I walked to the local supermarket with the children. Good grief — are they really eight and 10 years old now? On the way back I fell. Despite wearing thick clothing, I still managed to bruise my ribs, arm and hand. Fortunately, a Good Samaritan helped me up, but I was too shaken to walk. I seemed to be surrounded by people within a matter of moments. Two paper- boys took the children home and a lady took me home in her car. People can be kind and considerate after all.
David has bought me a tricycle — Ј700! But it exercises my muscles. I am quite fearful of walking alone as I am afraid of falling. There don’t seem to be any warning signals when a fall is imminent and there is absolutely nothing I can do to prevent it. My whole body goes rigid, and down I go. I suppose that is why it is called Stiff Man Syndrome.
I am deviating now, but when Moersch and Woltmann discovered this condition in the 1950s and named it Stiff Man Syndrome, why do the politically correct core keep referring to it as Stiff Person Syndrome? Working on that premise, perhaps smallpox should be renamed vertically challenged pox, or chickenpox called fowlpox? German measles should be Euro measles. The list is endless. Political correctness, pointless form filling and endless red tape are anathema to me. Now I have that of my chest, I can continue my diary…
Everyone who knows me, knows about my passion for music. My friend Vanessa and I went to a local folk club to see Benny Gallagher. It was Vanessa's comment after the show that really shook me. She said she had seen the 'old Liz' that night. The Liz I used to be. It made me realise how 'down' I had been since getting my diagnosis. Yes, I still went out, I still talked 50 to the dozen, I still told my usual stupid jokes with the punchlines somewhere in the middle, but I knew what she meant. I think I fell in love that night. I fell in love with the atmosphere, the music and with the feeling of being me again. For a time, at least.
I took the kids to Spain for a week (David was on his annual golf holiday/escape from Colditz). We stayed with Peter and Joyce (my stepmother) who have a house there. I don't know if it was the heat or the Med, but I managed to walk further than I might ever have expected — the fact that one has to keep up with "left right, left right" Peter may have had something to do with it. Anyway, I swam and even managed to dive into their swimming pool, and I have the photos to prove it. We went to midnight firework displays, aqua-parks and festivals. It all seemed so completely normal. There weren't even any ill effects from the daily exertions, apart from a few aches and pains. Remission is wonderful — winning the lottery can't be better (though it would be nice to compare…).
My next quest was to register my name with the Council for Voluntary Services, a charitable organisation operating in the UK (different regions in Britain have similar organisations, and are known by a different name, but are the same kind of set-up). They have a list of charities, help/support groups and other organisations. Basically, what happens is if you have an illness or are the victim of any kind, the chances are that the CVS will be able to give out a contact name and telephone number?
David has bought many things to aid my mobility, the most expensive item being a tricycle, which was very useful — until I went into spasm while riding it. I was too fearful of a repeat occurrence, so bye bye bike. Never mind, it was very heavy — especially when Christopher was sitting on the back, the lazy lump.
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.