We now have 56 members in the group. I had a call from NHS Direct. They wanted me to send information about SMS. I was a bit puzzled as I had already sent them everything I had. What I did not realise is that they do not operate from a central body. Apparently they are in the process of centralising their database so when I provide them with info in the future, it will be available throughout the country.
We have applied for charitable status in our own right. I am hoping like a person who has hope at the top of her list, that this will give us the credibility we deserve.
It’s funny where a simple conversation can lead. I was speaking to someone who used to work for a pharmaceutical company called Pfizer. He suggested I write and ask for a donation. To cut a long story short, I did, and they sent one. They also told me about the Neuropathy Trust. I wrote to them and they published an article in their magazine ‘Relay.’ No photograph this time — shame really, I quite like posing.
We have just had our living room papered by a so-called professional — I will say no more on that particular disaster, except I know I would have made a better job in the days when I could climb up steps, lean over to one side with a cloth in one pocket, a pair of scissors in another, brush in one hand and a strip of wallpaper in the other.
Anyway, I washed the curtains and spent heaven knows how long on the floor ironing them and the linings (12ft long patio doors). That bit was easy because when I am on the floor there is nowhere to fall. The fun started when I tried to hang them up. I had managed one curtain and had almost finished the second. I knew I was stiffening up, but thought “just this last bit and then I’ve finished.” However, my back realised this was a chance to give me some grief. Somehow it knew there was nobody about to come home, or visit, so it knew it could do what it does best. Oh good, it thought, she hasn’t got her ‘phone in her pocket as she usually does, so let’s get going, I was standing on the second rung of the stepladders and had my right hand on the curtain rail.
My back went into spasm, and there I was — stuck! I was only about a foot from the floor. I thought about just letting go and falling to the floor, but I knew if I did that my body would go into spasm. I thought about putting both hands on the rail in the hope my weight would bend the rail enough to enable my feet to touch the floor. However, knowing my luck it would probably have snapped, and I would have fallen into the conservatory and crushed my beloved tortoise, George. If only the conservatory door had been closed I could have reached the handle.
The ‘phone rang twice while I was perched like an enormous upside down parrot (minus the beak). Actually, I looked nothing like a parrot, more like a complete idiot, who should have known better! I managed to knock the ‘phone off its cradle with my foot. I felt sure I could have used my toes to ‘phone someone, but no, it fell to the floor. Fortunately, the spasms eased quite quickly, but somehow I could not let go of the rail. Anyway, I don’t know how long I was up there, but it was somewhere between reading the Sun and doing a 2000 piece jigsaw puzzle. The first thing I did when I got down was to pour myself a large vodka — and it tasted good and did me good.
Subscribed to a new enterprise called GP Surgeries’ Healthcare Guide. A half page entry. It is to be distributed to surgeries in Northern Ireland. Let’s hope the Ј200 it cost will bring us some new members. Apart from anything, the Irish are (in my opinion) an amusing lot. David went on a golfing holiday to Southern Ireland two or three years ago. He came back with some funny stories, eg driving down a road towards a junction there were road markings: The first one said “Slow”; a few yards further it said “Slower.” Another day the six of them decided to go for a pint. Having driven around in circles (there were no signposts) they found a pub. They tried the door, but it was locked. A moment later the landlord came to the door and informed them the pub didn’t open until six o’clock, and then said: “Come in and have a drink while you wait.” There are lots more tales to tell, but this is meant to be a diary about life with SMS — so if you want any more you will have to give me a call.
We have confirmation that we are now a registered charity. ‘Stiff Man Syndrome Support Group’. Registered Charity number: 1099206.
Another member, Melanie, had her story published in a magazine called Take a Break. Unfortunately, the support group details were not included.
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.