Well, I hope this year will make for a little bit more interesting reading than the last one. My PA, Nicky, will no doubt read this, but I have to say it, “Nicky, your sense of direction really is worse than mine!” We went to B&Q to take back a drawer from the new kitchen. It’s only a few miles away and she has been with me before, however, this time she thought it would be a good idea to get home a different way. An hour later and neither of us knew where we were! To cut a long journey, sorry story, short - we ended back at B&Q. I just want to know how she did it! I must admit, it was quite good fun watching her panic…
Mike has been up for a visit and I have been to Brighton to see my sister plus an interviewing session at Hull Uni. One of our friends, and a committee member, came over to have a jamming session with David, and I was given help with the beatbox which David got me for Christmas. I can’t really play my guitar now as by the time my fingers get loosened up, I have had enough.
Oh! Forgot to tell you about the yearly visit from my social worker. David and Nicky were both here when she arrived. The anxiety started as soon as she walked in. I began holding onto the chair quite tightly and then my back started to spasm. David held me from behind to stop me falling and Nicky tried to hold my hand, but I couldn’t let go of the chair. I told my social worker that it was because she was there. She was a bit shocked, but at least she was able to see what unwarranted anxiety is like. I told her it was not her fault, and that it simply just happens when it wants to. So here endeth January.
All the usual stuff happening, out and about etc. I had been out shopping with Nicky, but as I approached the garden gate I stumbled. On what I have no idea, but in the split second it happened/happens the feeling of dread kicks in. I was lucky, as Nicky caught me. A ‘normal’ person would just get on with what they were doing, but I just went rigid. Pain and anxiety stepped in and it took a while to get over it. ‘It’ – nothing really happened! Anyway, we had a cuppa tea and carried on (remember the song ‘Right said Fred’?).
David and I flew from Humberside airport to see the northern lights. It started with talks given by numerous people, including Pete Lawrence from ‘The Sky at Night’. We flew to the Hebrides. We would have seen more of the aurora if we had gone the following night, but the experience was still amazing. Although the lights were not vivid, we did see green lights and it was weird to see stars between the earth and the aurora. Pete was onboard and quite happy to tell us where to look and also to talk to us (I don’t mean just David and I). I asked if I could have his Sky at Night t-shirt to auction off for our charity, but despite taking my card and his kind of half promise, I have not received it. We got back at 1am. Both still too excited to sleep, so we watched a film. Why did I wake and get up at 7am? By 9am I was asleep on the sofa and didn’t wake again until lunch time.
On the 25th I attended a meeting at the House of Commons as a representative of SPS which was hosted by Rare Disease UK. The details are on the web site. Before the event began I wanted ‘photos of the people who would be speaking, with me in front of the Rare Disease banner. I was chatting away to one of the speakers, and realised I hadn’t introduced myself. He said: “I’m Freddy”. Later, I realized it was Lord Howe. Don’t know why I am telling you this, perhaps it’s because everyone referred to him as Lord Howe apart from me! We were all fed and watered, but when I was offered mine I told the waiter it was a little early for me, but could he put it to one side for later. When the meeting concluded, I was given my food. It was served on a slate and had a H of C cup filled with cheese sticks on it. I took mine outside and sat looking at the Thames. It was so peaceful, I could have stayed all night. A little time had passed and I saw two Bobbies. When they approached, I asked if either of them had a tissue (no, you daft bats, I was not feeling tearful) as I wanted it to wipe off the last of the avocado from the slate, and I didn’t want my nice leather briefcase stained green when I purloined it. They obliged, and when I asked if they would feel compelled to arrest me, they laughed and the reply given was “We all like souvenirs”. My next question was: “How do I get out of here?”. They rang, and I then had an escort. To those who have not been, I have to say it’s a massive building. My escort kept getting lost, but in the end we found the exit. He hailed a taxi and I was soon back at the hotel. The following day I was going to go to London zoo, but it just rained and rained, so I went down Oxford St. I wanted to see the Fleet tributary which runs through one of the shops on its way to the Thames. The shop is called Browns, and they keep goldfish in the stream. Lovely. As David had driven down to his brother’s, I headed to Marylebone train station to get the choo choo to High Wycombe, but he didn’t get there in time so Mike picked me up from the station. His wife, Jane, and I spent much of the time in the kitchen cooking and chatting.
What can I say day about this month? Nothing out of the ordinary happened! It was funny when I got up on my birthday as David had a pile of presents and with a big smile said Happy Birthday. I had completely forgotten!!!! (must be an age thing). He had also organised a meal out with Martin and Sue but it really felt like just another day.
I had an appointment with my neurologist. I saw his registrar who, to my amazement, knew a lot about SPS. I give him a card and he said he would email me. We will see! Nicky and I went shopping. First stop: Boyes, then to the wood yard, and then to the Westwood to take her dog for a run. I got out of the car and just lent on it. I tried to throw the ball. I can throw and I can aim, but not at the same time! So I only had a couple of throws. Then, as we went to get back in the car “where is my wheelchair?” - apart from gone! We tried to remember where I last used it. Not the wood yard, so it must be outside Boyes. We rushed round the town to get back and, lo and behold, there it was. I must have put my shopping in the front of the car and just sat down. Phew! Just another little adventure.
It’s David’s 60th this month and I have been planning a holiday. So on the 15th we stayed at the Hilton at East Midlands airport. My super-duper travel agent and I had planned everything secretly. She really didn’t disappoint. She had let the hotel know it was an ‘0’ birthday. As we ate dinner I had a quiet word with the waitress as I had expected some sort of treat for David. She brought a chocolate torte with happy birthday written in icing around the edge of the plate. When we got back to our room, we found a big Happy Birthday banner across the top of the bed and a three teired‘cake’ which was made out of white towels, large, medium and small, and decorated with little shiny hearts etc. It really looked lovely. We were taken to the airport in a Mercedes. Then off we flew to Barcelona. Amanda, the travel agent, had organised the transport to Montcada Hotel. Wow, it was beautiful. We did the usual thing, the city bus tour. In the evening we went to a super steakhouse called Arcardo (perhaps not the correct spelling). The steak was Argentinian and perhaps the best tasting steak ever. We spent the following day exploring and watched the magic fountain during the evening. Always good to see the coloured fountains while listening to music. Naturally, the song Barcelona was played. Saturday was the real highlight, though, as we had tickets to see ‘our’ team play football at the Nou Camp. It goes without saying that Barcelona won 2-0. We spent Sunday here and there, and went on a cable car where the views were amazing. Later, the weather was perfect to laze in the hot tub on the roof of the hotel. Of course, going home day arrived but it had been a fabulous trip. I have to say a big thank you to Amanda, and if any other sufferer needs someone to plan their holiday, call me and I will give you her details. So we have both now had our 60th birthdays.
On a lovely sunny day I spent some time helping Nicky with her allotment. Up and down with the wheelbarrow I went (obviously there was stuff in it or it would have been rather pointless). I thought of it as exercise to help ward off bingo wings. That was until I fell, or should I say crashed, the wheelbarrow into a post which left me not only a little bruised but with nettle stings down my left arm and leg.
I went shopping for a pair of shoes, not convinced the ones I tried on were really what I wanted, so I wandered off. It was only when I got home I realised I still had one on. Yes, I really do mean one shoe of mine and the other belonging to the shop! When I rang them to explain, they thought I was confessing to stealing, so I told them to be on the lookout for a one legged thief. The problem was sorted out the following day.
Unfortunately the committee meeting had to be cancelled as only three people were able to attend. Mike came up for golf and David went back with him for a few more days golfing. We went to see Status Quo which was a belated birthday pressy from Martin and Sue. Since I have had SPS, Quo have been the only band I have tried to avoid, as it upsets me being with people and watching them dance as I used to do. Fortunately on this occasion we were outside, and everyone was sitting.
Do you remember July 2013 when I crashed the car and took myself off the road for a year? As a diabetic I have to renew my licence every three years, and at some point last year, the reminder came through the post. This month I was asked to go for a medical. When the day arrived I was feeling very nervous. To cut to the chase I didn’t attend. I had lost my confidence as I have not driven for nearly two years. It feels like I am losing my independence – not a good feeling, but everyone agreed it was the right call.
It was Vanessa’s husband’s 60th birthday, and I wondered why she was being particularly nice to me. Should have guessed - she wanted me to make the cake! So I created a chocolate cake sprinkled with golden popping candy on the top. It also had a guitar shaped spatula ‘stuck’ across it, as Ray is a musician (Vanessa will no doubt use it at some point). The ‘surprise’ party was at the Sun Inn in Beverley. Ray was playing there when we all arrived, so not really a surprise party after all. Later, David and I chased off elsewhere for the joint birthday dinner for Joyce and Claire. Claire looks fab for fifty (bitch) lol.
At the end of the month, David and one of his friends went down to stay with Mike for a golf trip. Fab, a few days where I can do what I want, when I want. Well, that didn’t happen! A few hours after they left I started with a bug of some sort. You don’t need the details, but it involved opposing orifices, and the first night I slept on the sofa. So much for doing whatever I wanted to do. Watching endless films, and staying reasonably close to the loo was about all I could manage.
Since I am no longer driving, David thought it would be a good idea to upgrade my mobility scooter. I am now the owner of an 8 mile per hour model. Road-user friendly, freedom, independence. Well, that’s what I thought. Having read where I can use it, it seems I can wiz around the town, but not get to places I had actually wanted to visit. It’s orange, so I have named it Kota simply because I love wildlife, and Kota is an area in Sumatra where a lot of studies are done on orang-utans. (Bet David Attenborough would want one just like it).
June means the folk festival, and yes I decided to go across the Westwood on Kota! (Apparently an illegal thing to do). I was half way across when I got a text from Nicky asking where I was. My reply was: “Stuck in an (expletive) ditch”. As the cows approached I bibbed the horn - no pun intended! It didn’t scare them, but they did decide to move away. Having arrived, I saw Nicky waiting for me. We had lots of fun meeting people we have seen at other folk festivals. The main attractions, Ralph McTell and Barbara Dixon, were super. Not sure of the time we left, but it was dark. My scooter has LED lights, and for those who do not know, it means all can see me, but I can’t see where I am going! I drove it along the path and crossed the road to get to an unlit path across the Westwood. I know the path very well, as I used to spend many a happy time there. Of course, that was in the days when I could walk! For those of you who are now lost, Google Westwood Pastures, Beverley. I was blinded by the dark and only drove in slow mode, but by George I made it to the end, where Nicky was sitting in her car waiting to see me arrive. What a sweetheart! This is a long story, so I will just say that as I passed Nicky’s house, there she was again. And then I arrived home! I had been sitting on it for about six hours, and found I could not stand without help. My back was so stiff I had to take more diazepam and ‘be’ undressed. Sod it, I still intend to go again next year, but will take extra diazepam while there!
I had been into town one Saturday and came back via the scenic route. When I arrived home, the Jersey Royals I bought had disappeared, but the following day I made the same journey and found a trail of the aforesaid potatoes on the scenic route and no, I didn’t pick them up, but had to laugh.
I had some Tesco vouchers, so David and I went to London for three days. We arrived at the hotel, had a walk, a meal and then returned but before we unpacked I went into the bathroom to find water dripping from the room above. Wet floor – Liz goes into panic mode, as do my back and legs. Fortunately, we were moved to a different room. Higher up, eighth floor. Bigger room and a view of many of the sites in London! The following day we went to London Zoo. It took a while as we had to cross Primrose Hill park. As it was all downhill, I sat in my wheelchair and almost didn’t hold on. I knew I was going too fast when the chair ran onto the grass and I was thrown out of it. Totally uninjured, as I skidded on the grass, but with hindsight I did feel I had been a bit silly. Having said that, why can’t a sixty three year old have a bit of excitement once in a while? We arrived at the zoo and discovered it was free for me, as I am disabled, or perhaps it was free for ‘my carer’. I remember going to London Zoo when I was at school, in fact I have a couple of pics of me riding an elephant. To be honest, we both felt it was a bit of an anti-climax as the lions were away somewhere, but most importantly there were no elephants!!! Anyway I took ‘photos of every type of animal, and one of the meerkats especially for my brother Martin as every time he is sitting outside a bar or coffee shop he does a very good impression, although he believes he is simply people watching. Anyway I digress. We ate at the Aberdeen Angus steak house in Leicester Square – yum, yum. Not knowing where to go, we began to walk. I had no idea where we would end up, but I had seen adverts for ‘Sunny Afternoon’ and each time I saw them I told David I would really like to see the show. As we walked around a corner I saw the Harold Pinter theatre situated in the West End, and another Sunny Afternoon poster. David led me in, as unbeknown to me he had bought the tickets a few days before. Wow! So is it ‘Great minds think alike or fools seldom differ’? It was a fab show telling the Kinks’ story. Ray Davies was, and still is, one of my all-time favourite song writers. The following day we used the Tesco vouches on the London bus city tour, which included a Thames river cruise. Very enjoyable! Just managed to get to the station on time for our train home. Had a super time away, but my body needed a few days to get over it.
We have decided to make some alterations to our conservatory. As there is a step down to get into it, it’s a bit problematic for me. To begin with, we have had a larger radiator fitted. I can’t help thinking it will take some time before the room will be useable as most of the work is going to be done by family and friends. They are all professionals, but are going to be fitting us around their ‘work’ time. The radiator was fitted by my nephew Tom with help from Martin (looks good).
Just for a change, I decided to go to Hull. Sitting in my wheelchair I basically let myself roll down the avenue. I began to feel a bit anxious and crossed the main road to get to the bus stop. Having got on the bus I could feel myself shaking a bit. I had no idea where in Hull the bus would stop. Fortunately, it dropped me off exactly where I wanted to be. Despite that, I still felt anxious. To cut a long story short (which is not my forte) I did some clothes shopping (something I do not enjoy), took some pics of this and that, took a diazepam and went home. Still anxious, but let’s just say it was an adventure. Not sure when or if I will do it again! I suffered for it the following day.
Chris came for a visit and he and David went to the cinema. Lovely, as they ate out too, so I only had to cook for me, and had the full evening to myself! Due to a leak in the bathroom, which was sorted, we have now had the living room ceiling re-emulsioned. I took myself off to be beautified – hair, nails and waxing, all ready for our first cruise.
We flew from Humberside airport to Venice. We had been there years ago. I took a pic of me, hoping to get one taken in the same place in St Mark’s Square. Unfortunately, it was a case of ‘off the plane and onto a coach to the ship’, so no ‘photo! As we boarded the ship we found all the staff very friendly. We set sail through the Grand Canal. It brought back memories as we saw the Bridge of Sighs and the gondolas. We sailed past St Marks (the place I had had the original ‘photo taken). We managed to find our ‘state room’ – how super does that sound? It was a cabin! We had opted for one with a big window and I have to say it was really comfortable. There were so many places to eat, it was difficult to choose, but we found one and the food was lovely.
Day two; Dubrovnik. We meandered around the town and saw the impressive city walls. It was a spotless town but we were ‘waking’ on marble. Not so good when one’s head sees it to be even more slippery than it really was. Thank heaven for my trusty wheelchair! I was as happy as a pig in muck as the temperature was 31c. David, however, tried to find any shade he could. Thankfully, there were plenty of fountains where we could fill our bottles with water. We went to the harbour and, as we were both feeling tired, we got a taxi back to the ship. But it had been a lovely day. Each evening we found the entertainment well worth watching, but for me it was the food that stood out.
Day three; A day at sea sailing along the Adriatic. There was plenty to do. Swimming, sunbathing, quizzes, entertainment. We met up with a couple who, like David, enjoyed the shade. I spent as much time as possible in the sun. I’m not sure when David and I met up that day. Oh yes, dinner time.
Day four; Greece. We left the ship late am and took a taxi. The driver (Sotriris) was super, and took us to the Parthenon. As I had my wheelchair, the police let him drive as close as possible. He then pushed me to (believe it) a lift for the disabled. The view of Athens was wonderful, but traversing the Parthenon was difficult. Even I was feeling the heat. I hung onto the wheelchair as we walked over marble, stones, sand and everything else (put in place to scare someone with SPS). We did, however, manage to get around it. An hour later we descended to see Sotriris waiting for us. He then took us to the temple of Zeus. We didn’t have time to read everything, but David’s knowledge of both history and mythology made it much easier to understand everything. I saw a sign saying ‘Keep out’. To me, that is like a red rag to a bull. I knelt down with my head under the rope next to the sign, and David obliged and took a ‘photo. As we were walking away two police officers came over (gulp). They asked me to delete the ‘photo. Despite my smile, sad face, and almost begging them, I had to delete it. David said they should arrest me, but with a laugh they took my camera and took a pic of us both next to the sign, but on the right side of it. We then went to a market where I bought a type bowl ‘thing’ on legs which was made from an olive tree. We then paid a visit to the Olympic stadium. David did some videoing of it, but I stayed in the car as I was tired. Sotiriris asked if we would like to go to his home for a coffee, but sadly we had to get back to the ship. We exchanged ‘phone numbers as he and his wife want to come and visit England, and, of course, we told him they could stay with us. He has a holiday home in Greece in which he said we could stay. What a wonderful day it had been.
Day five; Turkey. Once past the buy me! buy me! people we entered the market. I got a pair of leather flip flops for 20 euros (they wanted 50). Wish I had bought more as they were so comfortable. David bought a leather belt (!). Later we went to Ladies Beach. I was determined to swim in the Aegean, and I did! The dry heat is fabulous for me. I felt loose – wonderful. David videod me almost dancing my way to the sea, and coming back again. If only I could be like that at home.
Day six; Another day at sea which was again good fun. We booked at one of the restaurants, Cagneys, which was a steak house. My, oh my. We both ordered steak which was superb.
Day seven; Split. A few members of my family rave about the town. However, there were too many steps all over the place for me, plus we were on marble again. David managed to see more than I did, but to be honest during the week I had walked far too much, and was exhausted. We stopped at a café which had an air con mist outside, and we were sitting next to a sign which read “Hungry? We will feed you. Thirsty? We will get you drunk. Lonely?....we will get you drunk”. Hee, hee. Our only problem was that they only accepted their own currency, so David had to go to a hole in the wall to exchange Euros. Back on board for our last night. I had mixed feelings – love the heat/love home. The latter won. We were back in Venice when we woke. After goodbyes to staff and people we had met it was back to the airport and not too long before we were home again. Mmm. I was surprised to find that Rodney, the head chef, lives in the next village to us. He gave me his email address, but I don’t think we could afford anything we may ask of him.
Back home from the holiday and the work on the conservatory begins! Stage one - all the windows have been changed. Something to do with letting the sun in or not, far too technical for me. The day it was being done my anxiety kicked in. Why? After all, it was the beginning of what we wanted. SPS life seems to be a type of conjoined twin thing, and the SPS twin has its own mind!
At last I will be having the cataract on my right eye sorted. I went for the pre-op visit, and as their computers were down I was given a date for the operation there and then. I stopped taking Simvastatin after a visit to my new GP, as I had read articles about side effects. Simvastatin is the cheapest statin available, but I will wait about three months and have my cholesterol checked again. I advertised my old mobility scooter on the Facebook site, and it was gone (for free) to another sufferer within the day.
Vanessa took me to the Outlet for some retail therapy. For those who don’t know it, it’s a big shopping centre. All well-branded stores at cut down prices. Really, it’s a fun day out, why I don’t know as neither of us like shopping. Perhaps it’s the company combined with the laughs and chats we have. Reminiscing and sharing memories of days gone by. We go our separate ways and then meet for coffee (my contribution to the day out).
We have had our committee meeting this month. I always stress beforehand, but that’s par for the course with me. It feels like there is too much to do (but there really is very little). All I need to get out is paperwork and check the time for David to pick up a member from the train. I just go into ANXIETY mode, and anxiety always wins. Having said that, as soon as we get started I revert to ‘normal’ Liz, lol.
As the conservatory is almost finished, we are working backwards through the house, so the living room is next. Nigel – neighbour and friend – offered his help, but stubborn Liz had a hissy fit as I wanted to do it! I don’t care about my age or disability, I just wanna, wanna, wanna do, for as long as I can. It ended up with me in tears (privately) but I will not give in. The colour chosen, I emulsioned the room, in my SPS way! David then thought it would be a good idea to have wallpaper on one wall. When it arrived, guess who did it – correct, me. OK, it may have been done in an unusual fashion, but when one has SPS it’s easier to do things in a way which suits. So that’s what I did, and I think it’s okay. After that I had my cataract operation, so now or in the near future I will have two un-cataracted eyes, and hopefully will be able to see! Fairly uneventful month (ha, ha) but we still ate out with family and friends.
The conservatory will be finished this month, but I (eye) found it funny when the guy who was fitting the blinds rang to say he had injured his eye and had to make it a week later. Perhaps we could form an eye club as it was the same week as I had my post cataract op visit? Table and chairs arrived, so all set for our first dinner party. It was my sister in law’s 60thg birthday party – we didn’t go to it! The stress of Xmas has been building up since October. I just couldn’t handle the journey, the people, the everything. I was determined not to be beaten and invited Martin and Sue for our first dinner party. It all went well apart from Sue who sat down and broke one of the new chairs (not her fault, must have been a flaw. No harm done and quickly replaced). I have ordered a new carpet for the living room, but Liz can’t wait, so proceeds to pull up the carpet and underlay with the help of a Stanley knife and some string! David’s face said it all when he saw what I was doing (she is overdoing it- again). Well, of course I was, and will do for as long as possible. I admit I was exhausted by the time I finished. David took it all to the local tip and that night we had a takeaway. It was very echo-y, due to it being a concrete floor, and I managed to smash the lid of a crystal bowl David had won when playing golf in Ireland 30 years ago. I think I was more upset than he was.
On the last day of the month I went for my new specs – yippee! Oh! Forgot about this, my mobility scooter didn’t have much charge left, but as I was so keen to get my glasses I still used it. I managed to get to the shop, asking a complete stranger to take a bag of clothes to a charity shop on the way. I knew I would not make it home, so I called Nicky to ask if she would pick up my charger from home and meet me at the library, despite not asking if the library would be kind enough to let me plug it in there. So Nicky arrived with the charger while I was being told they could not help! I asked to see their electrician and after lots of smiling and a short conversation it was plugged in – result! I held Nicky’s arm to her car and home we went. David took me to pick it up later and I was able to ride it home with the lights on. One last thing, why did I choose a time when feeling as anxious as I was? I put two questions on every SPS web site in the hope the answers would be helpful for any research in the future. I have been inundated with replies – that’s good news.
Here we are on the Christmas countdown. On the first day of Christmas my true love brought to me (wrong song) a new carpet! Super, no more echoing, although 80% wool needs hoovering every day – Nicky, where are you? It is Chris’s birthday and on account of his anti-fracking lifestyle, we were unable to send a card as he has no address. However, we messaged him and he told us he was spending the night in a tree house, and partying to boot. How he managed to stay up there all night is beyond me. Anyway at least he didn’t fall out!
I had a call from Nicky and she picked me up to see the Christmas trees in Beverley Minster. There were so many. I will try to get one for next year – for the charity. Christmas, this year has been such a struggle for me. I can’t concentrate, I am continuously anxious, and just wish it was all over.
We invited Ray and Vanessa, well actually, they invited themselves, for our next dinner party. Four courses prepared and 6.30pm arrived, but no friends. When I rang, I was informed it was the following evening. Just can’t get anything right. Fortunately, the meal was a cold starter (went into the fridge). Main was Raghu - even better to be heated the following night. Desert was a chocolate log with raspberries, blueberries and Greek style yoghurt, so that was safe. The following evening went well. We ate and then played quiz games from apps on the tablet.
I organised an AA party again, but I don’t think it was as successful as last year’s party. So have decided not to do it again next year. Although you have to remember, I was not in a good place myself.
The new TV stand arrived and both David and Nigel managed to get it in place, plugs and all. (I stayed out of the way). We went to Martin and Sue for Christmas dinner. My contribution was a Pavlova and piles of Yorkshire puddings - weird combination! I was concerned because we ate at about 2pm. As I only eat in the evening, my body is a bit insulin-resistant during the day, so I had double the insulin for the meal. Screwed up Liz just wanted to go home, and when we did all I could say was “Good, that’s one day done”.
Chris came on Boxing Day, so another Christmas day and another Christmas dinner. To be honest, it was an enjoyable day, but yet I just wanted it to be over. It was our 35th wedding anniversary and we had been invited for dinner at a friend’s house. I really hoped David had not organised something, but thankfully it was what it said on the label, dinner with Mike and Evon. We had a really enjoyable evening. New Year’s Eve, we had Chinese takeaway and fireworks at midnight. Goodbye 2015! One last thing: Each and every day I spend hours on the web, ‘phone and skype. My days are full, and evenings at times. For anyone reading this, I wish you a happy and healthier 2016.
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.