January 2012

Happy New Year one and all! How strange it is that last month was so busy, but this one is so quiet. Apart from breast screening and an appointment with my diabetic consultant, not much else has happened. Oh yes it has, I have stopped smoking! Well kind of. I am using a battery operated thing. OK, it uses nicotine, but does not have any of the additives.

Keep a note of the following: We are having a new kitchen – don’t know why as I don’t like cooking. Perhaps I just wanted a new kitchen! So the guys came, and we talked about we wanted. We? David can only cook a grill-up, but when he does it’s much better than mine as he doesn’t burn everything. I always thought that when the smoke alarm in the hall goes off, it’s the equivalent of a dinner gong…

February 2012
The date for the kitchen is set and I can’t wait for the fitters to begin, so I (prematurely) dismantle it and put it in the garden. Mistake? Mmm, difficult to say as we ate a number of meals at my brother Martin’s, cooked by his wife Sue – yum, yum! Away from the kitchen saga,

I have worked at Hull Uni quite a lot this month. I always come away wishing I was young again. What would I have done? To be truthful, I would still have been a nurse. However, I still – like all of us, wish I was young again. As the fabulous Oscar Wilde said “Youth is wasted on the young”. Anyway, I digress. David and I went to a niece Emma’s 30th birthday party in Buckinghamshire. Fab night, food to die for, and I even had a ‘dance’ with a total stranger! Thank heavens we stopped before the DJ played one of the songs from ‘Dirty Dancing’ lol. February has been a busy month! Usual regular hypos, so what’s new?

March 2012
I’m still working at Hull Uni and David still works on an-hoc basis at the golf shop. David has set up a golf competition for the Charity. For details, please look on our web site. So, now I am 60. Yippee – can’t believe I am still on this earth. Going back, Peter Cook and Dudley Moore wrote “30 is a dangerous age”. Someone said 40 is the new 30. No it’s not. 50 – no big deal. 60, you become a pensioner. I think that means you are old.

The weekend before my birthday, my brother Martin and his wife Sue took me to London. We stayed with my niece, Dawn (Martin and Sue’s daughter). Over the weekend we went to the Ideal Home Exhibition at Earls Court, and to see The Mousetrap at St Martin’s Theatre. I had wanted to see it as it began the year I was born, and it was as good as I had hoped it would be. Divvy Liz didn’t take any cash, but as it was my 60th, the girl in the box office very kindly didn’t charge me for a programme. After the performance we waited at the stage door and I managed to get the programme signed by all the cast. Getting back to my niece was eventful as it was St Patrick’s Day. Every Irish person we saw was peed as a newt. Why not celebrate? It brought it home yet again that I was not able to join in – can’t dance in a wheelchair.

David’s golf competition to raise awareness and hopefully drag some funds into the charity is soon to start. Photos and interviews followed to publicise the event.

Anyway, for the moment the charity took a back seat. After a few beauty sessions(!) I packed my bags for a super holiday in Rome. David had booked a fabulous hotel and we had the most wonderful time. I have been to Rome before, but with David it was so special. We saw all the sights, the Colosseum, Vatican etc, and so much more. There were times when I could not walk so David got me some vodka, and hey bloody presto I could walk! I did a video for our Facebook page in front of the Trevie Fountain. There was only one day I could not function. You know what though, I could write about those days in Rome forever, describing every detail – but I won’t because it’s mine to remember.

April 2012
I went to Beverley Minster to see the passion play. My step-mum played Mary. Super – she even cried to order (she really should join the local theatre group). As the play went through the town quite slowly, I was able to keep up in my chair.

I have done my last ever car-boot sale. Everything we don’t use went, although I could not get rid of anything memorable! What didn’t sell I decided to take to a charity shop. Can someone tell me why I had to choose the day when hundreds of people where doing the Beverley run? The posts attached with ‘crime scene tape’ were not going to stop moi! So I waited for a gap and, as one appeared, I put my head down and managed to wheel across to the charity shop.  It didn’t help when I was asked to take it to the back entrance (I may have said it before, but my sense of direction is non-existent). A member of staff somehow managed to squeeze in the car and showed me the way. I felt quite sorry for him lifting boxes out of the car. To be honest I felt a bit sorry for me as I could not help. Today was not good! People running around everywhere while I have to sit and watch someone unload my car.

I was doing some work in Chris’s room and had a severe hypo. The only good thing to come out of this is that David finished the cooking! Nothing else to report apart from the usual hypos and the usual anxiety, spasms and rigidity!

May 2012
We had our committee meeting. One of the members stayed over. Sadly it takes him a few days to recover from the journey.

Chris was coming home from uni in Warwick – why does nothing go smoothly? We got a call from him at 11.45pm to tell us his motorbike had broken down somewhere near Newark about 75 miles away. Because it was so late, David organised someone to pick up and store his bike and book him into a Premier Inn for the night (another small fortune down the drain). David drove down the next day with a borrowed trailer to collect Chris and his broken down bike. Turned out the engine had seized and needed an engine rebuild. Ouch.

I went to visit Claire for a few days. For the first time, I suffered a bit on the journey. I needed help on and off the trains. Nonetheless, when I got there, we had our usual fun.

June 2012
Well, what a strange month. Nothing to report. Very odd. Not even a hospital appointment.

July 2012
I don’t know if I have mentioned it, but I have cataracts in both eyes. The left one is the worst, and so I went for a pre-op assessment. I have to admit the thought of having it done is a bit scary. When I was at school I always wanted to wear glasses (for the life of me I have no idea why, perhaps that was an indication of the strange/crazy person I am). Now I do wear them, I can never find them. I have to tell anyone who reads this I will not have them on a necklace until I’m at least 90.

I have seen my diabetic consultant, and he seems quite happy (not about my disappearing glasses, obviously!).

I feel my anxiety and stiffness is getting worse. As a consequence, I often dip out of things at the last minute. My friend, Vanessa and I, were going to see ‘A Midsummer Night’s Dream’. I had to call her, not for the first time, that I just couldn’t make it.

August 2012
Last month’s entry was almost my last! David had gone to visit his brother, near London. Chris had gone partying. I took Ollie out, having checked my blood sugar first. I drove to an area called Beckside. We didn’t go very far as Ollie is almost 14, so he needs fairly short walks. As I propelled myself back toward the car, I felt strange. I could feel my head falling forwards and couldn’t understand why my wheelchair kept veering toward the beck. I remember someone asking if I needed  help…the next thing I remember was waking up in an ambulance with a glucose infusion in my arm.

They told me they were taking me to Hull Royal Infirmary. I refused. They told me again but this time they also said if I didn’t comply they would ring the police! My first thought was ‘I can’t get arrested and have a criminal record, I run a charity!’ (sorry to my nearest and dearest for the charity being my first thought).

When I arrived at HRI, I found my brother Martin and his wife Sue waiting for me. After being told I was to be admitted you can guess my reaction ‑ I was in my brother’s car within 15 minutes! But where was Ollie? Apparently, the woman who found me and raised the alarm took him home – where her husband recognised him! He’s a golfer and had seen Ollie in the Pro’s shop several times with David. What a small world.

A busy night followed. Shopping, taking flowers to the couple who looked after Ollie and picking him up, and home to get meds (as Martin and Sue ordered me to stay overnight with them). We had a takeaway about 9.30pm. Understandably, I didn’t sleep very well. In fact, I lay on the bed listening to my MP3 player for hours. Sue drove me to pick up my car about 7.30 the next morning. I needed quite a bit of help as I was as stiff as a board. Having got home I breathed a sigh of relief. If it hadn’t been for the couple who rescued me (and Ollie) I may never have been ‘home’ again. I have to say a few tears were shed that day.
I had my cataract operation. The staff were fantastic. I had felt very apprehensive, but when I went into the theatre they gave me a sedative to help with the startle response. I had a cover my face and an oxygen tube underneath it. They told me not to talk, and believe it or not I didn’t, well not for about five minutes. It was then I asked when they would be starting. The reply was “We will be about 30 seconds and then we will have finished”. I am relating this to anyone having this op just to say I felt absolutely nothing. Although the eye patch was not very attractive!

I have been to stay with Claire – again. I’m sure she will start demanding rent soon, although as I usually pay for our regular trips to Ditchling for scones and coffee, she may let me off.

My friend Vanessa dropped me off at a shopping outlet while she visited her mum who is in a nursing home. I bought a cardigan without trying it on. It’s difficult when you feel stiff and are in a wheelchair. I also bought a few other things which I didn’t tell David about. When I arrived home I tried the on the cardigan. Oh no, it’s too small. David didn’t like it anyway. Not to worry, it can go back the next time, and I will see if they have a bigger one. What a busy month.

September 2012
We lost Ollie this month. If there is anything reassuring, it’s knowing he had a happy life with us. What a star! The best (friend) dog ever.

October 2012
A short visit to see Claire. The problem was the travelling. I went by train as usual, but I was so rigid and my back was in spasm for most of the journey. I needed help to get off the trains. I really believed I would be OK going home, but it was even worse. Claire took me to the station and I managed to get on the train to Victoria, but I needed help to get off. It’s only a matter of crossing the road to get to the bus, but I had to ask for help. Once on the bus I thought I would stand, as I wondered if sitting on the train for over an hour was the problem, despite having done it so many times before! It’s strange/weird the way the brain works. Part way through the bus journey I had to sit down.

When I arrived at King’s Cross three people had to lend a hand to get me off, one of whom was a woman about 10 years my senior. I held her arm so tightly I’m sure she would find a bruise later (she doesn’t know my address, so she can’t sue me – actually, I’m not sure if I even gave her a business card!).  

It was pouring down, but once we got under cover I took my travel bag off the wheelchair and sat down. Once I got to my platform I was shattered and roasting hot. Fortunately, two guards were on the train. They could see the state I was in and bit by bit they got me on the train – 1st class to boot. They also radio-ed ahead to my next change asking for assistance.

When I got there, there was a ramp waiting for me and a guard to escort me to my home train. David met me at the station and I was so tired and stiff I took double medication and it wasn’t long before I was in bed.

 I went for my eye check-up. Now my bad eye is my good eye and my old good eye is now my bad eye. The eye that is now my bad eye also has a cataract, but not quite bad enough to be operated on. Does that make any sense?. If not try The Times crossword!

Lots of other stuff, but nothing of importance except I have lost a small fortune this month. Two visits to the theatre and a trip to watch horse whispering, all paid for in advance, but too stiff to attend. A note to any former boyfriends, bet you’re glad we didn’t make it! I’m sure David would not really agree as he is the one who is stuck with me!

November 2012
Well, fortunately, I managed to see Beverley Theatre Company’s production of Habeas Corpus. My friend Vanessa picked me up. It was one of their best performances I have seen. I felt so happy that I didn’t have to drop out at the last minute.

Although I seem to be getting stiffer, it may be the weather, who knows? I wanted to go to the supermarket one morning. Not my cleverest idea as I was so stiff, but as usual my determination was in full swing. Having got out of the door, I had to sit in the wheelchair (there is a slope from the garden room to the ‘disabled friendly’ garden).

Just as I got to the gate, lo and behold, in came the postman. He got me to the car and even put the wheelchair on the back seat for me. Once I was sitting down, and after a few calming breaths, I drove to the supermarket. Unfortunately, I was still very stiff. I managed to get out of the car, but all I could do then was stand. I was looking for a member of staff to appear, but alas I couldn’t see anyone. So I waited until I saw a guy and asked if he could get my chair out, which he did. Obviously I told him I was waiting for a good looking man to help!

Shopping done, but I was still so stiff. The girl on the till told me she was going on her break and that she would help me back to the car. She put both my shopping and the wheelchair in the car. When I arrived home I was able to get the chair out. I sat in it along with the shopping. I used my mobile to ’phone David’. I asked him to open the door! He almost exploded when I told him what had happened. “I could have done the shopping. Why do you do these stupid things” etc etc. I think my reply was something like “It’s an adventure”.

We celebrated bonfire night at the golf club with Martin and Sue. Burgers and hot dogs, and afterwards the most wonderful fireworks display, provided by the Lions. So a happy night was had by all.

We had our usual meals out, but I don’t know if I have mentioned it before, but sitting on a dining chair for too long makes my back stiff and sometimes I suffer painful spasms. David suffers too. Five prolapsed discs is no fun for him. To add insult to injury, he has been told the pain clinic has closed due to NHS cut-backs. He is due an infusion early December and will not get it. What a wonderful Christmas it will be!!!

I was asked to do an interview for a student’s dissertation. He chose SPS as both his mum and aunt both suffer with this syndrome. He is based in Brighton. Although he offered to come to me, I said I would rather do it in Brighton. The reason for this decision was because I had to find out if I could do it! If it was like my last visit, then I would have felt this bloody syndrome was taking me further down the slippery slope. In fact I was OK.

Claire said we could use her house for the interview, a great help for Matthew, the student. He didn’t have to find a room at the university, and I didn’t have to travel (thanks Claire). My anxiety was about eight out of 10. I had to kneel in the bath to have a shower. No way could I stand. I needed Claire’s help to get up, out and dressed. She is a beauty therapist, and therefore did my make-up.

When Matthew arrived, I felt quite calm (must have used up my stress during the morning). I hope the video interview was OK. Time will tell! He has two other interviews to do, and when it’s finished we will be able to put it on our website.

I only stayed four days, but as per usual Claire had ‘work’ for me. That said and done, the rest of the time was fun. We sleep in the same bed, enjoy a cuppa tea and a chat before one of us falls asleep. During the night, apparently, I giggled a lot, bought a bed, chatted to the salesman and snored!

December 2012
My journey home was OK, thankfully. I suffered some anxiety but a (small) bottle of wine calmed me down. Despite the train changes and sips of the wine, I got back to Beverley in one piece. So, there we are, I can do it!.

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.

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.