January 2016

Great start to the New Year! 2nd January and neither of us could sleep, so up we got. I peeled potatoes, cooked meat and made pastry for the meal later today. Finally, we both went to bed at 3.30am. I was up at 7.30am and spent the day feeling shattered. At least the dinner was good, lol.

We had friends over for a weekend – Jeff and Jenney. Jeff was with David the night we met and if it hadn’t been David’s turn to ask for a dance, I may have ended up with Jeff.  Moving on... we had a super time chatting and swapping life events. On Saturday evening the four of us, plus Martin and Sue, went out for dinner. I think between us we had one of everything on the menu. An unusual event happened on Sunday morning –  I cooked a full English breakfast. As I only eat in the evening, I just had coffee, but it did seem to go down well (it had to as Jenny has her own catering business and I didn't want to suffer by comparison).

Later in the month I went to Sheffield to support a fellow sufferer. I can’t go into detail, but it was a long day and fortunately her husband was able to take me back to the train station and David picked me up at 11.30pm back home in Beverley.

The question now is, is it my age or the SPS which makes me feel so weak? Running a support group and charity is such hard work. I spend my days on the laptop, ‘phone, Skype, letter writing, etc. It feels as if I don’t have a life of my own. I don’t want sympathy. This is my bed so I must lie in it. Even writing this makes me sad as, in my head, I can still do anything, but my body doesn’t always agree.

On to a happier note to end this month: We went to Lucca’s restaurant in Hull with Martin and Sue. I was able to hold Sue’s arm to get in safely. We had steak to die for (well, it did for us!). My only problem was I needed the loo and I remembered it was upstairs. Only as we finished our meal did I see one not far from our table on the ground floor. Relief at last!

February 20116

Nicky and I went to one of my old haunts to see a Beatles tribute gig. I know most of the guys there and asked if they had a playlist. They did, but nobody was playing my favourite ‘In my Life’. I asked if they would play it and one of the guys asked why not do it yourself? My reply was “I can’t sing!” Unknown to me someone downloaded the words, another one wrote it out and two guys had practiced it backstage. At the end of the evening it was announced that I would be singing!!! So standing up, holding on to a pole, leaning against a wall and microphone in hand, it happened. Nicky even videoed it! Others must be the judge of how I performed…

I’m not sure if it was the cold, late night or embarrassment, but when I got home I fell in the bedroom. Fortunately, my top half fell on the bed, but I did bruise both knees. Otherwise I was just shocked and shaken, and David had to help me downstairs.

“I never get a cold” (!) Everyone who has been in our house seems to have one bug or another, and yes, it was passed on to both of us. I was sure mine would last for weeks, as is usual for diabetics, but in fact it didn’t last too long and in fact David suffered more than me.

Good news! George, my tortoise has come out of hibernation. He just walked out of the office into the living room to say “Hi guys, I’m back”.

I had a morning when my blood sugar reading was high. Despite the pump telling me it was giving me insulin, it wasn’t. In the end I had to change the pod despite having changed it the day before. Not a good feeling which lasted most of the day. At the end of the month my sister had been up North and picked me up on her way back to Brighton. Nice.

March 2016

Well, here we are again at Claire’s home in Brighton. 1st March and I went by bus to visit an SPS sufferer, Julie in W Sussex. It seemed to take an age to get there, however it was lovely meeting not just another suffer, but one who had never met another sufferer before. We had lunch and a chat. I decided to get the train back, which was much faster! I had only gone by bus as I have a free pass. We are now friends on FB.

That evening I was unhappy with my blood sugar reading before going to bed, so had something to eat. The following morning my pump read high, but would not give me any insulin (?) so I used the syringe which is for filling my pod to give myself insulin. No idea how much it was as it wasn’t an insulin syringe.

Then I set off for a day in London. I checked my blood sugar twice during the 50 minute train journey and it was coming down nicely, I thought! On arrival at Victoria station I stepped off the train and rambled words to a member of staff. I do remember her asking if I needed an ambulance. The next thing I remember was waking up as I was being put in an ambulance with a glucose drip in my arm. They wanted to admit me to hospital, but I refused as I was going to the House of Commons to represent SPS at the Rare Disease UK meeting. The ambulance driver was a sweetheart as he hailed a taxi and told the driver where I was going. I arrived half an hour late and disorientated I can’t remember anything that was discussed or, indeed, how I got back to Brighton. The only good thing done today was that I submitted the two letters to be given to Jeremy Hunt MP for health and one for Liz Kendall MP, shadow cabinet.

The following day I had arranged to meet another sufferer, Lisa, who also lived in W Sussex, but had to have a day off as I was still feeling the effects of yesterday, so I went the following day instead. She picked me up at the station and headed for a tea room. I have visited her before so we had plenty of chat to keep us going. While at Lisa’s home I asked if she knew Julie. She didn’t, so I rang Julie and handed the ‘phone to Lisa. They exchanged home and mobile numbers and discovered they didn’t live very far from each other, so they arranged to meet up. Nice.

I had had filled out and sent a form for the SPS charity to Waitrose, and this month had an email from them to say we had a charity tub for this month. Nicky and I went and did our thing to promote the event. It was fab with us both given a handful of green ‘coins’ to put in the tub. Having spent too much money and time we decided enough was enough and went home, totally shattered.

On the 16th my bs was high, so again I had to self inject, but at least I had an insulin needle. However, I set the alarm twice during the night so I could keep a check on my readings.

On the 17th David and I went to a meeting for those using an Omnipod. There were about 10 of us but I was the only one having problems. Still, it was a good session and quite informative, so fingers crossed we’ll find it easier to use and manage.

I have been for retinal screening. I’m not expecting any good news, but I will wait and see when the letter arrives.

Some time ago I applied to go to the Eurordis summer camp in Barcelona. Happy to say I was accepted. Eurordis is a not-for-profit organisation that deals with rare diseases in Europe. To attend, technophobe Liz must listen to a webinar, do some studying and then take a quiz before June!!! I’m up for it, as always, lol.

The day before my birthday I had a meltdown and told David I had been feeling low since October. So a plan was put into action – I made an appointment with my GP and am now back on antidepressants.

I have asked for, and received, a new Omnipod. I feel so sure my old one was playing up, not simply me not using it correctly. Blood sugar readings do play an important part in SPS. If it’s high, I am more rigid and it’s more painful.

April 2016

Not an April fools joke in sight! In fact the opposite: David and I went to see the diabetes specialist nurse. With a bit of tweeking it was set up to work properly (I am writing this in May and it really is working, so it must have been the old pump after all).

Nicky and I have joined a pottery class. It’s super as it’s just us and the teacher, Pat. I have made two dishes, one with spoon handles. The other is precious as a diamond from my engagement ring is somewhere in it! I also made, via the coil method, a dog’s head. I used the pic on my ‘phone to try to make it look like Ollie (our dog who died some time ago). It even had the lead hanging in his mouth. I bought a necklace from a charity shop so I could take the fastener out to put on the end of the lead. The day I was painting it my SPS really played up. Sit down, stand up, nothing helped. I couldn’t take any diazepam as I didn’t have any with me… Just before leaving I needed the loo. Once in the bathroom I was so rigid that Pat had to pull my clothes down and sit me down. She waited outside until I called and she then had to re-dress me. In that situation any shyness goes out of the window. I know the reason why it happened.  I was making it for David’s birthday, and this would be the last class before that date. So anxiety and stress were the reasons/factors! Anyway he was delighted with it, but I have since broken the lead!

My rigidity is getting progressive, so I have upped my diazepam and now take 2 1/2mg mid-morning. By the end of the month I began taking 5mg before bed. It seems to be working.

It was my niece’s 21st and so off to Brighton again! Saturday, BBQ, Sunday at the comedy club, Monday and niece Emily’s birthday. I also took the opportunity to visit a sufferer in Brighton. She made me so welcome. We had coffee, a few laughs and took quite a lot of selfies. How can this woman be so cheerful and accommodating when she not only has SPS but also terminal leukemia? 

I have had my blood checked for just about everything. As I stopped taking statins, I wanted to know if I’d need to start taking them again.

I have begun an online genomic course about diabetes. I am doing it in the hope that they will be discussing antibodies to GAD. Both Type 1 diabetes and SPS are the only two conditions where GAD is present in the same way.

On the 29th it was the Tour de Yorkshire. I thought: “Why not go”. As I approached the town via my usual route, I noticed the pavements had barriers in place, so at 8 miles an hour I simply drove down the road. I noticed a few strange glances and a few “Go for it” type comments. But the end of the road was blocked. A very sweet policeman asked everyone to move aside as he opened the barriers. I drove around the edge of the market place, not knowing where I was meant to be to see anything. Fortunately, I saw a friend who told me the best place would be near the magistrates’ court. Even on a mobility scooter it was quite a long way. Having arrived, I switched on my ‘phone to take a video. When I got home I watched the technophobe Liz’s video – 20 seconds of my mobility scooter! I hadn’t realised I had set it to go, and then as they cycled passed I clicked the video button again. Obviously (now) I realise the second press switched it off. Dear oh dear.

May 2016

I have now finished my genomics course on diabetes, but refuse to pay £35 for the certificate! And I have been to the House of Commons again. This time it was to attend the Genetic Alliance conference. It’s such a shame there isn’t time to ask questions. I had given the SPS card to one and all and discovered three people who recognised me as I had given them a card the last time we met.

We had an SPS Charity committee meeting, but as only three of us could attend, we had one committee member via Skype. Afterwards, we took committee member Tony home to Hornsea, and had fish and chips at the seaside (in the car, as it was cold). Lovely.

Vanessa and Ray plus the two of us have decided to call ourselves The Diners’ Club and sample the delights of pub and restaurant food in the area. Tough call, but someone has to do it…

Why oh why did broadband come to make the service faster? It was a Friday and they somehow managed to cut the charity ‘phone off. OK, they fixed it the following Monday, but I wonder how many calls I had missed?

I had the pleasure of meeting a fellow sufferer at Cave Castle golf club at South Cave. She dealt with the sponsorship forms and cash she had collected from all and sundry for the runner we had in the London marathon. Raised quite a lot of much-needed money, so thanks to everyone for that.

I finished the last (of seven) webinars, research and quizzes before going to the Eurordis summer school in Barcelona next month.

We had a lovely weekend when Mike (David’s brother) and Jane – Mike’s wife – spent the weekend with us. I only cooked once! Yippee.

The last piece of furniture arrived for the living room – a cabinet for the Hi-Fi system. David spent far too much money on upgrading the sounds system, but it’s really good to listen to vinyl again.

Healthwise, as long as I keep my eyes to the ground when using my walker or wheelchair, I seem to be managing. SPS is not my boss!

June 2016

I missed three birthdays, but managed to get a haircut and a few low lights put in ready for my visit to Barcelona! Nicky took me to East Midlands airport and she then went on her way for a week in Devon. I had said we needed to leave home at 5.30am. I got up at 4am and a few minutes later the doorbell rang. It was Nicky, so she had a coffee while I got ready. Amazingly, I was not anxious at all. I even managed to get from the car by myself pushing my wheelchair and pulling a case! It’s only a two hour flight to the Mediterranean heat. Landed in Barcelona and took a taxi to the hotel, just a short walk away from the beach. I had arrived on the Sunday as I knew I would need de-stress time. Bearing in mind that I can get lost in a ‘phone box, my room was quite hard to find…two lifts worth of searching and I finally found it. So, to the first day of the Eurordis summer school. What a weird feeling I experienced. Why was I in a room full of disabled people? Even looking at my own wheelchair I felt as though I was in the ‘wrong place’. Anyway the first day’s events made me realise why a webinar, research and quiz, times seven, was so important.

Day 1: Work! I then attended the welcome dinner, and off to bed! The following day and throughout the week I learned so much. I even took the mic to ask questions a few times. I think it was the second day, after talking to the others, I realised I wasn’t looking at disabilities, I was looking at people, just ordinary people! It made me wonder if that’s why ‘normal’ people see the disability instead of the person (just as I did). I feel ashamed of myself, but also it gave me an insight into how ‘normal’ people see people with disabilities. They see the disability before they see the person!

While at the conference, I ‘adopted’ young George. He came with his dad from northern India. He had only one thing on his wish list –  to see the sea for the first time in his life. During one lunch break I got those who could walk to push him to the beach and on another day we went to a beach café. Of course, bossy Liz got others to push him there again! Since then we often talk via Messenger. I also talk to a few others in different countries – all new friends whose disabilities I don’t even think about now.

Nicky spent her holiday in her home village in Devon while I was away and picked me up at the airport. The good thing about being away is coming home, and I had come home with so much new knowledge.

There are those who fight their disability and those who let it rule them. I am in the former group. I go to the supermarket on my mobility scooter most days. Many people wave as they drive by, so I wave back, despite not knowing who they are! All the staff in Morrisons supermarket know me, and don’t see the disability. If there is something I can’t reach on a shelf, I wait for a couple heading my way and tell the wife: “I’ve been waiting for a good looking man, so may I borrow your husband?” Whoever it is, I’m sure I at least put a smile on their faces for a short time.

A few days after getting home I went to see Rod Stewart at the KC stadium. I was called on Face time by one of the people I met in Barcelona, so having swapped the ‘phone around, she was also able to see the gig.

One incident to report: I was cleaning the deep fat fryer. Idiot here empties the hot oil into a plastic milk container. The oil was too hot and melted the plastic and as I had nothing on my feet, the hot oil burnt both feet. I spent a while sitting with my feet in cold water before we attempted to clean the floor. I had to be completely oil free as I was fearful of slipping on anything.

I went to a ‘FindaCure’ meeting in London, then spent the weekend with Claire in Brighton, and we’ve started changing the bathroom into a wet room. This has been my busiest month so far this year.

July 2016

Must get rid of my flip flops, which I wear when gardening. I have had several falls but each time I forget and use them again, and fall! They are now in the bin.

I go to the supermarket on my mobility scooter and on the way back I pick dandelions for my tortoise (George). One day I saw some and rode over to pick them, only to find that as I bent over I had caught the ‘go’ bar. So consequently I fell off and my mobility scooter ended up in a bush. Have to say I was more embarrassed than hurt (but I hung onto the dandelions).

During the month we looked after our neighbour’s dog. She’s a Bizon Frise called Peppa. This small white bundle of cotton wool arrived and for two weeks she tried to wreck our house. Everything had to be put out of her reach. Made us realise the likelihood of us getting another dog is questionable. Whew! She also ate my glasses which were on the bedside table. Still working on the wet room. Apart from that there is nothing more to report.

August 2016

We had a visit from our niece Emma, plus husband James and their young daughter Harper. Emma hasn’t visited since she was quite young. Harper fell in love with George, so we were in the garden most of the afternoon. James works for the NHS and the government, so he told me if I had any questions I should get in touch with NHS Choices. I took his advice and used it. Thanks James.

It was my brother Martin’s 60th birthday. Sue wanted a surprise party for him, so David secretly booked the golf club and we asked Martin if he was free for a “charity” event at the golf club. A couple of days before the party he asked if we wanted a lift and it was clear he hadn’t clicked what was really going on. Everyone gathered at 7.30pm with Martin due to arrive at 8pm. But then Sue phoned to say they’d got lost! Eventually arrived just 20 minutes late, so no real harm done and he hadn’t twigged what was really going on until he entered a packed room. Quel surprise indeed! He was filmed as he came in but, despite his smile, he was obviously dreading it. The food, music and people were fantastic, and it was the first time all of the seven siblings had ever been in the same place together. Naturally, bossy Liz got us all together for a ‘photo shoot. I had to be at one end as I am the oldest, and at the other end was the youngest (brother David). A VERY good night was had by all, even Martin!

We went to see a band doing a charity event in Hull featuring committee member Tony. He plays almost everything, but doesn’t sing. That post is filled by his rather hunky brother who I think should be on the XFactor, as his voice is so much like Paul Rodgers of Free and Bad Company.

September 2016

I had a spray tan and hair cut before we headed down to Claire’s in Brighton at the start of our late summer holiday. The following day she drove us to Gatwick where we set off to Gibraltar! We stayed on a 5-star moored cruise ship which was absolutely lovely. My only problem was that everything in the room was done by remote control (no good for technophobe Liz).

I have been to Gib twice before, but it was David’s first time. We didn’t waste one minuet during the time there. I was shattered every night. It’s not very disabled friendly, so we spent quite a lot on taxi fares. We had taken a taxi trip to the top of the rock and St Michael’s cave was as beautiful as ever. Another day we used the cable car up the rock, and were greeted by the Barbary apes. Never take any food with you is the advice. Of course, I did as I had bought some Spanish tomatoes and they were in my bag. Don’t have a go at me: Remember, I have memory loss. Anyway, as soon as we got to the top one ape was unzipping my bag, so I whacked its arm and told it to bugger off, which it did – straight onto a girl’s shoulder. She was amused by it, but didn’t realise it had unzipped her backpack and ran off with the contents. Despite the fact they are wild animals, I am not frightened of them. I think if one is stupid enough to antagonise them, then they would bite. So just let them be.

We went to Africa, but first had to go in to Spain to get there by ferry. Taxis in Gib can take you to the border, then after passport control you get a Spanish taxi. Bit off a faff getting the wheelchair in and out of taxis all the time, but of course I didn’t have to do it. We went to Morocco, but I think it was a bit of a con. However, we can say we have been to Africa!  We took a boat trip in the bay of Gib to see the dolphins. It was soooo relaxing. They are so beautiful. As it was lovely dry heat there I was less stiff which made a big difference. Anyway, at last the holiday finished and we flew home. I love going away, but I also love coming home. However, I had had to cancel three rare disease events to be able to go on holiday. We went to stay with David’s brother for the weekend, which actually extended the trip until Thursday as I was going to two events in London on the Tuesday and Wednesday. I was up at 5.30am each morning to travel with Jane into London. Both events were good. The first was with the Genetic Alliance (I was filmed there, I think it’s on our website?). The second was for Commissioning in Healthcare. One of the things they spoke about was saving NHS money. I asked about SCIg. (Subcutaneous Immunoglobulin) but no-one knew nothing about it, but I am still (December) writing to NHS Choices and the government to find out more. On the train journey back with Jane on Wednesday I started coughing and the following morning an unknown bug had started and I felt quite ill with a nasty cough.

October 2016

I signed up for an online course on ‘Improving healthcare through clinical research’. Don’t ask if I have even started! At the end of the month I saw a GP about my ‘bug’. He gave me antibiotics, which did clear it up, but if one has a cough for more than three weeks they should have a chest X-ray. Nothing else to report as I felt too ill.

November 2016

Not a good start to the month as I attended a funeral for the father of one of my sisters-in-law. Such a shame as he was a lovely man.

Nicky and I went to London to see the Oxford Street lights. She has never seen them before. We arrived about noon and I took her to my favourite café for lunch. The rest of the day was spent finding places to see that were in my book about London’s bizarre and curious. Nicky did have to push me a bit, but I had taken extra diazepam, though perhaps not enough.

The following day I sold poppies in Morrisons for three hours. It was ok as I could sit on my mobility scooter. A good day for a good cause.

My best friend Vanessa caught her heel coming out of a restaurant and broke three bones in her ankle and tore tendons. She spent a week in hospital, poor thing.

My favourite time to eat is about 7.30-8pm, but I’ve found if I eat about 6pm it means I have the whole evening, unless the ‘phone rings, and that has happened a number of times. Not the home ‘phone, but the charity ‘phone. I just cannot answer it, so David puts my meal in the oven to keep warm. He does quite a lot of cooking these days which I’m sure he enjoys (not).

I fall asleep early every night, but one evening I fell asleep in the middle of doing a blood sugar! All there is to do is put a stick in the monitor, prick finger and the answer comes up in 10 seconds. How did I do that?

I saw another GP to ask for a chest X-ray because of my infection and had it done the following day.

I was Face timing  another SPS-er in the US, when I heard David calling for me as the living room ceiling was dripping. I was stuck between a rock and a hard place. I managed to grab a bucket, but I couldn’t leave my friend on the phone. Priorities, you know! So I left Dave and Niagara Falls in the living room to it… Meanwhile, my more important conversation began quite happily, but then she had tingling in one of her fingers, then her thigh began spasming. She was getting so much pain and was very distressed. Luckily her mum was passing, so help was at hand. Her mum asked me how long it had been happening. She went to get a wheelchair while I stayed on the‘phone and told here a joke about the nun seen wearing a tee shirt, along the top it said: “I am a virgin;” across the bottom it said: “This is an old tee shirt”. So then went to hospital and some days later we spoke again she told me she wanted to get a tee shirt like that one! Anyway, back to the living room where part of the ceiling had come crashing down! Turns out it was the new radiator in the wet room that had sprung a leak. To fix it we had to cut a piece out of our bedroom wall to reach the pipes. As brother Martin always says: “It’s not a problem, it’s a task”.

The next outing was to the Outlet near York with Nicky. Good day, but once back in the car I wanted to do a blood sugar. Strips and pricker found, but no Omnipod ! Nicky went to the only place we stopped for coffee, but to no avail. I change the pod every three days, and yes of course it had to be tonight when I should have changed it. I rang the company only to be told a new one would cost almost £300. David rang Nicky and asked her to search the car, which she did and found it. Phew!

December 2016.

Went to an Xmas market in Hull. Fab. I have now finished all my Xmas pressy shopping. David and I went to Martin and Sue’s for dinner, plus all the other guests, Claire and partner Gary, Tom and partner Sarah, brother David and wife Sarah. This wouldn’t have happened if Claire’s pregnant daughter had not have been in hospital with a urine infection, as the only people invited were David and Sarah and Claire and Gary! The starter was amazing. Martin had made a wooden thing which reached the entire length of the table and was completely full of Mediterranean  starters which Sue had made. Super food and super family.

Got Chris a polo lesson for his birthday. It was so cold, but thankfully he wore thermals and had a really good time, although the man running it was so full of himself, a real know-it-all who kept getting his “facts” wrong.

The next event was pre-Xmas drinks at Simon (brother) and Janet. They live in the next village and the house was full of family and friends. As usual I had the charity cards with me and one woman who happened to be a social worker was very interested as she thought she knew someone with SPS who is not aware of the charity.

We had Xmas dinner at my brother Steve’s home instead of Martin’s. All the family was there and it seemed all have done something apart from me. Still, despite my lack of contribution, it was a lovely day.

Thankfully Xmas is now out of the way. I went to London and stayed overnight with Karen whom I met at the summer school in June. She lives in Switzerland, but has family worldwide. We had a super time, apart from the fall I had in the flat. No real damage done.

We had New Year’s Eve dinner at Martin and Sue’s. By 9pm Sue had her pyjamas on and by 11pm we had all gone home! At midnight we tried to send up a sky lantern, but it was too windy! So ‘bye to 2017 with some good done, but no research imminent.  Just realised, as I update this from my calendar and not my note book, nobody really knows what else I do! Perhaps next year I will use both.

 

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.