I wrote to Balance (a bi-monthly magazine for sufferers of diabetes) to encourage them to write an article for their magazine. They seemed a bit perplexed and said they had never heard of it. But at least they didn't say no.
I am now only able to get to my car with the help of a three-wheeled walker (I asked if it was available in British Racing Green, thinking I would be able to go faster, but it wasn’t, and I can’t). My symptoms seem to be snowballing, but not everyone with SMS is the same. Some people have had it for years and are not as bad as me, and the opposite also applies.
I had a call from Pam (Professor Leslie's research nurse). The British Neurological Surveillance Unit is contacting all neurologists to ask for details of any SMS patients they have. It would seem the research programme is moving forward again.
Stephanie, a group member, was interviewed for Chat magazine. She was not happy with the result. Quite a lot of what was printed, she claims, she did not say, and to top it off they put in her telephone number instead of mine. So all of the calls she received had to be redirected.
I saw my neurologist and he suggested I alter my medication as the stiffness was affecting me more than the spasms. I have increased the Baclofen and slightly decreased the diazepam. Too much of either makes me drowsy.
Two weeks later I was seen by a consultant for people with physical disabilities at a local hospital. This was a referral made by Dr Walton, whom I had seen in December when I was feeling very low and the stiffness was particularly bad. I was seen and examined by his registrar and, as is always the case, I had to explain what SMS is. He was a pleasant young man and appeared very interested. He spoke to my consultant, who then came in to see me. He prescribed Tizanadine (a second line treatment). I have not, as yet, had the prescription filled. I have a gut feeling that on top of diazepam and Baclofen I am going to end up like a zombie from one of those awful but laughable Hollywood B-movies. Others might find it amusing, but not this time. I have written to my neurologist for his opinion. He has advised me to try it. The only drawback is that I have to have liver function tests done every four weeks. Still, if it helps, I don’t mind.
I have written begging letters to Richard Branson, Chris Tarrant and Chris Evans for help to run the group. I received very nice replies from both Richard Branson and Chris Tarrant, but sadly the answer was no. Chris Evans was probably too busy with Geri…
I have been taking Tizanadine for four weeks now. I am taking 2mg qid, and will have my first liver function test later this week. The test result turned out OK, thank the lord.
I wrote to Dr Peter Brown at the National Neurological Hospital in London asking if he would put together an "idiot's" guide to SMS for new members — something that would be easy to understand. He duly sent an information sheet that has been very useful as it is to the point and, as requested, easy to read.
Have had a few scary incidents all involving spasms and stiffness. Trying to leave the supermarket, I had to be taken to my car, this time in a wheelchair. I had been fine while shopping, but as soon as I got outside I just could not walk. The trolley man has helped me in the past. With the help of Christopher, his friend, the trolley man and a wheelchair I got back to the car. I was too frightened to feel embarrassed or to even be aware of anyone seeing me in such an undignified state.
The following week the children and I went to a local garden centre. I managed to get to the door but could not walk around inside. I told one of the staff what I wanted and after he got a seat for me, he went to get my order. I managed to walk outside, but could not get as far as the car. I asked a passer-by if I could 'borrow' his arm to get to the car. He obliged and told me he was an ambulance driver. It still surprises me how kind and helpful strangers can be.
Sunday Post (June 3rd) have published the interview I did last year. I have had quite a lot of calls. Two of them have already been diagnosed with SMS.
Last night I was very stiff, and having got into the bath, my back decided to go into spasm yet again. It didn't last long, but left me feeling stiffer and more anxious. I could not lie down and had to sit like a small child while David washed my hair and helped me out of the bath. I managed to dry myself in between the children coming in and out, asking questions. Christopher: "Mum, can Adam sleep here tonight?" Eloise (aged 11): "Mum, do you think I should start shaving my legs?"
As I was sitting on the bathroom floor (not exactly 'fur coat and no knickers', but certainly pyjama top and no bottoms) trying to relax enough to get up, Christopher jumped into the bath, and I was wet again. Eloise preened herself in front of the mirror while doing her impersonation of Britney Spears. It is at times like this that I realise how accepting and resilient children are. They knew I was having problems, but also knew if I needed help I would ask. Otherwise, they just get on with what they are doing.
I could hear David talking to my brother and sister-in-law and then footsteps coming upstairs. My brother walked in and I shrieked "Get out”. I don't know who was most shocked — him or me. It was becoming more like a Brian Rix farce by the minute. I called to Sue, my sister-in-law. She came up and helped me put on my pyjama bottoms, went back downstairs and returned with two glasses of wine (both for me). By the time the children had finished in the bathroom and Sue and I had emptied our glasses (so they weren't both for me after all), all I could do was laugh at the events of the last 45 minutes. It had gone from the ridiculous to the sublime!
There have been many upsetting incidents and many funny ones. For instance, when one sees a 40-something woman walking across the road with an 80-something man, one assumes it is the former helping the latter! It is at times like that when I have a quiet giggle to myself.
School holidays. We didn't go abroad as I knew I would not be able to walk any distance, so we had the old fashioned 'days out'. Unfortunately, every day ended up with me needing help. Fortunately the kids accept this as the norm, but although David is helpful and understanding, he must feel as frustrated as I do, as I can be relatively OK one minute and in spasm the next. Therefore, there is anxiety on both sides. Not surprisingly, I suppose, it’s getting harder for any of us to keep seeing the funny side these days.
I have been in touch with Diabetes UK. I sent them a copy of Dr Brown's information sheet. They told me SMS information is now available on their help line, although I haven't checked it out as yet. I have also been in touch with Balance again. I was told they prepare months in advance, therefore it may be some time before they can do anything.
Saw my consultant for people with physical disabilities. I am now taking 2mg of Tizanadine qid. Still a relatively small dose, but I am feeling stiffer than when I began taking them. He advised me to decrease the dosage with a view to stopping altogether, which I am doing. He is also referring me for a wheelchair.
I am now free of Tizanadine, but as it is the Christmas period, I don't imagine I will be able to assess how it will affect me for a while yet. Christmas was better than I expected this year. Perhaps it was because I began the preparations and got things organised well in advance. It made it much easier catering for the masses, as most things just needed to be taken out of the freezer.
Ken, a group member, has had his story published in his local paper. The headline read ‘The summer before this happened I climbed Snowden. Now when I go out I have a wheelchair’.
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.