January 2005

January 1: Well, I did not have a hangover, so I can’t have drunk too much. Hang on though, two empty beds…where are the children? The mystery was solved about 11am when we got a call from my brother asking when we were coming to pick them up (oops! How do you forget the kids?). When we arrived, they were tucking into a very delicious looking brunch.

The rest of the month passed by without any major incidents. In fact, I had a really good night out with one of my brothers. We went to a club to see one of my favourite folk singers — Chris Smither. Naturally, things didn’t go smoothly, as I was navigating. You can guess the rest. At least we weren’t (too) late...

The three days of IVIg came and went much the same as before.

February 2005

Why do we have to have such miserable weather here? The wind, snow, dampness and cold… I know it makes most people feel a bit down, but when one has SMS it makes life even worse, as getting out is that much more difficult.

There was one particular Tuesday evening that presented a problem for me. Eloise goes to the youth club and Christopher to Scouts. Normally, David does the last two pick-ups. But he was in London that day. It was a cold and sleety night and I took Christopher to Scouts. When I got back home, someone had parked outside my gate (perfectly legal). However, it meant I would have that bit further to walk. That is when the anxiety started. I simply cannot understand why six yards further should make a difference, but it did. I became very stiff, but managed to get myself and my walker out of the car. That is when the problem really kicked in. I just could not walk, not even one step. I stood in the sleet, getting colder, stiffer and more anxious. Three times I got back into the car, hoping I could calm down and loosen up enough to make the journey up Everest (well, that is what it felt like to me). I soon realised I could not do it, and drove across the road and up a neighbour’s drive (leaving my walker on the pavement).

I pipped my horn, and Billy came to my rescue. I reversed my car back to my house and, would you believe it, the other car had gone. However, I was still in no fit state to walk and Billy had to help me out of the car and into the house. By this time I am not sure if I was shaking from the shock of it all or shivering because I felt so cold. I had to ring Billy again 15 minuets later to help me back to the car to go and get Eloise. It is strange how I can feel confident and relaxed enough to drive, but not to walk alone. Anyway, fortunately David was home in time to pick up Christopher at 9.30pm. This incident sounds so absolutely ridiculous, but the reality of it was quite the opposite.

I have had my last IVIg treatment, and although I would say I have not drunk as much vodka as I did pre IVIg, I don’t really feel it has done much for me. However, had I not tried it, I would never have known.

We had our committee meeting this month. We talked a lot about raising money and, of course, awareness.

March 2005

We have had a new bathroom fitted. The reason for mentioning this fact is because the builder is the first person I have come across who did not appear to acknowledge my condition. By now, readers of this diary will know I have good days and bad days, good hours and bad hours. A small example of what I mean: Walking upstairs with a cuppa for him was OK most of the time, but on the odd occasion when I was ‘stuck’, I would call to him and he would come and take the mug off me, but not ask if I needed any help to get back down! As I have said before, little things like that bring on the anxiety. It then takes time to settle down again. The up side of this “cuppa” incident was that he waited much longer before he got another one.

Changing the subject back to IVIg. I finished my course last month, and would not be due for the next one — had I being going to have it — until the end of the month, so why have I felt the need to start drinking vodka again? I seem to be becoming more reliant on it, but as I have said in the past, it does help to loosen me up. Just a note here to say a bottle lasts about two weeks, so I don’t think I am a full-blown alcoholic yet.

My blood sugars don’t help, as they are running high, which makes me stiffer. The question here is how much of SMS is in the head? Before a diagnosis was given, many others and I were told it was all in the head. But I now believe that in part (certainly the anxiety) there is some truth in it. Having said that, there are proven medical reasons for this happening. How we get round it is another thing. It is both embarrassing and annoying when the doorbell rings and I can’t get to answer it. Never mind, if it had been a friend, they would have just come in! So, I was probably saved the job of telling a double glazing salesman to go away.

There are quite a lot of group members around the East Yorkshire area so we decided to get together and have lunch. It was really nice to be able to meet people I normally only speak to on the ‘phone.

David, the kids and myself went to Sheffield to see Anastacia (one of my birthday presents). We left home early expecting to find somewhere to eat on the way. However, it was not to be, as every restaurant was full and we would have had to wait at least an hour to be served. So we ended up at the arena and had chicken and very salty chips. What a horrid birthday meal. Still, not to worry, the concert was pretty good. In parts, at least — why do some artists feel the need to turn their best-known songs into something completely different? A couple of times she ruined top tunes by giving them a jazzy sound.

April 2005

This month has seen the stiffness, spasms and anxiety getting worse. There have been so many incidents where I have got stuck. Silly things like not being able to pick up a plate from the kitchen table, walk to the dishwasher, which is simply
a turn around and a couple of steps. So to plan B: I get down on my knees (that way there is nowhere to fall) and do the job, which is why I wear out the knees on my jeans so quickly. Now this would not be a problem if I enjoyed clothes shopping — but I don’t. I wonder if after that last comment I will have a queue of men at the door wanting to swap their wives for me.

It was the big 50 for David this month. I managed to hide the fact that I was organising a dinner party for him. On the Thursday I did the food shopping with Eloise. I made leek and potato soup. On Friday I made a chocolate cake, profiteroles, and a rhubarb (from the garden) crumble and laid the table for nine. When the guests arrived I managed to stay calm (that’s a first). Admittedly, I did have some help serving the food, but I managed to cook nine fillet steaks to order and make a sauce, served with roast potatoes, peas, mushrooms, cherry tomatoes and onion rings. Why and how did I manage it when I have felt so bad earlier this month? It does not make sense! But this is the irony of SMS.

One of his presents was a day trip to Iceland (the country not the shop). We had to be at the airport by 6am. Because I had not got absolutely everything ready the night before, I was anxious and very stiff. In fact, David had to almost carry me to the car. By the time we arrived at the airport, I had calmed down. Then I realised I did not have any socks on underneath my short boots, so I went into a shop at the airport and asked if they sold pop socks — and why I needed them. Apparently, there was not a shop anywhere that sold said item. But, as ever, my luck was in, as the assistant was wearing a pair which she kindly gave me (she assured me they were clean on that morning). People can be kind. Haven’t I written that somewhere before?

We had a super day. Among other things, we swam in the Blue Lagoon, which is a volcanic pool. The only downside was because of the minerals in the water, my lack of foresight in not taking any shampoo with me and the gusty winds meant that every time the coach stopped to let us off (and there were lots of stops) I would get back on looking as if I had been plugged into an electric socket! Did you know Iceland is one of the most expensive places in which to live? Hence Eloise got a small Celtic necklace, and Christopher got a collection of Icelandic volcanic rocks. Free, of course, as I just picked them up as we walked around. Christopher’s gifts were not as useless as you may think, as one of his hobbies is collecting rocks, minerals and fossils.

Later on in the month I thought I needed some sun, so I visited my sister and spent a week in Brighton. It was a mixed week SMS-wise, some days were good and some days I had to use my walker indoors.

May 2005

I have been fighting a losing battle with my lower back, particularly first thing in the morning. The spasms and stiffness are at times breathtaking. I can usually manage to come down the stairs, but sitting for a cuppa is when it usually begins. I sit at the table, but my back wants to play around with its friend ‘stiffness’, so I cross my legs. That does not work so I sit forwards; no joy. I put my feet up on another chair, but my back does not like that either. In fact, my back does not even like me to pick up a cup of tea. But it lets me, just so it can laugh when I spill it. After about an hour of constant spasms and stiffness I fight back. When I get up and take a few steps my back knows I mean business! It will usually give in when I mobilise myself. However, it will try again later in the morning. This time I hit it with vodka! This is my weapon of mass destruction. After about 10 minutes I am mobile, and relatively comfortable again — for a short while. Because of this, I decided to see my neurologist. He told me to change my medication around, try different amounts, more of one, less of another, to see if it would help. Of course, this takes time, but I will give it a go.

David and I have been to two concerts this month, Neil Diamond, and the newly formed Queen fronted by Paul Rogers. Queen were fantastic. The performance was being recorded, so when the DVD comes out you may see moi on it (I’m the one in a wheelchair, wearing a red top).

June 2005

I have been trying to alter my medication, but nothing seems to work. To add insult to injury my blood sugars have been high. As I have said before, when my blood sugar is high — above 12 — I get stiffer. So at the moment it is heads I loose, tails I can’t win. I saw my diabetic consultant and he adjusted my insulin, so fingers crossed.

We are having some building work done on the house. We are unsure what to call it because we wanted to make a disabled-friendly entrance. We asked the architect for a porch that would be able to house my wheelchair and walker. When we got the plans back, he had called it a garden room. David refers to it as the lean to! Anyway, it will all be on the same level as the garden and hallway. So, if any of you want to come and visit, you can. Just side-stepping for a moment: Have you noticed how much extra sugar you need as all tradesmen seem to have copious amounts in their tea or coffee?

October 2005

Well the summer has been and gone, and so have the builders. I bet you are all thinking, “Great, they can all relax now because it’s all finished.” Wrong! They have left both the garage and the garden room unfinished; however, the garden room is ready to decorate. Mmmm, I thought, I can emulsion that. Wrong again. I managed the ceiling with the help of an extension pole. I used a pad to do the walls. Remember I am now only 4’10” thanks to the hyperlordosis  (to those who use the metric system — sorry, but you will have to convert it yourself). Anyway, I was being sensible. I had a small pair of steps to stand on which had the paint tray on the top, and a big pair of steps for me to hold on to. I also had the ‘phone with me. Armed with a medium-ish sized vodka I was making great progress. Slow, but I was getting there. That is until I moved the small steps. I stood on the second step, put the pad in the paint tray and reached upwards. My body realised I did not have the big steps or the ‘phone next to me before my brain did. This is where the nightmare started. My back and both legs went into spasm. Please God, not again. Time went by and from time to time the spasms would ease off. I could turn my head to the left but not the right. I was holding onto the steps for dear life.

The plan was that as I could see through my study window I would be able to see if anyone walked past. About half an hour later I saw a paperboy walking past on the other side of the road. I shouted for help as loudly as I could, but he didn’t hear me. My dog did though, and came running and barking. He was obviously distressed. If only he was ‘Lassie’, he would have found a way to rescue me. Sorry Ollie, but running up and down the garden barking your head off doesn’t help. Nor does barking at me.

I was so hot and sweaty I could feel my hands sliding down the aluminium steps. There was nothing I could do about it. I had to rest my chin on the top of the steps or I would have fallen off. If that had happened I would have suffered numerous broken bones, due to the fact that I would have been totally rigid. About an hour later I was able to move my right leg down to the floor. All I could do was lie on the floor. I was exhausted. I eventually managed to crawl into the kitchen and had been there about five minutes when David walked in. He took one look at my face, which was bright red. I was dripping wet and could hardly speak. David’s response was “Are you having a hypo”? !!!!!!!!!!!!! – Why hadn’t he come home half an hour earlier?

I had an article featured in Real magazine. They took such a professional view of the subject and did not make it into a tacky freakshow. I would say it was by far the best magazine article written to date.

We all went to Majorca in the half term holiday. I decided to go exploring alone — well, not really as I did have my wheelchair for company. The terrace and gardens around the hotel grounds were a bit of a maze. It was disabled friendly, but I seemed to be going around in circles and finding myself in a place I had already walked through. However, I finally reached the beach. The only problem was the very steep (but only about three feet long) slope to the beach. Having got this far I was not going to give up at the last hurdle, so I let my wheelchair run down the ramp, and swivelled round a pole and down to my wheelchair (not as erotic as it may sound).

The first thing I saw was a small island about half a mile off shore. I sat in the wheelchair and had a ‘Shirley Valentine’ moment. Gazing at the island, I said “Hello Rock.” However, as Tom Conte did not arrive with a glass of wine, I gave up and made my way back to the slope. Fortunately, help was on hand and both my wheelchair and me were helped up. I tried to remember the disabled friendly path back, but as usual my sense of direction let me down. At least I knew I could not get too lost as I was in the hotel grounds. Believe it or not, even after a week I still kept getting lost.

The night before we left we ate in a bar which had a karaoke. OK, it’s a bit of a no no if you are ever going to see the audience again, but I wasn’t. So up I got and sang Bob Dylan’s ‘Just Like a Woman’. After the thunderous applause finally died down, David and I made a hasty exit, but not before a tearful woman thanked me for singing her favourite song (alcohol is very inexpensive there, and she was swaying a bit!).  

The only problem during the holiday was when a jellyfish stung Christopher. Apparently, a few minutes later, another boy was stung quite badly. I witnessed a mass exodus from the sea, but didn’t know why. Had my island turned nasty? Do tsunamis happen in the Med? Anyway, I had my video camera with me ready to film the event. An event which had been and gone — the boy who had been stung earlier. So I switched off the camera and got back to my book.

November 2005

November has been an extremely stressful month for all of us. I don’t want to go in to details, but the upshot is that Eloise, at the age of 16, has left home.

December 2005

It has been the usual, stressful, December. Shopping — why can’t we go back to the days when buying presents for the sake of them is not the priority? On the subject of presents, why are we told what one’s children, nieces and nephews etc want? Surely it is the giving that matters? Anyway, moan of the month is over now.

Christopher’s birthday was a bit of a laugh. A group of us went to the cinema to see King Kong. I always fall asleep — perhaps the chairs are too comfy. Unbeknown to me, everyone had taken a 50p bet on how long it would take before I fell asleep. Christopher won. He said one hour. I lasted 50 minutes.

We ate out on Christmas day. I would recommend it to everyone. No shopping, cooking or washing up — fab! But I did wonder what Eloise was doing.

It was our silver wedding on December 30. David and I had arranged to spend the weekend at a four-star spa hotel. How could I have even thought it would have been straight forwards? To begin with, a journey, which should have taken 45 minutes, took over two hours, due to a sudden snowstorm. Fortunately, we were towards the back of the traffic jam and were able to turn round (unlike many vehicles which had become stuck in the drifts). We drove back to Beverley, through to Hull, on to the M62, the A1, all the back roads and arrived at the hotel nearly two and a half hours after setting off. I was booked in for a spray tanning session, only to be told it may not be such a good idea as one has to ‘cook’ for at least four hours. I didn’t want to sit in the room and waste the day, so I opted for a full body massage. I guess most of you would relish the idea, but for me it was purgatory. I could not relax. In fact, I sat on a chair and bent over the bed for the back massage. I actually felt more tense when I came out than when I went in! David had a reflexology session which he enjoyed.

We spent the rest of the day exploring the hotel and enjoying our room with its four poster bed and a view over the golf course. I even managed a swim  — actually, it was more of a bit of flapping about. The only time I managed to swim, I went round in circles, resembling one of those frogs one buys for the kids to play with in the bath. The reason for this amusing sight is because my left side is weaker than my right and no matter how hard I might try, I swim crab-like. 

We went down for dinner at 8.30pm — you know what’s coming, don’t you? Yes, another disappointment! I ordered salmon, David ordered steak — medium to well done. Both meals arrived. I thought they were starters. Silly me, it was nouvelle cuisine. I have a theory that such meals were invented by an anorexic French chef who, in my opinion, should be made to live on such a meagre diet for the rest of his/her life. David’s medium to well done steak was served blue (just how I like it), accompanied by six chips arranged so the two of us could have used the vegetables to play noughts and crosses. David complained about his steak, which was taken away (leaving me eating). The next one arrived, and by no stretch of the imagination could a piece of gristle be disguised as a steak, so back it went. By this time I had finished eating. Along came steak number three. This time it was neither blue nor gristle, but an inedible burnt offering. By now David’s appetite had disappeared and been replaced by utter frustration. Let me say now that if you want a perfect steak, fly to Orlando and try Charlies. I’m drooling at the thought of cutting through one of their blue fillet steaks even as I write…mmm.

OK, back to reality. The rest of the evening was fine, and so to bed. The morning arrived and I felt achy and stiff. Were the pillows uncomfortable or is it because the SMS is spreading into my neck? I suspect the latter. Breakfast was yummy — a bowl of porridge, bacon, egg, tomatoes and mushrooms. I spent the morning reading the paper and drinking coffee. David had a full body massage, which he enjoyed far more than I had the previous day, although I do think the girl carrying out the act made the experience even more enjoyable (yes! David). Our drive home took 45 minutes because, overnight, the snow had done a disappearing act. No wonder us Brits are noted for talking about the weather. 

We normally party on New Year’s Eve, but it seemed nobody had the energy to organise anything this year. I should have known better. We had a call from my brother Martin and his wife Sue, inviting us over for a meal. They can always be counted on to make things better. Sue, an excellent host, cooked for eight of us.

Although — as always — I enjoyed being with them, I was stiff all evening. As midnight approached, we began to make our way to the fountain in the avenue where the fun usually begins. I had barely got out of their house when I realised I could not make it, and had to be driven the whole 300 yards! Once there, bottle in pocket, poppers in hand, awaiting the midnight bells, I found I could not let go of my walker, or David’s arm. So, while everyone else made merry, I was glued to the spot, unable to pull the poppers or drink from the bottle in my pocket.

There was one good bit though. Three well oiled young guys climbed to the top of the fountain and somersaulted off the top. I wonder how they felt later as they all landed in bushes as opposed to water. Anyway, I was driven back to my brother’s house, and David helped me out of the car. We were half way across the road when I felt as though I had been winded. I could not breathe. Although it did not last long, I was very scared. Thank heavens David was there. He managed to get me into the house and I had a rather large glass of alcohol. I had not drunk very much all evening. Perhaps I should have done! We went home as soon as the alcohol had calmed me down enough to allow me to get to the car. Bad end to a not very good year and I know I’m getting worse. Much worse.

 

 

Stiff Person Syndrome.

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.