I was interviewed by our local newspaper and, through that article, found two more sufferers locally.
I heard from a member of the group about a neurologist who practices in West Yorkshire. He has a greater knowledge and interest in SMS than my original neurologist. I am fortunate to now be under his care. He has started me on Baclofen. So perhaps I am one of the lucky ones as I have two very caring consultants looking after me. I also have a very supportive network of family, friends and neighbours.
I took the children to the seaside. I was fine driving there, but when I got out of the car the stiffness started. Eloise held my hand and, with the help of my walking stick, we got on to the promenade. By the time we got to the ice-cream shop I found it difficult to sit down because by then my back and left leg were in spasm. I told the kids to go and choose what they wanted, hoping that by the time they came back my body would have calmed down. Fortunately, it did, but I was still very stiff.
While walking back, I held onto the rail at the edge of the promenade. Unfortunately, I couldn’t let go — even when an elderly lady approached holding onto the same rail. Poor woman — she had to walk around me! So much for consideration for senior citizens (I hope she realised I had no choice…).
The children wanted to go on the beach, so when I found a seat, they helped me to sit down and off they went. After about half an hour I was getting cold and wanted to go, but I couldn’t attract the children’s attention, and certainly couldn’t get down the steps to the beach. I just wanted to cry. When they came back we managed (slowly) to get back to the car, and finally I began to relax in the comfort of my four-wheeled cocoon. Strange how being in the car is so reassuring — almost like shutting out the real world.
We arrived home and I told them they could watch TV. I began to prepare our evening meal and then the tears started to flow. And flow. We were in danger of drowning! The kids have never seen me cry (except when watching soppy films) so I told them it was the onions. Lame excuse, but the best I could manage through blotchy eyes and tear-stained cheeks. I must have looked a real sight.
When David came home I told him about the day and the tears started yet again. That evening I cried solidly for about two hours and went to bed absolutely shattered at about 8.30pm. I felt such a useless wife and mother and a burden to everyone. That was the first time — and will be the last — that I feel so sorry for myself. I hope…
The latest and most frightening episode happened a few days ago. I was getting in the shower as Eloise was getting out and I began to stiffen up. Christopher got in too. I managed to help him a little, but my back went into spasm and, with his help, I got onto my knees and waited for the spasm to ease. It was then I realised I couldn’t get up. I was completely rigid. I panicked and started to hyperventilate.
Eloise, who despite her youth, is as able to care and soothe as well as an adult, said: “Mum, breathe slowly, nothing will happen to you while I’m here”. Such maturity. She put her arm around me and gently massaged my back (at the same time ordering Christopher to pass a towel to keep me warm). I calmed down a bit and thought it might be a good idea to try and get one leg over the side of the bath — not a good idea as it sent me into spasm again. At this point I realised I needed reinforcements and Christopher telephoned Isobel, a long-standing friend who lives just around the corner. Like a one woman Seventh Cavalry, Isobel charged to the rescue and I was duly lifted out of the bath, dried and dressed.
Report in the Lancet: 50% of SMS sufferers are also type 1 diabetics. Interesting.
We all went on holiday to Spain. I was so sure I would have been able to do the things I did last year, but I had not really given a thought to the fact that SMS is a progressive illness, and it was a year since I had been abroad. I spent a lot of the time holding onto David, and on a couple of occasions found it very difficult to get down to breakfast. I wonder if we will ever be able to go abroad again.
Interviewed for a magazine called Best. I was very disappointed with the article. Apart from anything else, they did not include the support group telephone number. They did, however (to their credit), print my letter in the ‘You tell us‘ page in November, giving the details they had not printed in the original article. I received quite a number of calls from potential SMS sufferers.
Window cleaning day and it was very hot. I asked the guys if they would like a cold drink. When they had finished, they brought the glasses to the door and we chatted for a while. Then I felt my back starting to spasm a little. Here we go again. I was holding the glasses in the crook of my arm and grabbing the wall with the other hand, trying to appear 'normal'. After they had left, my back and left leg were so rigid I could not move. I tried to work out a plan of action but soon realised I couldn't. If I dropped the glasses I would have both hands free enabling me to grab hold of the door handle, get down on my knees and crawl to the living room. That would not have been a good idea as I was bare footed, so I would have either suffered a broken toe or would have been crawling on broken glass. So many choices! Anyway, this particular story had a happy ending as a neighbour chose that very moment to pop in and rescue me.
Interviewed by The Daily Mail. I told them I did not want to take part in a tacky article and stressed the link with Type 1 diabetes and the importance of printing the support group telephone number. They agreed. They also interviewed my neurologist. They even took some fantastic pictures that made me look young and beautiful — David must have been impressed because he got hold of some prints and had the best one framed. I was inundated with calls from SMS sufferers and potential sufferers after the article appeared. I even received calls from total strangers, ringing to wish me luck. Such is the power of the Press (David's a journalist and kept telling me so, but until then I didn't really believe it).
I now have 22 members in the group. Some are in a more advanced stage of the illness, but we all share a sense of humour which helps us cope with our relatively unknown illness (I could write reams about the amusing things my family and friends say and do to me, but that’s another story). There are many anecdotes and there have been times when it all seems so unfair but, as they say, "c'est la vie".
I had a call from the TV programme "This Morning" asking if I would appear on the show (they had read the article in The Daily Mail). Great news! More exposure! It was scheduled for Wednesday. But, to cut a long story short, they cancelled two weeks in a row because there were more pressing items which they wanted to cover — one of them being the whatever anniversary of Coronation Street. It was no contest and I had to admit the pulling power of Corrie was (marginally) greater than a little known disease with a funny peculiar name. They said they would get back in touch with me, but they never have. One day, perhaps.
Interviewed by The Sunday Post, a Scottish newspaper. They are not going to publish until the New Year because they want a time lapse because it's it been in The Daily Mail. Fingers crossed that it will appear and that I will again get a good response.
I was called by a London based radio station and asked if I would talk about SMS (do I need to be asked?). Naturally I said yes. Then the bombshell — they would call at 12.30 tomorrow and I would be live on-air! I had no idea what questions they would ask, and sat half the night writing notes. I spent the morning praying they wouldn’t ask me a question to which I would not know the answer. At 12.15, and panic looming, I hit the gin!
It must be a legacy from my days in local amateur dramatics because when the ‘phone rang, my nerves vanished. I had wondered how I could possibly talk on air for 10 minutes, but I did. Unfortunately, I didn’t receive any calls, but as I had never heard of the station, it’s reasonable to assume they don’t reach a very wide audience. Still, it’s all practice for me in my quest to raise awareness and to find other sufferers.
I saw Dr Walton for my usual diabetic check and I was feeling particularly low. December is a hectic time for anyone, but I was feeling so anxious (anxiety is a major part of SMS), and wasn’t sure if I could cope with organising Christopher’s birthday, the run up to Christmas and the New Year party, which everyone takes for granted we will host. I must say that physically I probably do less than everyone else involved (pretty good, eh?). Perhaps I should relax and say yes when someone offers to help, but my stubborn nature always seems to take over and I end up anxious and stiff. I suppose I should be happy, and I am, that people actually want to spend their time here with us rather than elsewhere. As usual, I am deviating from the point of this paragraph. Dr Walton is referring me to a medical consultant specialising in disabilities. I am not sure where this will lead.
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.
We always welome donations, no matter how large or small. You can donate on-line or via a donations form.
To donate by secure credit card transaction, please use the button below. The full value of your donation (less credit card fees) comes to the charity.
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.