May 2010

Well, this is the first time I have written anything in my diary this year. The workload entailed in running the charity is almost overwhelming. Anyway, life seems to be yet more of the old ‘same as, same as’.

My thyroxine meds have been doubled in the hope I will have a bit more energy. I now take 50mcg daily.

Apparently, I now have a cataract in my right eye to match the one in my left. Perhaps the NHS believe in bog offs (buy one get one free). Neither eye poses a problem at the moment, so life will carry on as usual. I/we have still been to parties, meals out etc, and brother-in-law Mike still comes over to play golf, although David’s back still prevents him from joining in, much to his major league frustration — all those years at work and never finding enough time to play golf, now he’s got all the time in the world...

I spent a week with Claire in March — always a tonic, as we find the silliest things to laugh at.

I don’t think I have mentioned Tanya before. She is an Aussie and fellow SMS-er. She saw my site about two years ago and it has gone from an occasional e-mail to ‘phone calls and then Skype. She talks as much as I do, so you can imagine how many hours we have logged up. The conversations are often along the lines of “When are you coming over?” “Well, when are you coming over?” Just to shut her up (only joking) I asked her if she would set up a support group Down Under, which she did, and has a very successful support group on Facebook.

She came over here in May, and it was a blast. She spent four days in London (very brave for someone who has never been out of Australia in her life). As she can walk unaided and use the Underground she was able do see much more than I can when in London.

Then she spent eight days with us and the list of things I had planned went straight out of the window — we were just so busy all the time. As the weather was quite good, we started our day in the garden with a coffee and toast spread with vegemite! I showed her the old town in Hull, but we didn’t see as much as I had wanted her to see, although we did go for lunch at the oldest pub in the UK — ‘Ye Old White Harte’ — built in the 8th century. The customers were so friendly that before we knew it we had to make quick a dash to see anything else.

We did get up to some antics but I think the details should be kept between Tanya and I. I think her favourite memory will be the day we went to Castle Howard (a stately home near Malton in North Yorkshire) and the endless laughter which not only had us in tears but in real pain!

I suppose her least favourite memory would be the two occasions when she had to call 999 for me, each time because I was suffering a hypo. I can’t believe it, as only once in my diabetic life has there been a need for that. Both David and Chris were away for the weekend, but Tanya wasn’t phased by it as she too is a former nurse. In fact, although I was unconscious for two hours, she managed to Facebook her family to tell them what was happening, keeping an eye on me at the same time — well, she is a woman, therefore she can multitask!

Of course my anxiety had to keep making unwanted appearances during the week. There wasn’t room for three in our get together week, but anxiety has selective hearing! Perhaps that’s why I used my wheelchair more than usual. Eight days together and, believe it or not, the only time we talked about SMS was when we discussed our medication. Tanya takes more diazepam than I do. Another difference is she takes an ‘appropriate’ amount depending on what she has planned for each given day. She thought I should be taking more.

June 2010

My neurologist has given me many different medications in the past, but nothing has made any real difference, so I decided to give Tanya’s suggestion a go and almost doubled the dose. Hey, come back Dr Tanya. I can do things more easily. Some days I can even walk unaided in the garden!

I spent yet another week with sister Claire. Her son, Willum, had been banging on about changing his name to Martin, no reason given. During the week Claire bought a tortoise, and the subject of a name came up. Despite the number of names suggested there was no obvious reason not to call it Martin. The only problem was that we all kept calling it George. Before you think we have all gone completely mad, the reason is that it’s the name of my tortoise (there you go, puzzle solved).

Chris entered his first show jumping competition. He spent two weeks walking and jumping the course — on the horse obviously, as he wouldn’t have got over the fences on his own! On the day of the competition, he groomed her until she shone. Sadly, someone took her out and she came back lame, so Chris had to ride a horse he didn’t know. Chris looked fab, unlike the horse which had an “I’m not doing this” look in its eyes. True to itself, it refused twice at the first jump and Chris was eliminated.

July 2010

We had a committee meeting and later a fundraising event at Beverley racecourse on the 2nd. We managed to raise £590. It was an evening meeting, so I don’t think we did too badly in two hours. We are trying to raise money for research. Hopefully this relatively small amount, together with the funds in the charity account will enable the process to begin.

The same weekend saw the annual open gardens in the part of Hull where my brother Martin lives. It was a hot day and the women alternated looking at gardens and eating alfresco at Martin’s. The guys just ate, drank and soaked up the sun.

My only complaint is that as I was pushing my wheelchair (meaning I can manage ok) the girls left me to it. Obviously it’s much quicker on foot, whereas I had to manoeuvre around plants, trees, garden features etc. I was the last one back, but nobody batted an eyelid. They knew I had my ’phone if I had needed help, and in a way it’s quite nice to be treated normally.

My brother Simon and his family have moved from London to a village about three miles from us and are loving the quiet life.

David was asked to do a couple of days consultancy work in London and took the opportunity to combine it with spending a few days with his brother Mike. I think he enjoyed using his brain again.

Chris was away working too, so I had a few days to myself. Happily there were no problems.

Mike came up for one of his long weekends. I decided I could not bear yet another marathon sportfest on the TV, so I booked a two day visit to Liverpool and Salford Quays. When I got to Liverpool’s Albert dock I had to sit in my wheelchair as my back was so stiff. The first thing to think about was where to go. The second was… how to get there. The ground was very lumpy and bumpy (my wheelchair doesn’t like that).

Then out of nowhere came a guy asking if I needed help. “If you can just get me on to the flat bit, I will be okay” I told him. When he asked where I was going, all I could say was “Where would you suggest?” To try and make this story a little shorter, I will just say that he (Terry was his name) became my personal guide for the day, up hill and down dale.

I walked when I could, and when I couldn’t, he pushed me. He took me to the Cavern, which is now just a pile of rubble and the new Cavern, a replica of the original, plus the art college where John Lennon studied, the magistrate’s court and the Hard Day’s Night hotel (that’s where I got my souvenir).

We also went to a beautiful church. Inside, in neon lights, it read ‘I felt you and I knew you loved me’. What beautiful words.

Terry is a keen photographer and has e-mailed me the ’photos he took that day. What a sweetheart.

I stayed overnight in an okay-ish hotel, and for both dinner and breakfast I was invited to sit with others who were on the coach trip. The next day we went to Salford Quays. I don’t want to offend anyone who lives there, but it’s a kind of poor man’s Canary Wharf.

Anyway, two people from the coach party pushed me to the Imperial War museum, where a little time was passed. We parted company and I sat outside the Café Rouge with a glass of wine and read my book — A time to Dance, by Melvyn Bragg. Absorbed in the story and oblivious of the time, my heart skipped a beat when I realised I had about five minutes to get back to the coach. Oh, oh, where is the coach? Whizzing as quickly as possible in the opposite direction to the one my brain told me to go — which is usually a good idea — and with the help of a random stranger, I got there in the nick of time.

On the 26th Chris started his work experience. He’s doing it where he’s studying, at Bishop Burton College, about three miles from home. The highlight for him was the European Pony Championships. I went most days as I enjoy the show jumping.

Well, it’s the end of the month and health-wise it has not been very good. David’s back problems have been quite severe, plus other added health problems, and I am having more hypos than I should. The SMS is playing up more, probably due to feeling stressed about David’s state of health.

August 2010

Apart from all the hospital appointments on the calendar, the only thing of note would be Chris and I going to Brighton to ‘tortoise sit’ for Claire, as she was going to Florida. We had a great time, but I would have preferred Florida.

Anyway, my free bus pass — including companion — came in very handy. We were up and about almost every day. One day I decided to take Chris to Hastings (1066 and all that). It was a hideously long journey on the bus.

As it happened, we didn’t actually get there as I wanted to stop at an adjacent resort to take ‘photos of some of work the infamous graffiti artist Banksy had done the night before. Claire is a fan of his ‘work’. By the time we had taken the ’photos and had encountered more than my usual share of weirdos, we decided to go back to Brighton. We opted for the train as I didn’t think my back would stand another long bus journey.

Another ill-fated journey was the day we went to Fulham, a suburb of London. Chris wanted to see the football team in cup action that night. We left Brighton at 10am in the pouring rain and got a train to London (still raining) a bus to Fulham (still raining). We eventually found the ground, which was in the middle of a housing estate bordering the Thames.

He collected his ticket and I asked if there was a coffee bar within the stadium where I could wait during the match. “Yes, but it’s closed”, came the unhelpful reply. As it was only about 3 o’clock and still raining, and it was an evening match, where were we to go?

Apparently if we walked alongside the Thames, we would find a bar. Chris pushed me the mile or so to the said bar, only to find there was no ramp, and we had to find a way to the other side to get in. By this time we were so cold and wet I could have cried. Having made one drink last as long as we possibly could, we found there was a pizza place just across the road. So off we went, and yummy it was too.

Not too long now before kick off, but where was I to go? Chris pushed me back to the high street, and left me outside a Starbucks. He had to run all the way back. The rain had not let up for a moment, but I couldn’t wait for a hot coffee and somewhere warm to sit, but no! The lights were on, but the door was locked, so I propelled myself — which is not easy when it’s wet — and eventually saw a bar across the road. I sat with a glass of red and read my book.

When I got the long awaited text from Chris, I couldn’t wait to meet him. Once outside the bar I saw the steep slope at both sides of the road. Despite the fact it was a crossing place I knew I would not be able to get up enough speed to get me onto the pavement at the other side. By this point my back was in spasm as I had sat for so long and I was becoming more anxious — oh, and by the way, it was still raining.

At this point my luck changed. Out of the blue, a woman asked if I needed any help. I asked if she would get me across the road. Not only did she do that, but she pushed me back to Starbucks, where Chris was standing, shivering.

She didn’t know which bus would get us back to Victoria station and neither did we. Without a moment’s hesitation she offered to drive us there. It was a short journey to her house, but a bit difficult to get my wheelchair in her car already-overloaded car, but between them, they managed it. If she ever reads this I would like to say a big thank you to her.

Unfortunately, we missed our train, but caught the next (last) one. It stopped at every station, but we eventually reached Brighton, caught a taxi and arrived in one piece at Claire’s at 2.30am, and it was still bloody well raining. It probably goes without saying that I was fit for nothing the following day. In fact I stayed in my pyjamas and watched TV.

During the time we were there, my SMS was not too bad — perhaps because I was rather generous with both diazepam and gabapentin!

September 2010

Only one fun time this month was when I went to see the Freedom Festival in Hull. (Home of William Wilberforce, abolition of slavery and all that). It was also a celebration of the end of the round the world clipper boat race.

There were so many people! I had to spend most of the time sitting in my wheelchair, for fear of falling. Despite the hustle and bustle it was a fab event, ending with a firework display, which Hull should be proud to have organised. 

I had an appointment with my diabetic consultant, which I had to cancel. I was quite relieved, as I have had so many hypos. I am just hoping when I next see him, my control will be a bit better. I am not putting any blame on David for the hypos, but his health is poor, and he is so down. I think the stress of it all is partly to blame as it adds to my poor diabetic control.

Most people think physical exercise is the only thing which affects control, but emotional stress is just as effective, if not more so, as one is conscious of the former. Looking back over the last few months, I remember how it would be almost like a light hearted competition as to which one of us was suffering the most. The joke has run out of steam now. Fortunately, Mike came up to watch the Ryder Cup, so that lifted David’s spirits a bit, especially as Europe beat in the USA in a thrilling climax (apparently).

Chris is back at college for his final year. Fingers crossed…

October 2010

David and I went to a local pub to see an R&B band. They were really good, but I can’t remember the last time I came home with my ears ringing (well worth it though).

I attended a meeting at Hull University, with a view to periodically sitting on a panel to interview social worker applicants. Sitting next to one of my PAs felt a bit strange. She already sits on a panel, and was attending this meeting as a matter of courtesy.

Chris and I went to one of my niece’s 18th birthday party. David was still suffering with his back, and so had to stay at home. I thoroughly enjoyed the evening. Unfortunately, Chris had not eaten all day and consequently, due to too much alcohol, had to be put to bed by his peers who were almost as drunk as him. Meanwhile, I enjoyed the party, and just kept popping in to check he was still alive!

We drove back along the North Sea coast road between Filey and Bridlington the following morning. The sun was shining, and I just had to stop to look around — truly beautiful.

Quite often on a Saturday I catch the local bus into Beverley town centre for the market. It stops wherever the driver sees someone put out their hand. One particular Saturday I caught it with a neighbour. Neither of us had much shopping to do, so we mooched around together.

We just missed the bus home, so decided to walk. All was fine until the following day. I could barely move. I face a problem here! Do I do something, and perhaps suffer the consequences the following day, or not do it in the first place? Those of you who know me will know my choice is the former.

As I said earlier in the year, one of my brothers, Simon, has moved oop north from London. We have started going to a local pub to sing karaoke on a Thursday night. I don’t go every week, as I am sometimes too tired, but when I do, we have lots of fun.

November 2010

Simon’s wife, Janet, loves live music, and the two of us went to a folk club to see Flossie. I have seen her two or three times in the past, but it was a first for Janet. Thankfully she enjoyed it as much as I did.

David and I met up for coffee with our estranged daughter, Eloise. She has just finished her BTech in retail at college. She is still very keen to be a clothes designer, but it’s a difficult time as jobs of any kind are hard to find, so all we can do is keep our fingers crossed for her.

I went to the theatre to see ‘Teachers’ with Joyce, my step mum, and a few friends, and then for a meal afterwards. I was fine until Joyce and I got to the theatre. As we entered I froze. I had taken my walker as there was very little walking to be done, and I was not alone. It felt like an hour had passed before Joyce realised I was not behind her. In truth it was about a minute. I was shaking and had to hold her arm to enable me to walk. I found a seat, took 10mg of diazepam and washed it down with a glass of wine.

Within a short time I was fine. But as usual, the reason for the anxiety was a mystery. The rest of the evening passed by uneventfully.

David and I have been out to eat a couple of times with family and friends. Good times.

Here’s a moment not to treasure when my mind and body refused to work in perfect harmony. David’s back was playing up — again — so I thought he would appreciate his meal in the living room. As I started to walk from the kitchen with his meal on a tray, the plate began to slide... Instead of trying to straighten the tray with my hands, my legs decided to do their own thing and keep up with the tray. A few moments later I had fallen onto a sofa, and the tray, condiments, knife and fork, and of course the meal flew up in the air. It’s debatable who discovered toast almost always falls jam side down, but whoever it was, was right. Only on this occasion it was shepherd’s pie. All I can say is a) thankfully I was not injured and b) the dog did a good job cleaning it up.

December 2010

I guess the most notable thing to have happened this month is my visit to Paris. I was invited to a conference representing SMS. Two organisations — Eurodis (Europe) and NORD (National Organisation for Rare Diseases) from the USA — have got together in an attempt to establish a global online patient community for rare diseases.

They have two organisations up and running at the moment, and it’s an exciting prospect. I would love to say that it was uneventful, but as you know my life is never that. The journey was fine, and I arrived at the hotel, but why did my room have to be the furthest one from the lift?

The first evening, a few of us met up for a meal, which was fun. There are so many rare conditions out there. If you have SMS, don’t think you are special! There are rare conditions out there, which seem to be worse than ours. It was an eye-opener.

The following day we all attended the conference. I felt a bit sad that I was the only representative for SMS. Some of the other conditions had four or five representatives. We broke for lunch, only for me to discover my insulin pen had died. I always take a couple of syringes if I go away, just in case. So someone offered to take me back to the hotel — well, they would have to as I have no sense of direction. I could have ended up at the Eiffel Tower!

Anyway, objective achieved and back to lunch, only to find the afternoon session had started. We were told we could take any surplus food away, as it would be thrown out, so I took the Camembert (big mistake).

Most people were going home that evening, but I had booked an extra night, as I didn’t think I could manage 16 hours’ travel and a full day conference in thirty-something hours. I returned to the hotel — obviously not on my own — and after my evening meal began to feel a bit stiff.

I spent the evening in my room — with the Camembert, and it’s overpowering smell. Despite it being December, I opened the window and the cheese sat outside.

As it happens, I barely slept that night as my back was jumping about, and of course I became quite anxious. Even extra diazepam didn’t help. I got up at 6am and could hardly walk. There was no way I could have got into the shower, so I again had extra diazepam and waited until it began to take effect. I managed to get hold of the shower head, and washed my hair (well, that’s the only bit people can see).

By the time I had got ready and my bag packed, it was nearly 9am — almost three hours! Although in the wheelchair, it took an age to get to the lift, and I was hurting. I managed to get into the breakfast room, but it proved an impossibility to balance a tray and get anything. I asked a member of staff if she would get me a cup of tea, and I had to hold it in both hands, as I was shaking so much. I felt people were looking at me, but even if they were, it would have been out of concern.

I asked for another drink to take to my room, and with only one hand to propel myself managed the marathon run, aka journey, from breakfast room to my room. I checked out at 10am and sat in the reception area.

I had intended to go to the Louvre, but at that time, all I wanted was to go home. Eurostar was not due to leave until 5.15pm, so what was I to do until then? Thinking hat on? Extra diazepam has not helped very much, so why not try an extra gabapentin — with a glass of red wine. Fab! It worked, and I was at the Louvre before lunchtime, and a jolly good time I had too.

The journey back to the UK was fine but then things stated to go wrong. I am going to keep this brief. At Kings Cross station I saw my 7.30pm train to Hull was cancelled, and I had to use a different train company. I got on the train, which was also delayed. I had a bit of a bust up with the guard, as I was in a first class carriage. I managed to talk him round. Then the train broke down. I arrived at the connecting station only to find the next train was at 7am the following morning.

However, they organised taxis for those of us who were left standing on the station, and I arrived home at 1.30am. Oh! I forgot about the Camembert. I had left it as well concealed as possible in my bag, which was on top of the wheelchair — and nowhere near me. I don’t suppose anyone knew I was the owner of either the ‘smell’ or the chair.

Apart from the cheese, the other thing I brought back was the ’flu. Having gone to bed Sunday, I didn’t get up until Tuesday. My blood sugars were consistently high, despite not eating. It was Saturday before I got dressed. Having a generous nature, I gave it to David just in time for Christmas. We had been invited to my brother Martin’s for Christmas dinner, but Chris and I had to leave David alone on the sofa. We were both still feeling very ropey a few days later on our 30th wedding anniversary, so we settled for a take away.

The only highlight on New Year’s Eve was when at midnight I thought it would be a good idea to light a firework — a left over rocket from a Bonfire Night some years before. I pushed it into a plant pot just outside the door and, in pitch darkness, I used a match to light it. After a lot of noise, there was a big bang and I fell over — I didn’t realise the rocket would stick in the soil! And that is how 2010 ended, not with a whimper but a bang.

 

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.