue, clambering with all the nimbleness he could muster up the ladder and across the top of the very unsteady conservatory. With his eyes fixed firmly on anything but the distressed maiden’s underwear, he managed to free her from her predicament and success was at hand. Our weary hero returned home for a welcome rest — it had been quite an ordeal for someone with SMS and recently acquired high blood pressure form the sights he had almost managed to avoid seeing…Our tale of knightly gallantry ends with a smile. A few days later, the owner of the house happened by and thanked our hero for his noble deed — and said if it should ever happen again, use the front door key he always kept under the flowerpot! Personally, I don’t know why he didn’t look there in the first place... Anyway, what shall I do this afternoon? I have three choices, do the ironing, while watching Tim Henman; plant the rhubarb my neighbour gave me yesterday; or print out the newsletters. As it is June 30, I had better do the latter, or it will be the July newsletter!Bye for now.

August 2004 

Well, this must be a record, three newsletters this year and it’s only August! There are two new members; Jane H, Newport; Susan A, Hull. Going back to a previous newsletter, I mentioned rail travel. One member told me: “I did have a better experience with train travel though. When I was still wheelchair-bound, a friend took me to a retirement ‘do’ in London. I contacted the local train company and was met at the station by a helpful man with a ramp. I even had a letter recently telling me of a tunnel closure at the next station down the line. It’s only access is by many steps, so they would supply a taxi between stations either side. I thought that was very considerate.” Well done! Since the last newsletter I have been in touch with a friend who runs a PR company — or should I say Dave has. The company is called ‘The Public Relations Company Ltd’. The MD is Mike Stathers. We have known him a long time, in fact he and Dave were at school together. As things stand at the moment, we have £2,500 in the Charity account. What Mike proposes is that for £1,000 he will start the ball rolling. His initial objectives are a) Media campaign — newspapers and magazines; b) To enlist a commercial or corporate sponsor; c) To obtain grant assistance locally, nationally and from Brussels; d) To find a patron. The £1,000 will pay for two months, and he is giving us a third month for free. Just like the supermarkets — ‘buy two, get one free!’ Joking aside, he believes this will be at the very least self-funding. Therefore there is the possibility of it being an on-going process. When I told him about the SMS awareness week in September (look at the last newsletter), he felt it should be something we could do further down the line. So I will not be sending any posters with this newsletter. I was speaking to one of the members who told me that when she looked on the internet, and typed in SMS she ended up with more sites to do with mobile ’phones than our SMS. So if you are looking on the web, you need to type in Stiff Man Syndrome.And now the ‘funny bit’. Picture this…A cold 4th of November day, and a knock at the door reveals the man delivering the long awaited lubidet (an electric loo/bidet). She waited excitedly while he assembled the afore mentioned item. She couldn’t wait for him to go — so she could! It is everything she hoped it would be. Such was the novelty, the following day she did the ‘man thing’ and took her magazine with her. She hadn’t even got to the end of page one when BANG! It exploded. Flames very quickly engulfed the bathroom. Her son managed to rescue her and then rang the emergency services. Within minuets the police, a fire engine, an ambulance and half the neighbourhood were on the doorstop, and she was rushed to A&E. Well, I suppose it was the right day for the fireworks! A few days later, her catheter tube had blocked, which meant yet another trip to A&E. She was greeted by a nurse (with a very loud voice) saying “I know her, she’s the lady with the exploding toilet”. On Holby city or Casualty they normally ’phone the appropriate ward and say “We have a heart attack coming up to you” and they are immediately sent there. However in this case, the only bed available was on the gynaelogical ward. When the admissions nurse rang the ward, she told them “We have a stiff man coming up”. Of course, the said ward thought it was a belated April fool’s joke and ignored the call. Two hours and many ’phone calls later the lady in question was taken to the ward. She wondered why she was getting so many strange looks from the staff. Later (when they realised she had a sense of humour) she was told they had expected either a dead male or….well, I will leave the other option to your imagination. On that note I will leave you with my Best Wishes

December 2004 

How can it be December already? Anyway, before I get on to the new members, I must tell you about our holiday. We have just spent two glorious weeks in Florida. Apart from… I almost drowned twice, once while snorkeling in Discovery Cove, and the other when I was trying to be clever by body-boarding on Cocoa Beach. And then I lost my grandmother’s watch (I was heartbroken for ages — until it turned up in the bedsheets in our hotel room). What else? Oh yes, we lost Christopher. Only for about for 35mins but it seemed like an eternity. But the real nightmare (for everyone else, not me) was the number of times (countless, did someone say?) that my family ‘lost’ me and then ‘found’ me merrily chatting away to anyone I could. Don’t they realise that talking is what I was put on this earth to do? Anyway, apart from that, we had a fab time.So, on to new members: Colin R, Hull; Fiona M, Dundee; Margaret H, Cannock, Staffordshire; Andre M, Chesterfield; Mary Leckey, Gloucestershire.Our PR company has been working well on the raising awareness front, although I have to say the first article, written in our local paper, would have made more sense, and have been more interesting, if Christopher had written it, even though he’s got dyspraxia! (why is dyspraxia such a difficult word for a sufferer of this condition to write?). Anyway, I digress. The next article appeared in the York Evening Press, featuring Chis H, our opera singer. Mike (the PR company’s MD) also arranged a photo shoot when Chris appeared in La Giaconda at Covent Garden. I don’t know how, or when, that will be used. Angela M told her story to Woman magazine, which featued in the October 11th edition and led to a contribution by the magazine of £400 into our account. There are two other magazines interested in publishing SMS articles, and a couple of daily newspapers. It is at this point where I reluctantly (no, not reluctantly) ask if anyone would put themselves forward to tell their story? Give me a call — you know it makes sense and it’s not as scary as you may think. As you all know, raising awareness is so important. In fact, if anyone has any ideas about awareness raising please let me know. When I was diagnosed, I was told SMS affects 1 in 2,000,000. As the numbers in the group grow, it shows there are many more of us than we first thought. So please, give some thought to what I have just asked of you. Fund raising and finding a patron are on the back boiler at the moment, but Mike has told me he will carry on past the three months we have paid for as things have not gone as swimmingly as he had first thought.Contact a Family/Rare Disorders is not an organisation about which most of you will have heard. It is a UK-based charity whose aim is to raise awareness of all sorts of rare conditions. In January, all our details will be appearing on their web site (details to follow).Recently, I was talking to a fellow diabetic who told me he often forgot whether or not he had taken his lunch time jab. I had the same problem until I decided to have my jab first and then take my tablets. That way I just need to see if my tablets have gone and I know I have had my jab — not rocket science, but it works (the non-diabetics among us will probably be wondering how one could not remember sticking in a needle, but when it’s three or four a day, every day, it’s easy, believe me). I had a ’phone call from Viv M not long ago. She hasn’t been able to speak properly for a very long time because SMS affects her face and neck. She believes the answer lies in the use of magnets. Since trying this alternative therapy, Viv says her energy levels have improved and she doesn’t have as much joint pain. She asked me to tell you about the company from which she bought the magnets. It is called World of Magnets Ltd, tel 0800 6121347. My view? If it works, try it. Over to you...I know I have touched on this subject before, but there are two members of the group who, through necesssity or design, eat a gluten free diet. Both are diabetic. One copes and feels very well, the other less so. Staying on the subject of diets, one member informed me that eating certain foods sends induces spasms. They include anything tart, like certain fruit, ice cream, some types of chocolate and fizzy drinks. Following Angela’s piece in Woman, I had a call from a lady sugesting a totally organic diet. If only we could all be like Felicity Kendall and Richard Briars (The Good Life) it may work. I remember last year we decided to go on an additive free diet for two weeks. It nearly killed me. I baked bread every day, made pasta, pies, biscuits, cakes etc, etc. We didn’t feel any different, so in fact it was a waste of time, but I have to admit I was highly delighted to get back to our allegedly normal healthy diet, and have a bit more time outside of the kitchen.And now for a First! An advert: Ken S has a Go Go scooter for sale. It has three wheels, will fit into any car boot, separates into four pieces and will hold up to 17 stone. Included are a very compact battery charger and a manual. It is nearly new. He is asking £600. If anyone is interested, please get in touch with Ken . If anyone else wants to use the newsletter to try to sell anything, freel free to let me know (spouses and hormonal teenagers are not included in this section — please try your local newspaper…). In the next newsletter I will be sending a questionnaire designed to gather yet more information about us, our condition etc. Basically, collecting data that could benefit members and new recruits to the group. If there is anything you feel should be included in this research, do let me know — and if you don’t want to take part, drop me a line or phone me. And finally, Picture this…Michael was desperate to get out of the house by himself and try to do some walking in the Great Outdoors, aided and abetted only by his two trusty sticks. His other half, Janet, was not easily convinced it was a good idea, but loving partner that she is, she relented and drove him a (relatively short) distance into the countryside. “I’ll come back to this very spot and pick you up in an hour, no later” she declared with loving finality. At the appointed hour she returned …but there was no sign of her intrepid partner. As the minutes passed, Janet’s worries turned inexorably to fear — had he fallen? Had he got lost in the wilderness? Had he been snatched by aliens? After a fruitless search and now close to panic, she rushed home and began ’phoning anyone and everyone, from friends and neighbours to the police and local hospitals. Nothing. Ziltch. He had disappeared from the face of the earth. And then the front door opened and in hobbled Michael, beaming from ear to ear and proud as punch that he’d decided to set himself a challenge and walk all the way home. It had taken a little longer than expected because he’d met a 90-year-old friend he hadn’t seen for a long time and had stopped off at his home just around the corner for a cup of tea and a chat. Michael’s funeral is next week — or was that just Janet thinking wishfully about her errant husband? Next time, Michael, buy a mobile phone and let Janet know what you’re up to. But well done for managing to walk so far! And so it only remains for me to wish you a Happy Christmas, and a healthier New Year.

November 2005

My newsletters have often begun with an apology for the length of time since the last one, but I don’t think it has ever been nine months. Which leads me on nicely to congratulate Darran and his wife on the birth of their third child. New members this time are as follows: Julie W, Midhursrt, W. Sussex; Tony R, Bramhall, Cheshire; Olivia G, Hull; Brenda W, Hull; Adam D, Ipswich; Pete M, Kings Lynn; Nicola B, Hedon, East Yorkshire; Janis M, Glasgow; Dawn C, Bucknall; Janet S, Marlbrough, Wilts; Rhima M, Oxford; Maureen B, Malahide, Co Dublin; Davina N, Kent. By the way, if you move home or change telephone number, will you let me know as it is a heck of a job tracking people down. We now have another name to add to our mailing list. It is an organisation called Contact A Family – Rare Disorders (I mentioned them in the last newsletter).Their email address is www.cafamily.org.uk They deal with a lot of charities, large and small — including ours. So if you want to have a look and see what information they have about us, then you have their address. The hope is that they will enable charities to swap helpful information. Did anyone spot the deliberate mistake in the last newsletter? I spoke about an awful article written in my local paper. I went on to say that my son Christopher would have made a better job of it, even though he has dyspraxia. Well, yes, he does have dyspraxia but he also has dyslexia. So my comment about the word being so difficult to spell obviously related to the latter condition. That sounds as clear as mud to me, but hopefully you will understand it. Awareness raising:
I forgot to tell you that Angela M had an article published in Woman magazine in October. She wasn’t very happy with the ’photo they used but when the story is about a medical condition I guess they wouldn’t want a glamour shot. They did write a good story, though, which is the most important thing. I have been in a local ‘freebee’ recently. Fortunately, it is a big glossy magazine and covers a fairly large area (I think all of East Yorkshire must know about SMS by now). I am beginning to wonder when people are going to start asking me for my autograph. Who knows, the paparazzi may be camped outside as I write! Of course, if they were, they wouldn’t have to chase me, as I can’t get up much speed pushing a three-wheeled-walker. I have also written a 2,339 word article, with the help of Pam Sawtell’s knowledge (Prof D Leslie’s former research nurse), and my other half, for his (alleged) journalistic talent, for The Journal of Diabetes Nursing. Lastly, an article for Real magazine. It was published in October — did any of you see it? I also emailed ‘This Morning’ asking for SMS to be featured in their rare conditions slot. But I have heard nothing back from them. One or two questions from members: 1) Has anyone used a baclofen pump? 2) Does anyone have breathing problems, and if so, does anything help? We all have good days and bad days, but do you suffer peaks and troughs? By that I mean do you have weeks where you feel the SMS is getting worse, and then find you improve?. Would anyone like their email address putting in the newsletter? I think it is a good idea, as ’phone calls can be quite pricey. A request from me: If you have the time and inclination, would you email me a ’photo of youself? It would be nice to ‘see’ to whom I am talking. I wonder how many of you have looked at our web site? Tony has done an absolutely fab job. We now have a translator facility. How many people have used it, I don’t know. We also have a message board, so I hope to see some comments from YOU on there! The idea came from Chris H (our opera singer). He donated some money from a concert in which he performed, and asked if we would use it to set up the said message board. We are getting a good response. I believe it helps people, wherever they are, to know they are not alone with SMS. I have had five people email me from Canada. They all asked the same question: “Do you know of a support group in Canada?” I sent them each other’s addresses. Hopefully they can get together and who knows what may come of that? Apart from replying to them, I also get emails from all over the place (mainly the US) which I answer. Cast your minds back to January: Do you remember the awful storms in Scotland? I managed to get in touch with our Scottish members, and they all survived, you’ll be pleased to hear. Which proves my point that they breed ’em tough in the north (apologies to any “soft” southerners!). There is more I could have included in this newsletter, I started it in September but I have had a number of personal problems to deal with over the past few months, hence this rather abrupt ending. However, I hope I can get things sorted by the time the next newsletter is due.So it just leaves me to wish you all a happy and healthier Christmas and New Year. To those of you who do not celebrate Christmas, have a good rest so you will be ready for 2006! Best wishes.

December 2006

Hello All. As usual  we will start with new members: Janet O, Litchfield, Staffordshire; Samus R, Lough Duff, Co Cavan. Eire; Helen F, March, Cambridgeshire; last, but by no means least, Carole A, Epsom Downs, Surrey. Nicola B has moved house and now lives in Paull, East Yorkshire .   There is another email address you can add to your list — his name is Jim Riley. We have been in touch every now and then for a few years. He lives in Australia. It may be the other side of the world in miles, but only a click away in email terms. Anyway, he would love to be in touch with some of us. You can cross Pat D, Driffield, off your list, as she has been told she does not have SMS. Let’s hope whatever she does have is not as ’orrible. Well, I don’t really know where to begin. It has been a year (again) since the last newsletter. Please don’t think I have given up on you, quite the contrary. SMS work has taken up so much of my time, it seems the newsletter keeps getting further on the back boiler. Back in June I registered our charity with room 102, another charitable organisation. Their address is  bristol@room102.org.uk  We are also registered with Guidestar, their address is guidestar.org.uk  They have a list of all charitable organisations, so if you have any other conditions, you can look up information on this site. GPs v patients’ use of diazepam: A few of you have told me, despite being prescribed it by your neurologist, your GP is very reluctant to keep prescribing it. If you are affected in this way, remember your neurologist has the upper hand. GPs are often very reluctant to give diazepam (Valium) because it is addictive. As we are going to be on it for the rest of our lives, the addictive element does not hold water. Which leads me nicely on to raising awareness. Why not give your GP our web address? That way he/she can read up a bit more on SMS. If any of you have looked at the site recently, you will see I have put a lot of the symptoms we endure in the box named ‘What is SMS.’ I really can’t emphasise how important this small act could be. As I said earlier, it will raise awareness, and also give your GP a better understanding of what you are going through.I don’t know where I heard this, not Oscar Wilde, Shakespeare or the bible — surprisingly — (if you enter a quiz, one can usually take a stab at one of those three). There is a saying in medical school: ‘What doctors look for’. “When you hear hoof beats, think horses, not zebras”. In other words, consider the obvious first, because most illnesses are going to be commonplace, ordinary ones. Obviously we are all zebras! I will make sure I am wearing something black and white and stripey the next time I go to a fancy dress party. In July Eloise came to stay for a couple of weeks. During that time we went to the celebrations of the 25th anniversary of the opening of the Humber Bridge. There were lots of charity stalls and I kicked myself for not thinking about having booked one for us. Not one to pass up a chance, I approached the Humber Rescue team and asked for their help. To cut a long story short, (the longer version is on the web site, under ‘Our stories’) we left with £40. I also found someone to video the antics. Is there no end to my cheek? Unfortunately, Tony is unable to put it on the web site. It’s something to do with the format, well that’s what he told me and I’ve no idea as I’m completely technophobe (it’s true — Dave). Personally, I just think he is too lazy (why did I write that? After all, he is our treasurer and web guy, and of course receives a copy of the newsletter). By the way, future newsletters will not be called newsletters, simply because there is never any SMS news. We, the committee, have come up with a better name, but you will have to wait until next time to find out what it is. I feel a little competition coming on. If you can guess what it will be called, or if you can come up with something better, there will be a cheque for £20 winging its way to you.£40 was small fry in comparison to the event we held in October. With help from a friend in the music business, we hired a village hall. Two bands were the entertainment, one of which was a tribute band to the Kinks. We held a raffle, an auction and sold donated alcohol. David was the auctioneer. Everyone had a fab time and we made £972! I still have more things to auction, However, I am not sure when I will get around to organising the next event. It would have already happened, but we went on holiday at half term, and three days later I got bronchitis. One of our new members, Helen F, had her story featured in two of her local newspapers. The next thing she knew the Daily Mirror wanted to run a feature, which they did on November 15th. Despite her insistence that they include our web address, they didn’t. Any awareness raising must include this information or how will anyone know of our existence? I have probably mentioned David is a journalist. He works for the Press Association and in a managerial level deals with most newspapers, magazines, Ceefax and Teletext. I found it quite amusing when he told me he had had a rather heated argument with the managing editor of the Mirror, and finished the conversation with “Oh, by the way, can you do me a favour. Will you put the SMS website address in?” I had a call from the said paper the next day, and gave him the details, however it can’t have been in, as I have not had a single call. Ho hum. Helen also has a couple of fund raising events planned for the New Year. At this point I have to say, Anthony (Helens’s partner) — you will get over the pain, honestly. If any of you, your family or friends, are willing and able to either raise awareness or do any fund raising, please give it ago. It can be fun, and I don’t have to tell you how important it is. In fact there is a women’s magazine waiting to do an SMS feature, so if anyone will volunteer, please get in touch with me.We are also looking for a patron and sponsor(s). Do any of you have any suggestions? You didn’t have a ‘Picture this’ in the last newsletter, but I have one this time. Picture this....Thursday afternoon and a middle-aged woman is contemplating the friends she will be entertaining on Saturday. Should she do the ironing? No, she can stick it in a cupboard. Should she try and get the stain out of the carpet? No, her cleaner will do it tomorrow. What she wants to do, what she really wants to do, is sand down the door frame and get it painted before Saturday. Conveniently forgetting her promise not to use steps when alone in the house and armed with a small drop of Dutch courage (aka vodka), she embarks onto the second step. All was going well until the moment her back decided it would rather she was doing the ironing or removing the carpet stain (it’s a very naughty back; it could have whispered the request instead of yelling it). So having dropped the sandpaper, she used her left hand to hold on to the top of the door. Attempts to reunite herself with terra firma were quite time consuming. After trying a number of options (most of which Houdini would have failed at too), she decided to press her lifeline button which she had around her neck. Only after having pressed it did she realise that when the ’phone rang, all they could hear was a Bob Dylan CD playing rather loudly. Despite shouting, they could not hear her. Three buzzes later she got a response. Help, in the form of a neighbour, arrived. When he ‘walked’ in all they could both do was laugh. She was stuck in the doorway up a pair of steps, and he was in a pair of pyjamas, one sandal and a set of crutches. Apparently he had been in bed, as he had had an operation on his foot the day before. It took a while for the two to get the situation under control — and then the big guns arrived — an ambulance (blue lights flashing, sirens going) and two paramedics. Apparently, the neighbour now has a ‘for sale’ sign outside his house, and the ambulance service have been advised not to attend that particular address again. Thank you to the people who sent me photographs. However, there are an awful lot of you who haven’t. I can’t have a rogues gallery with so few pictures. Please put it on your list of things to do. It just remains for me to wish all of you who celebrate Christmas, a very happy one (that is the first, and probably the last PC thing I will ever write or say). Best Wishes for 2007. PS. Don’t get drunker than me over the festive period (if that’s possible…).

June/July 2007

Hello one and all. I began writing this on the summer solstice, and in this part of the country we are suffering floods. In fact, I was watching the local news and saw a man paddling down his street in a canoe! Why, when we all told about global warming, did they omit to mention all the flooding? You will see the ‘newsletter’ heading is defunct. We are now going to call it ‘GADabout’ (Glutamic Acid Decarboxylase). The ‘about’ bit just seemed to fit, which is why we used it. In the last newsletter, I asked if anyone could come up with a suggestion, as ‘Newsletter’ was not really appropriate, because I never have any SMS news. Nobody got in touch with a suggestion, therefore the £20 prize money will stay in the bank. On to new members: Stewart A, Stevenage; Angela J, Keighley; Sharon G, Norfolk; Graham A, Brentwood; Phil M, Eastleigh, Hampshire. On to the subject of addresses, I have ’phoned a couple of people only to find they have moved. I know I have mentioned this subject before, but if you do move or change your number, will you let me know? Some sad news, I’m afraid, Alan J, from Gloucestershire, has died. Apparently he was misdiagnosed — he didn’t have SMS, it was motor neurone disease. I rang Diane C, also from Gloucestershire, recently only to find she too had died. I was obviously shocked by the news. I know she had had other serious medical problems, but I didn’t ask any questions. The last communication I received from Diane was a letter, written in the March. She died in the April. In her letter she wrote some very kind words to me. Those words, and of course communication with a few other members, give me reasons to carry on, relentlessly, with this group, despite the fact I sometimes feel more alone than I did when I first started the support group back in 1998. It seems whatever questions I have asked in past newsletters, the response is always nil. I understand some of you are too ill to respond, and that not everyone has a computer to get in touch by email. Perhaps no one is really interested, but…ces’t la vie. I don’t think I had better say anything else or I am sure you will all desert me — even more! Actually, I wonder if anyone realises how much time I spend trying to raise awareness, not just in the UK, but also all over the world. Since the last newsletter, we have held a ceildh to raise our bank balance. We still need a sponsor and a patron. That is still on my “to do” list. If anyone can help, please get in touch. I’m so sorry this letter has started so sarcastically. My only excuse is that I have had an SMS-wise horrid month, so please forgive the selfish ranting... On to travel tips. If you use the blue badge scheme, you might be interested to know that the government has launched an online map of more than 64 cities showing disabled parking bays. The mapping facility is the first of its kind and should be a really useful resource if you are visiting other towns and cities. You can look at the map online at www.direct.gov.uk/bluebadgemap  Another interesting web site is www.yourlevelbest.com  They have compiled an online list of thousands of pubs and restaurants throughout the UK that are wheelchair friendly. I believe you need to need to enter the postcode of the area you wish to visit — so make sure you have that to hand before you go online. Still on the subject of computers, you may be interested to know about ‘Everyclick’. You can now raise money for SMS every time you search the internet without it costing you a penny. All you need to do is use Everyclick — a search engine that donates half its profit to charity. If you visit the site at www.everyclick.com and register Stiff Man Support Group as your ‘selected charity’ then use the site for all your web searches and, each time you do, you will automatically raise money for our group. If you can, please register, and ask your family and friends to do so too. I am not sure it is as good as Google, but if you are on broadband, and have the time to use ‘Everyclick’ first, then you will be putting a bit of cash into our bank account. Did any of you see the article in the June edition of Top Sante? It was Ok-ish. At least it was another attempt at raising awareness of SMS, and we are £75 richer — £25 more than was initially agreed. However, I have one complaint — they still haven’t sent my ’photo back (it was ‘the nice one’ of me, which they didn’t use). I had an email from an employee of Orphanet. It is an agency that’s interested in promoting rare conditions. When I looked on the site I found it was aimed at professionals rather than the general public. The organisation is based in Paris and encompasses Europe. I got in touch with the British contact and told her the site should also be available for the non-medics to read and understand. To cut a long story short, she asked me to write a layman’s description of SMS (why do I make more work for myself?). So that is the next thing on my list of things to do. I did discover there are two SMS support groups in Europe, the Germans and us. I have been in touch with the German support group and once we have overcome the language barrier, we are hoping to have a mutually beneficial tie. I, like some of you, have a carer. If anyone feels they would benefit from this service I would just like to tell you about direct payments. Put simply, direct payments is a cash alternative to having your care services provided or arranged by the council. Instead of the service, you get a cash equivalent and you can sort out your own care, either by using a care agency, or by employing your own staff. The money is to buy care. It is not an income and so is not taxed, and it does not affect your benefits. You will need to contact Social Services, who will then assess your needs. Obviously you know what it is you want/need. The advantage of receiving direct payments as opposed to Social Services is that you choose who you want. Using Social Services means ‘new’ faces a lot of the time and, of course, there is no telling who will turn up, or even if they will arrive at the time you need them — not a good set up for an SMS sufferer. Digressing for a moment, I will tell you how it worked for me. I was assessed by Social Services and it was decided I was to have 10 hours per week. I told them it would not work if I didn’t know who would be coming, which is why direct payment is invaluable for someone like me who sufferers with anxiety. The next step was being financially assessed. We were assessed as a couple and individually. Don’t let this put you off. Although David is a high rate tax payer we do not pay for the service because the assessment was based on my income. The next step is to write an advert for your local paper, which is paid for by direct payments. You may already know someone — but not a close friend, as it can put a strain on the friendship. What I said in my advertisement ended with “Must have sense of humour”. I honestly believe that is why (apparently) I received more application forms than anyone at the direct payments office had seen before. I didn’t want someone who would be giving me the sympathy angle, and wanting to call me “dear” etc. I wanted someone who would help me do the things I wanted to do. There really isn’t much more to it than that, but if you want to know any more please give me a call. I have enclosed an SMS business card with this letter. The idea is that you can give it to your GP, consultant or anywhere you think people will show some interest. If you are able to photocopy it, you will be able to give a copy to as many people as you like. It is a form of raising awareness in the public sector and the medical profession (as we all know, the medical profession is not always as knowledgeable as we would like them to be). If you get a chance, please give our web address to anyone, anytime, anyplace, anywhere. Blimey, I sound like the advert for Martini. Some of you will know I am trying to get the questionnaires completed. I am only about half way through. I am trying to do one each day. Originally the questionnaires were for Prof David Leslie, but sadly, despite their efforts, they are unable to obtain further funding. Having started the questionnaires, I believe they may be useful, not only for Prof Leslie, but also for other Professors involved with research. The main reason is that there are many papers written about SMS, but none of them describe some of the symptoms we endure as the years go by. When I have finished I would like to send the results to consultants who are researching SMS. Of course all the information will be anonymous.  Finally ‘Picture this’...Ken is a lovely man who is more or less confined to his bed, a place of rest and relaxation that does almost everything apart from make coffee (which if it did would, of course, be served by a beautiful French waitress — actually, that was an option, but his wife Margaret didn’t tell him…). To make life easier, Ken and Margaret had French-windows built to allow him the luxury of having his bed pushed in to his beloved garden, where he could watch the birds and other wild life that pop in and out of the garden. One day, Margaret went out to do some shopping — and completely forget she’d left Ken in gentle repose in the garden. What could be nicer than being in the sun with a glass of vino and a good book? She’d also forgotten to check the weather… yes, you guessed it — the heavens opened with a vengeance and poor old Ken was almost washed away!Fortunately, apart from a wet bed (he hadn’t experienced that since he was a child…) no harm was done other than to Ken’s pride. I suspect Margaret must have felt a little guilty, as Ken had his favourite meal cooked to perfection that evening, served with a loving smile (although she did draw the line at being dressed up as a French maid!). Just to be on the safe side, the couple have now invested in an awning…Good health to you all.

December 2007

Hello fellow sms-ers! Well, here we go again. What do I write about? Oh yes, new members first: Andrea T; Marion A; Janice N; Gail T; and David D. I have not given the usual details as I have included a (hopefully) up-to-date list of members and their details. There are now 92 members (as far as I can tell). However, the following are, despite my detective work, not to be found. They are Fiona M; Davina N; Craig F; Carol S; Lynne M and Sharon K. If any of you know of their whereabouts, or are in touch with them, will you ask them to contact me? Michelle L has told me she was misdiagnosed and therefore does not have SMS. I was talking to one of the members the other day and the subject of people moving and not letting me know (how dare they!) came up. The suggestion was made that you put my details in your address book. That way I will be included in the people you write to, or ring, to let know if you should move. In the last GADabout, I sent you all a card with details of the web address etc, to hand to any interested parties. So why, oh why, did my email and the web address then have to change? It was due to the service provider, and speaking as a technophobe that is about as much as I understand. If anyone logs in to the old web address, it will take them to the new site. We have had a donation of £171, thanks to Philip B’s family. Their local church held a quiz night, and we were the fortunate recipients. I would like to say thank you very much on behalf of the charity. I have spoken to a number of members while I am ploughing through the questionnaires. When the original research programme stopped because of funding issues, my efforts slowed down too. However, a new research project will be starting and I am going as quickly as I can to finish them. Obviously, no names will be submitted. I was speaking to one of the members not long ago and she asked me what the committee discuss when we meet. Good question! I have never actually mentioned such things, so here goes: Our last meeting was on June 2nd. The members are Vanessa (Chairman), Yours Truly (Secretary), Tony (Treasurer) plus Pam, Del and Steve. Vanessa reported that the ceilidh she organised raised £675. I have re-registered with numerous charities and organisations. Tony has designed a form, which is now on the web site, to enable people to give to the charity. I was in touch with the German support group, but since my email address has changed I have had no communication from them (I will try again when I get the time). We have decided to reduce the amount of fundraising events as they are so very time consuming. Pam has booked a place in the London marathon for 2009, the cost of which is £300. So if anyone knows of a runner who will support us (as usual) please let me know. As I write, the SMS bank balance stands at just over £3,000. If anyone you know could add a naught to that figure, I think the research team and we would be happy enough to be the happiest folk around. We have opened an Instant Access high interest account. At the moment we receive about £6.50 per month interest. There was nothing else of real interest to mention here — mostly what we would like to do, plus gossip of course. If anyone’s interested in either joining the committee or just coming along to the meetings, they would be more than welcome. We hope the next one will be at the end of January. Now for the old favourite, Picture This…One of our younger members has had an on-going friendship online with a girl from foreign soil for some time. Naturally, the friendship began to blossom. It started with one ‘X’ at the end of the message, but over time got up to three... A recent message from our member was written asking: “Will you marry me?” Obviously the girl was already truly smitten and her reply came back in the affirmative. She heard nothing via the computer and decided to ’phone him. His flat-mate answered and offered his congratulations, opened a bottle of wine with which to toast the occasion, and went in search of his friend, only to find him on the floor in the midst of a hypo. It was touch and go which came first — the member coming out of the hypo or the red wine having had time to breathe! Funnily enough, I still don’t know if there is going to be a wedding…On that note I shall leave you with a 2,000-year-old old message: Have a Wonderful Christmas and a Healthy and Happy New Year. Best Wishes, as always.

1. Michael, East Yorkshire
2. Jacqui, Northumberland
3. Susan, East Yorkshire
4. Carol, Surrey
5. Stewart, Herts
6. Graham, Essex
7. Marion, Kent
8. John, Birmingham
9. Margaret, Bristol
10. Fiona, Oxfordshire
11. Leanora, Lancashire
12. Jackie, Somerset
13. Philip, Northumberland
14. Don, Bristol
15. Malcom, Cornwall
16. Nicola, East Yorkshire
17. Maureen, County Dublin
18. Lisa, Birmingham
19. Jenny, East Yorkshire
20. Margaret, Norfolk
21. Geoff, Norfolk
22. Dawn, Herts
23. Jean, Norfolk
24. Yvonne, West Yorkshire
25. David, Manchester
26. Jane, Hampshire
27. Adel, Lincolnshire
28. Jo, Derbyshire
29. Adam, Suffolk
30. David, Staffs
31. Mary, Shropshire
32. Michael, East Yorkshire
33. Ros, Norfolk
34. Helen, Cambridgeshire
35. Howard, Essex
36. David, Cheshire
37. George, East Yorkshire
38. Jodie, Cambridgeshire
39. Olivia, East Yorkshire
40. Sharon, Norfolk
41. Stephanie, Birmingham
42. Lucy, Hampshire
43. Roma, Cornwall
44. Annette, East Sussex
45. Leslie, Fife
46. Rachel, West Yorkshire
47. Janet, Cambridgeshire
48. Jane, East Sussex
49. Chris, North Yorkshire
50. Jane, South Wales
51. Margaret, Staffs
52. Angela, West Yorkshire
53. Claire, Kent
54. Joyce, Norfolk
55. Brian, Oxfordshire
56. Vivian, Derbyshire
57. Angela, South Wales
58. Margaret, Scotland
59. Myra, Kent
60. Melanie, West Yorkshire
61. Tommy, Manchester
62. Moira, Scotland
63. Andrew, Derbyshire
64. Pete, Norfolk
65. Janis, Glasgow
66. Rhima, Oxfordshire
67. Phil, Hampshire
68. Janice, Bristol
69. Janet, Staffs
70. John, Hampshire
71. Colin, East Yorkshire
72. Tony, Cheshire
73. Samus, County Cavan, Ireland
74. Ian, East Yorkshire.
75. Liz, Perthshire
76. Brenda, Bristol
77. Marion, Kent.
78. Kenneth, Derbyshire
79. Janet, Wiltshire
80. Darran, Devon
81. Mike, East Yorkshire
82. Kenneth, East Yorkshire
83. Christine, Surrey
84. Andrea, Devon
85. Gail, Scotland
86. Pat, Somerset
87. Mwynwen, Dumfrieshire
88. Carol, West Yorkshire
89. Beverly, Birmingham
90. Sharon, Lincolnshire
91. Julie, West Sussex
92. Brenda, East Yorkshire                                                                                                          
    

July/August 2008

Hi All. As usual, new members first: John,, sussex; Paul, Lincolnshire; Gordon, Suffolk; Steve, Somerset; Lee, Birmingham; Sue, Leighton Buzzard; Ruth, Wiltshire; Carol, Norfolk; Morag, Scotland; and Claire, East Yorkshire.

Some lovely news now — congratulations to David and his wife. They have just had their first baby. Baby David came into this world weighing in at 10lb.

As you know, I have been doing a questionnaire for research purposes. Up to now I have got 67 SMS sufferers on the computer. Obviously there are no names included. It is quite enlightening to see what we have in common and the ‘quirky’ things which apply to each individual. When I have finished, you will get the results via a GADabout.

Are you all aware about the tax banding? If there is someone in the house who is registered disabled, then apply to the council and you should drop down a band. Not a terrific saving, but better than nothing.

Perhaps a delicate subject, but nevertheless I am going to tell you about it: I know some members use cannabis for pain relief — and quite possibly spend a lot of money in the process. I wonder if you are aware of a cannibinoid spray called Sativex? It is used in Canada for people with MS. Although unlicensed in the UK, it is available from a consultant or GP on a named patient prescription basis. I have only seen the effects on one of our members but it was quite remarkable. He has been using it since March and it has enabled him to cut down on some of his SMS medication. He tells me it has reduced his pain, and that he feels ‘looser’.

If you want to read up on it on the web, the address is www.videojug.com/tag/medical-marijuana-doctor I am writing about this for information purposes only as I have not tried it, therefore I don’t have first hand knowledge of the product. Do any of you look at our web site? I ask only because I know some of you may have financial problems which prevent you from getting something which may make life a little easier. We have a form called ‘Application for discretionary grant aid’. If you download it, fill it in and send it to me, it will go before the committee for consideration.

I have to correct something I said in the December 2006 newsletter. I had told you that your neurologist has the upper hand when it comes to prescribing drugs. Well, it seems I was wrong. If your neurologist prescribes something and your GP is not happy about giving repeat prescriptions, then you may have to keep getting it from your consultant.

Now for the bit you’ve all been waiting for: Picture this ….a beautiful day in August. A woman alone who wanted to be left alone, sipping by the sea. It was, she thought, a sort of ‘Shirley Valentine’ day. She knew she was unlikely to meet Tom Conti, but that didn’t matter — although it would have been nice. Instead she was dragged, kicking and screaming by numerous members of her family, to an event with a name that sounded like boredom incarnate: Military Mayhem. She had no interest in war things, but the family was determined to take her.

So, for the entire two hour journey, she sat in the car with a face that would sour milk. When they arrived, one enterprising member of the family said he knew of a short cut. What he failed to mention was the fence that had to be climbed first — not that easy with a wheelchair... But with military precision the unwilling participant was hoisted over in a fireman’s lift and the wheelchair was quick to follow. The event proved to be much bigger than our reluctant heroine had expected, and she was forced to admit the sight of all the men in uniform did bring a smile to her face, despite the family using her wheelchair as a dumping ground for everyone’s detritus, from jackets to shoes, handbags to half-finished bags of doughnuts.

As the day wore on, the previously unwitting victim of the day out hijack really started to get into the spirit of things. So much so that when the war games were about to begin she was really up for it. The only problem was this rather steep mound which had to be traversed…The ascent began well enough but tragedy was to strike — half way up and the wheelchair-pushing brother lost his footing. In wonderful slow motion, down came the brother, the SMS sufferer, the wheelchair and all the assorted paraphernalia on the wheelchair. As luck would have it, there were no broken bones only an embarrassing loss of dignity for the once reluctant day tripper. And some very wet pale green knee-length shorts (the ground was somewhat damp before you all jump to the wrong conclusion!).

Make your own mind up on that last statement. As the sorry bunch traipsed disconsolately towards the exit, their chagrin was compounded by a passer-by who mentioned, en passant, that if they had gone round the corner, the ground was completely flat…The brother whose well-intentioned plan went so awry was last seen scurrying for cover and has not been seen since.

PS I began this in July, but with so much else to do, it may be October before you get it, which will be the 10th anniversary of the group. 

April 2009

Hi Fellow Sufferers!

I am starting this letter in March and desperately hoping I will manage to get it out in April.  I do feel guilty that I am only sending out two GADabouts a year. Help! I need a secretary — any volunteers?

This is the first time I have started a letter without first giving the new members’ details. Talking of which, here they are: Sara, Kent; Sharon West Yorks; Kevin, Herts; Robert, Lincolnshire; Madeleine, Pembrokeshire; Melvin, Midlands; Sharon, Hants; Louise, Birmingham.

Sadly we have lost one of our members, Mary, Kidderminster. I have sent a card to her husband and family on behalf of the group.

It occurred to me the other week that my husband David didn’t know what medication I take at given times of the day. Do your family and friends know what medication you’re on? I did mention in an earlier newsletter about carrying the information with you. If you were involved in an accident and admitted to hospital, you wouldn’t have a hope in hell that anyone there would know anything about SMS when many members have had problems finding a neurologist with any knowledge of our condition. At the end of the day, it is vital that you maintain your medication, even if unconscious.

Still on safety issues: For those of you who have mobile ’phones and do not know about a helpful device called ICE, I will explain how it works. ICE stands for In Case of Emergency. You put ICE in the name part, and then the number of perhaps your next of kin. You can put as many in as you want, - ICE2, ICE3 etc, but make sure they know the medication you are taking.

A couple of things for the diabetics (48% of us): It’s a myth that diabetics can’t wear flight socks, providing you don’t have any circulatory problems in your feet, such as neuropathy or ulcers. If in doubt, ask your GP. 

For some time now David and Chris have both told me that my hearing is going. To be honest I believe it’s a case of both of them having selective hearing. If I tell them food is on the table they hear it, but if it’s a request to put things away or do something useful, they don’t. Anyway, that apart, I read an article relating to hearing loss in diabetics: “Out of 399 people with diabetes, 21% had a mild or greater level of hearing impairment for low to mid-frequency sounds in their worst ear, compared to 9% of non-diabetics.”

On behalf of the group I would like to thank Janet for her donation of £20 and to Les for his of £100. I would also like to thank a woman I met on a train who (to cut a long story short) sent a cheque for £50. Awareness raising really does work. I would also like to thank Jane for organising a sponsored walk over various bridges in her area which resulted in a tidy cheque for the charity of £1,115. Well done Jane!

This now leads me on to a rather awkward bit. I hadn’t realised how much David contributes financially to the group (he has never told me until now). He pays the annual fee for providing our web site as well as the broadband connection we need. We are now in the situation where he can’t continue to do this as he is has been made redundant.  I know I have asked before, but if any of you or your family and friends can do any fundraising it would be fabulous. I am not asking for donations from fellow sufferers, as welcome as that is, it kind of defeats the object. Perhaps some of you may know of someone who would be in a position to help?

We have a silver bond in next year’s London Marathon and were invited to attend a bond reception. Pam and I went. We both left with a good feeling as Virgin are to become the official fundraising website for the London Marathon. Pam’s daughter has volunteered to do the run for us, so please, please can you find people who will sponsor her? One main reason for asking for your help is because research is imminent. There will be another GADabout sent before the event, and I will be mentioning it again. We hope to sign up to Give As You Earn, and to Virgin Money Giving as Virgin will be on hand to help with problems and queries. If anyone can (please) organise a fund raising event, then let me know in advance, as Virgin will promote it by putting it on their website. If you need any leaflets to help promotion, again just let me know. Okay, I will leave that with you for now.

As important, if not more so, is raising awareness. Since I started the group 10 years ago, the waiting time for a diagnosis, obviously with some exceptions, has dropped considerably from the average of four years. That’s due to awareness-raising. There are now more neurologists who have knowledge of SMS.

In the near future I hope our web site will be brought into the 21st century. Obviously ‘technophobe’ moi will be staying clear of anything other than ideas of what we want. If there is something you would like to be on our site, call or email me with your ideas. This will cost the charity but I don’t know how much as yet as David is waiting for feedback from the web designer.

Don’t forget to keep sending me your ’photos. When I have enough, perhaps I will never have to decorate my study again as it will be covered with pix of you lot!

We have just had our bi-annual committee meeting and need more committee members. Legally we have to have a proportion of sufferers. If anyone will volunteer, it will make me very happy. Any member of the group is welcome to ‘sit in’ if they so wish. The next meeting should be in October, so just give me a call — naturally I will ’phone you straight back to save on your bill.

And now: Picture this: A beautiful sunny morning somewhere in southern England. A young woman steps out of the shower, brushes her long hair and applies her make-up. “Yes” she murmured to herself, “I look good, even if my back is giving me hell”. As she rested for a moment before going downstairs to prepare breakfast for the family, the bathroom door suddenly burst open and her faithful Shitzu hound bounded into the room and leapt up to greet his mistress whose startle response was triggered and mouth and mutt met full on, smashing a front tooth from our owner’s mouth and leaving the dog with a lipstick-covered mush. In seconds it was all over, but where was the tooth? The Shitzu’s, er Shitzu, is being studied to this day in the expectation that nature will take its course and the missing tooth will re-appear…