I have been assessed for a wheelchair, and it has arrived. Why am I so pleased? Anyway, it folds up and will fit in the back of the car. It is not as easy to use as I thought it would be. It's OK on the flat, but even a slight incline is difficult. Still, as I don't go out alone there is always someone to push it. Wheelchair Olympics next!
I was right about the Tizanadine. I don't feel I am as stiff as I was when I was taking it. Unfortunately, that does not mean I don't get stiff anymore. Ho hum.
I have been working at home as a volunteer for a local charity, APPD (Association for People with Physical Disabilities). They have published an article I wrote for them about SMS, which led on to finding another new member for the group.
Via the CVS we now have charitable status. Hurrah! I and other members of the group are trying to raise money, for research. So far I have only written (again) to Richard Branson. It's tiring work trying to write begging letters. Sadly, I received (yet another) "Sorry, but no" from Sir Richard. It makes me wonder a) what am I doing wrong and b) is our illness too rare for anyone to care about?
I saw Dr Walton. He told me I now have hypothyroidism (third autoimmune disease — how lucky am I?). I am now taking thyroxin 50mcg daily.
March 25: I received a call from a new sufferer, Jane. I spoke at length with both her and her husband, Clive. She wanted to join the group and be part of the research programme at Barts hospital. I (as I always do with new members) sent her copies of all past newsletters and informed Barts. On Sunday 31st I got a call from Clive informing me that Jane had died the day before. She was just 42. She is the second member of the group who has died since I began running the support group. How very, very sad. I must say here and now, though, that neither death was directly SMS related but that took nothing away from the grief everyone felt.
I was talking to Howard, a group member. The subject of birthdays came up and I told him it was my 50th on March 24. I was astounded to receive a beautiful bouquet of flowers delivered from Jersey. Having said that, I still get a warm feeling inside whenever I get letters or cards from members showing their appreciation. It lifts my spirits and keeps my determination at full strength.
I received a call from Jane's undertaker stating that Clive had asked for no flowers, but instead wanted donations to SMS research. What a kind gesture. Especially as, after all, we had only spoken on the 'phone twice, and had never met.
April 3: Christopher had his friend Adam here for a sleepover. By 9.30pm I was finishing off my Uni exam paper, which had to be handed in the next day. Eloise, Christopher and Adam were charging about as kids do — despite my yelling at them to be quiet. 10.20pm and the telephone rang but I really could not afford the time to talk. However, the caller was determined and kept on talking. 10.35pm and I saw Christopher walk past the office and up to the loft with a bottle of Jiff in his hand. Hmmm. Alarm bells ringing? You bet. I went up to find the room full of boxes of toys, books etc, and three children scrubbing the floor where they had spilled some 'won't come out, no matter how much you try' ink. It was the last straw, I yelled at them for making such a mess, for spilling the ink, for making such a noise when I was trying to work (and anything else I could think of)! What they didn't tell me was why they had taken everything up there, but it became (embarrassingly) apparent the next day.
I had told the kids a few days earlier that although the group had achieved charitable status, there was no point in me opening a bank account as there was nothing to put in it. It seems they were listening…next thing I know they had sorted through their toys and books and were determined to hold a car boot sale in the garden! They made posters and stuck them to lampposts advertising their tabletop sale, to be held that day and the next, in aid of the SMS charity. I only found out what they were doing when I saw the garden furniture being moved into the front garden. Five minutes after they had started, Christopher came running in to tell me they had made Ј5.50.
Apparently, he had stopped a passing car and asked the poor woman to buy something (I wonder who he gets that cheek from? Not me, obviously). The kids asked for a volunteer to sit and have a wet sponge thrown at them (10p for four throws). Nobody was forthcoming so Christopher was volunteered. He sat on a chair in his swimming trunks and goggles and quite enjoyed the experience. I felt so proud of what they had instigated and of the way thy got other local children involved, I had to do something to thank them. I rang the Hull Daily Mail, gave them the story and they sent a photographer round the next day.
The story was published, but there were so many errors that I rang the paper to complain. Fortunately, I knew the reporter whose name was attributed to the article (even though she had not written it). She said that if enough interest were shown in the article she would do a follow-up story. Naturally I 'phoned all members living in the area the newspaper covered and asked them to ring the Mail demanding more information! The following day I got a call saying the Mail would like to do a follow-up story — bingo!
I also received a call from a woman telling me she thought her horse (of all things!) might be suffering from SMS. I felt sure it was a wind-up, but in fact it wasn't. I rang Barts hospital to tell Pam about it and she told me that there is an equine form of SMS. The spooky thing is that she and Professor Leslie had been discussing it less than two weeks previously.
Late one afternoon and I was on my way to have a shower and walked along the landing. As I reached the top of the stairs, the usual feelings of anxiety started. Why can I walk along the landing and feel safe, but as soon as there is a gap (the staircase) I feel so vulnerable? I held onto the newel post for support. The top airing cupboard door, which is at the other side of the stairs was open, I took hold of it, but stupidly grabbed the handle, which is quite high up. Standing facing the top of the stairs with my arms in a five-to-three position meant I could not move. The only thing that was moving was my back. It was in spasm. It felt like someone kept taking penalty shots (my back being the goal). And nobody was due home for at least an hour.
I tried to keep calm by listening to, and answering questions out loud, to The Weakest Link, which was on in the kitchen downstairs. I knew I had to do something, as my left arm was beginning to get pins and needles, but what? The upstairs windows were open, so I started to shout for help. It started with a whisper, because I felt embarrassed and have never shouted for help before, but it ended with decibels normally associated with a rock concert. Deep Purple eat your hearts out! Unfortunately (surprisingly) no one heard me. Eventually the spasms eased and I began to calm down enough to shuffle my feet to the left and slowly move my right hand onto the airing cupboard door. I then collapsed onto the floor. Thank God I was now safe. I looked at my watch and realised I had been stuck for 45 minutes. It had seemed like an eternity.
I went to the Playhouse in Beverley last night, one of my favourite venues to see live music. Barry Nettleton (the owner) said he had read the latest article in the local paper and offered me the use of the Playhouse to raise money for SMS. I couldn't believe it. So, I now have the task of finding a selection of bands to play (another Everest to climb). Sadly, it never came to fruition as he had been drinking when he made the offer, and when I approached him a short time afterwards he couldn’t remember having said anything. *******!!!!!!!!
I went to Morrisons supermarket with Christopher. My back was quite painful but I thought I could manage. We hadn't got very far when I realised I could not walk another step, and had to ask for a wheelchair. The staff were really helpful. One of the assistants got the rest of my shopping, helped me through the till and took me to the car. She loaded up the car and helped me in. I have been 'wheelchaired' to the car on a few occasions in the past, but I have never had to use it inside the supermarket before.
It has been one of those days today. I was late for my art class this morning, which made me anxious (anxiety about things which are not really of any importance, is, as I have mentioned before, one of the symptoms of SMS). I think the anxiety decided it may as well give me grief for the rest of the day, and just for good measure the spasms and stiffness thought they would join in. So, in a nutshell it's been quite a naff day.
I rang the council to ask about the dos and don'ts of charity fundraising in Beverley. I also asked if the Jubilee weekend was free. I could not believe it when they told me it was. So I have both days — the Sunday and Monday! I have bought mini dustbins from the local cheapo shop to be used as receptacles for all the cash the thousands of willing givers are going to donate, and Tony (a group member) is making the labels to put on the bins and flyers to hand out. The great thing is there is so much going on in Beverley on those two days, so hopefully there will be a lot of people around. I 'phoned the local radio to ask for volunteers. The local paper have printed three articles about SMS, to help raise awareness and to publicise the charity event. I am going through my address book to find as many people as I can to help. I have managed to borrow collection tins, draw up a rota for the volunteers, get a parking permit, and put in place all the little things which would enable me to go ahead. It must have seemed like a shark feeding frenzy to my family and other animals!
At last the Jubilee weekend arrived and I nervously approached the market place, praying for the stamina to enable me to get through two days in a wheelchair. Fortunately, the weather was very kind on Day One, as were the football fans as they came out of the pubs — England had just drawn with Sweden. Most of them, at least — two worse-for-wear thirty-somethings suggested I was a poor person and should indulge in sex and travel. No further explanation of this euphemism is necessary.
Everyone else seemed to be enjoying the entertainment, particularly the highlight of the day — The Backbeat Beatles. Some time ago I saw them play, and promised them a chocolate cake when they next came to town. When I gave it to them, I also asked if they would give the charity a mention, which they did, and at one point even paused during the gig, saying they would continue when more people had put money into the charity tins. It worked!
I have a confession to make here. I had a bottle of red wine tucked down the side of my wheelchair. As a result of partaking in a few sips, I found myself much more relaxed and chatty. Actually, forget the chatty bit, as I never need anything to help me talk. Anyway, there I was sitting in my wheelchair listening to the Backbeat Beatles when a guy asked me if I would like to dance. Of course I said yes, but told him he must not let go of me or I would fall. So he lifted me up (in quite an ungainly fashion) and danced/pranced around for the duration of two songs. It was only when I saw David’s face as he was talking to my GP that I sobered up very quickly. After all, I am supposed to be disabled! Anyway, I behaved myself for the rest of the day. Up to this point, I bet you all thought I was a little more demure. Well, it just goes to show, even disabled people can make a complete fool of themselves sometimes. And why not.
The following day it rained almost non-stop and, unfortunately, those brave few who turned out were the same lot from the day before — which meant they had already given. At least, that was their excuse... Nonetheless, it was great fun overall, but I'm not sure I would undertake such an event again in a hurry. We raised a very creditable total of Ј543 — not bad for a first event. We certainly earned it. The charity will use the money to help to continue to raise awareness of SMS. The local paper wrote a small piece about the event, but thankfully made no mention of my antics…
Nothing I have achieved since 1998 would have been possible without the help and support of my husband who has patiently and (usually) willingly got stuck in whenever needed. He may love his car (a Subaru Impreza Turbo) and his dog Ollie more than his wife and kids, but he does a reasonably good job of hiding it…
I have sent out the latest newsletter and a questionnaire and now I am going to have a rest for a while.
Why did I say that? I believe it was just wishful thinking as I'm meeting myself coming back. I got a call from a newspaper to confirm details about an article which Claire, another member of the group, was having published. Surprisingly they 'phoned me back and read me the copy. Thank heavens they did, as they had quoted me saying something that would have had the medical profession coming down on me like a ton of bricks. It just goes to show, it's not what you say, it's the way you say it, and of course the written word does not allow for that. So for a number of days there were 'phone calls backwards and forwards until things were put right/write.
Two more calls from medical information centres asking for any further details about SMS and the support group. It must be New Year at the information collectors' offices.
I have contacted Balance several times over the last two years, urging them to print an article about SMS (after all, 50% of SMS sufferers are type 1 diabetics), only to be told they plan months in advance etc etc etc. So, when I rang them this time, I asked to be put through to the editor. I told him I would make him a chocolate cake — with a cherry on the top — if he would oblige me in my quest for raising awareness. Guess what? Four pages in the next edition. Poor guy, I never did send him the cake.
Tony has set up a web site for SMS sufferers. I can't take any credit for that at all. In the words of the song by Shaggy, "it wasn't me". The only problem is the amount of emails I am receiving from abroad. Although I answer them, I never feel I am of much help. However, on the upside we have gained a few new group members. For anyone in the US reading this, there are four email addresses you could try. They are: email@example.com firstname.lastname@example.org email@example.com and firstname.lastname@example.org
I approached a shopping centre to ask if we could organise a charity collecting day. They told me they did not allow it, but that the money people throw into their wishing well is donated to charity. I was able to collect said money the following week. It was much quicker to drive nine miles, collect the bags and drive home again, than it was counting it. Armed with a pair of Marigold gloves, I began picking out the bits of grit and chewing gum (urgh!). We got over Ј200. Not a bad result.
I had a call from a guy in London who had seen the article in Balance. I don't know why he was reading it (perhaps he was in a GPs waiting room and all the motoring magazines had disappeared). He was working in London, but was from New Zealand, and his mum (Margaret) is an SMS sufferer. I sent him the usual information, which he forwarded to her. A couple of weeks later I got a call from her. She knew of no other sufferers. We are going to keep in touch. It made me think — I don't know of any other country in which a support group exists. At some point in the future I will ask Tony if he can ask that question on our web site.
I have received the answers to the questionnaires I sent out in the last newsletter. There were 35 replies and the results, which may be of interest to anyone logging on to this site, are as follows:
The average age when diagnosis is made: 48.
Length of wait for diagnosis: Average is 4 years.
Of those originally misdiagnosed, depression (or variants of) was by far the most common answer.
SMS medication: Most people take Baclofen (20), closely followed by diazepam (17). Gabapentin (Neurontin) (6) and Rivotril (Clonazepam) (7) were the main others.
14 members are type 1 diabetics.
Eight diabetics said they felt stiffer when their blood sugar is high.
Ten people said they knew of other family members who also have an autoimmune condition (I would hazard a guess that the figure may be higher, as not everyone knows if a particular condition is autoimmune).
I had a call from the CVS. They are the organisation who let us use their charity number. I was advised that in order to satisfy the Charity Commission requirements, we should form a committee and draw up a constitution. As a complete novice, this is probably the most daunting task to date.
OK, I am now going to take the break I said I would take back in June.
Nothing to report, apart from the usual 'phone calls, form filling etc.
This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may be of interest to caregivers, care professionals and researchers, together with advocates for the condition and the general public.
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The group and charity was set up by Liz Blows with the following aims:
(1) The relief of sickness and the protection and preservation of the health of persons affected by Stiff Person Syndrome, together with their families and carers.
(2) On-going education and awareness-raising within the medical profession and the general public of Stiff Person Syndrome.
(3) The promotion of research into the causes, effects, treatment and management of Stiff Person Syndrome.
"Stiff Man Syndrome" (SMS) was the name assigned to the condition when first identified in the 1950s by Moersch and Woltman in the USA. In recent years, in the modern world of PC, the condition has become more widely known as "Stiff Person Syndrome" (SPS). SPS does not differentiate between sex, colour, or creed, although UK evidence tends to suggest women are most at risk.
SPS is an auto-immune neurological condition. It is unique due to its lack of significant similarity to any other neurological diseases. Although rare, once observed it is quite unforgettable. However, many neurologists and GPs are still unaware of the condition. In most cases, the first symptoms are insidious and victims are often initially misdiagnosed with anxiety or depression.