Well, that was certainly a long break! Having said that, the only thing I have been remiss about is updating my diary. There is rarely a day goes by that does not involve something to do with SMS. In fact, when I think about it, I work harder now than I did when I was nursing. I don’t mind — but I do miss the salary…
The East Riding Carers Support Service have published an article about SMS. I am still puzzled as to why. After all, it is carers’ magazine. It is a concern of mine — who cares for the carers? Everyone who calls at my house asks how I am. If anyone ‘phones it is the same. But who asks, “How is David”? He has five slipped discs, and is always in varying degrees of pain. I suppose they still think his primary role is my carer. Wrong, sad but true.
If you look back you will see a reference to David putting his beloved car (a Subaru Impreza Turbo) before myself and the kids; well, he has now bought a Subaru P1, a limited edition, apparently, but I’ve no idea, except that it’s blue. It took me three days to even realise it was on the drive — he took me to the garage to fetch something and I went straight past without even noticing. I think David was a teeny bit annoyed and he stood there like a man posing, introducing something special and I hadn’t even spotted it. So I expect that apart from falling further down his list of priorities, we will be living on bread and water for the foreseeable future.
I kept the appointment with my consultant for ‘people with physical disabilities’ (normally I ring to cancel, as there is no point in wasting both his and my time if there is no real change in my condition). I was feeling so low I asked if I could have a plasma exchange. Naturally he said no. I had told him about the non-SMS ‘problems’ I was having at home. He obviously realised my state of mind and referred me to my original neurologist. I will be seeing him in June.
However, there is no doubt my SMS is getting worse (although I try to kid myself it isn’t). There are good days and bad days. On a scale of 1 to 10 (10 being bad), a good day is 4 and a bad day is 6. So really I should be grateful as there are others who would be delighted with that. I can still (occasionally) drive my car, but the only things I really drive are people — I drive them mad! Most of the time I manage around the house. The garden is OK, providing I have my walker. I use my walker when I am out, and a wheelchair if I am going to be out for a long period of time. I don’t have the confidence to venture out alone which frustrates me more than anything. It seems so totally irrational. For example, why can I cross a road if someone is with me, but can’t if I am alone? That is just one example of this weird phenomenon.
I have to deviate a bit here: Have you noticed people who ‘drive’ motorised scooters? It seems everywhere one goes there is a motorised scooter aiming for an unsuspecting pedestrian — myself included. OK, let’s get back on track again. I am hoping this is just another trough I am going through, and that I will return to ‘normal’ again.
May 1: One of the saddest days of my life. Mum-in-law died. She had been living with us since last July after being diagnosed with terminal cancer. During that time she had a heart attack and two cardiac arrests. She never complained or told me if she had any pain, although fortunately she didn’t really suffer until a few days before she died. She was at home with all the family around her when she died, which is what she and we wanted. What am I going to do when it hits me that she is no longer here? Typical of me — here I am wondering how I will feel and not even considering the effect it’s having on David…
We have had another charity committee meeting. One of the things we decided to do is to have an awareness week in September.
I have seen my original neurologist. He wants me to try IVIg. I don’t know if I mentioned it earlier in this account of my life with SMS, but I drink vodka to ease the stiffness — a bottle usually lasts me about 2-3 weeks. My consultants know, and don’t have a problem with it. I purposely didn’t have any the day of my consultation, and could barely walk. I wanted him to see me at my worst. After leaving his room, David and I entered the lift and as usual there had to be an amusing incident. What could be the worst situation for someone suffering from the startle response (one of the symptoms of SMS)? Don’t know? Answer: Being stuck in a lift with someone suffering with Turettes Syndrome (sorry, not sure of the spelling). I bet the chances of that situation happening is about the same as getting SMS. Every time he shouted or made a high pitched sound, I jumped! I wonder which one of us was the most embarrassed. I’m sure he must be used to people looking at him, but not used to someone jumping at every noise he makes. I wish I had had the time to explain that I knew what his problem was, and had been able to tell him mine. If he had the same sense of humour as me, I imagine we would have both have curled up laughing.
I received a ‘phone call on Wednesday evening at 7.30pm from a doctor at Hull Royal Infirmary telling me I was to be admitted the following morning at 9am. I was to begin a 5-day course of IVIg (Intravenous immunoglobulin) on Friday. I arrived at the hospital, with step-mum there to keep me in line, and was met by Dr Nandakuma. I asked him why I was being admitted the day before my treatment was to start. He explained that I could well lose the bed if I were to wait until the next day. Anyway, he formally admitted me and, after giving him a million reasons as to why I could not stay, he gave in and said (in a defeated way) “Oh, alright then.”
I arrived the next day feeling a bit apprehensive. In fact my worries proved to be unfounded. The nursing staff were very good. There were quite a few amusing incidents during my stay. The first was the morning after my admission. I went to get a shower about 6.45am. I had almost finished when one of the nurses called to me saying they needed my room and I would have to move. When I came out of the shower, my bed, case, clothes, everything had gone! I had to search the ward for my bed. When I eventually did find it, I also found I had gone from a single room to a 12-bed ward.
I spent a great deal of time that day being talked at (yes, talked at, not to…) by Joan, who was in the bed opposite me. She told me that her hair was a mess, so I used my styling spritz and a hot brush to sort it out. The next morning I went off for a shower and smiled at Joan as I walked past. There was no response. I whispered “good morning”. Still no response. When I came back, she said “Hello”, and told me she had just woken up. It was later that day I found out she had a glass eye and that she can’t blink!
One of the other ladies had been for a shower and told me she could not wash her hair as she didn’t have any shampoo (she hadn’t seen the gallon bottle on the floor of the shower cubicle floor). So I took her to a single room with a wash basin and washed her hair for her. Another lady was having a hot flush. I was able to help out there, too, as I had taken a cooling spray in with me (expecting the ward to be roasting). Word got around quickly that if anyone wanted anything they were to ‘ask Liz’.
On the Saturday Eloise and Christopher were having a joint birthday party and sleepover. About 3pm I got a call from David asking where I had ordered the bouncy castle. I couldn’t remember. Anyway, it hadn’t turned up. Half an hour later I got another call telling me our gas BBQ would not work. Fortunately, David managed to borrow a small one from a neighbour, which meant the food had to be partially cooked in a frying pan in the kitchen before being transferred to the BBQ. My friend, my brother, his wife and a neighbour all helped out. During this time a few items were smashed or melted, but by far the worst thing was the fact that they finished off the last three bottles of my wine club wine. I wouldn’t have minded, but I always save the best ones for last (for last, read me…).
While all this was going on, I was sitting very comfortably watching TV. On Sunday I used my mobile to ring home and find out if I still had a home to go back to. One of the nurses was watching me, shaking her head and tutting. When I had finished my call, I went over to her to apologise for using a mobile on the ward. She said: “As a former nurse, you should know better”. I was about to say sorry when she repeated herself, adding “You should have used the ‘phone at the nurses station, then it wouldn’t have cost you anything.”
Monday was the day of the ward round. Dr Ahmed, my consultant, told me I could go home the following day after my treatment had finished. Dr Ming (my neurologist) had a chat with me and then the cuddly Dr Nandakuma came and told me I could go home on Wednesday. I told him what Dr Armed had said, but was told they were saving the bed for someone who had been waiting to be admitted for quite a while. I then explained my cunning plan! I would leave the bed a bit ruffled up and put a magazine on the pillow. Then all he would need to do was put Wednesday’s date on the discharge form. Yet again he replied “Oh all right then” (I wonder if he gives in so easily to his wife?).
I have digressed from the object of the exercise, which was to tell you of my experience of having IVIg. The product I was given was called Octagam. I was given 0.4g per kilo, per day for five days. This consisted of two bottles each day, given over about six hours. I am pleased to say I did not suffer any major side effects. My blood pressure is normally about 110 over 70. By the second day, I felt a bit light-headed. When my BP was checked it was 85 over 50. However, it was back to normal the following day. On the 3rd and 4th days I felt a little confused at times (nothing new, there, eh?). I am not sure if it was the treatment or being in hospital. By the next day (going home day) I was OK. I intend to keep a daily diary of how I feel until I see Dr Ming again in two months.
As promised, I have kept a diary since my course of IVIg. David picked me up from the hospital and we went out for lunch. When we arrived home I sat down and the next thing I knew I woke up about 6pm. I felt a bit spaced out. There were two non-consecutive days — the second and fourth Sundays after the treatment — when I was so stiff and in pain that I could only lay on the sofa. My back was in constant spasm. Sadly, all in all the IVIg has not had any earth-shattering effect. The only noticeable difference is that I do not have the severe lower back pain when getting out of bed in the morning. I am able to function fairly normally for the first couple of hours each day. The rest of the day is the same as pre-IVIg.
The Hull Daily Mail has published another article!!! It was dreadful. I will say no more, apart from the fact that Christopher, aged 13, could have made a better job of it.
I saw Dr Ming and he wants me to have IVIg for three days each month for five months. I went into a BUPA hospital for the treatment on the 17th. I could have gone as an out-patient each day, but as BUPA have told me they will only cover the cost of one treatment as it is a chronic condition, I decided to take full advantage of the facilities and think of it as a weekend away. Big mistake! I was so bored. I had taken in a good book, some CDs, and two cards that needed to be written and posted. The only thing I did was update my SMS address book. I could not seem to concentrate on anything.
If truth be told, those of you who know me know I can talk for England. Perhaps that is what I really missed. At home, the kettle is always on, as everyone I know seems to use it as their second home. The kids have their friends around, so when our evening meal is ready, I usually shout up the stairs “If your name is not Blows, it’s time to go home”. At weekends and evenings I count how many pairs of trainers are in the hall (that way I know if they have all gone).
Anyway, as usual I am digressing. The immunoglobulin I received on this occasion was Vigam. As I write, it is September 30 and I am stiffer and unsteady than I was before the infusion. I have decided to up the diazepam and Baclofen. What do I have to lose? This means I am now taking 7.5mg of diazepam, 15mg Baclofen and 300mg Gabapentin in the morning, with 5mg diazepam, 10mg Baclofen, 300mg Gabapentin at lunchtime and 5mg diazepam, 10mg Baclofen, 300 mg Gabapentin at 7pm (ish) plus 7.5mg diazepam and 15mg Baclofen at bedtime. One of the things I’m not happy about is my short-term memory loss — and why. I’ve heard that someone else taking a statin (cholesterol lowering drug) suffered from the same thing and, putting two and two together, I’m wondering if there is a connection. Diabetics are now routinely given statins so it would be interesting to hear if anyone else is encountering the same thing (if you can remember…).
Another member, Angela, told her story to Woman magazine. I remember the first interview I gave. I was terrified. I really admire members who are willing to tell their story, particularly when their health and anxiety levels are worse than mine. Every time someone has the courage to do this, it is raising more awareness about SMS.
I went into Hull Royal Infirmary’s day unit for IvIg. In truth, I don’t feel it is doing a great deal of good. Having said that, it is difficult to know if it is the IVIg or the fact that I increased my diazepam and Baclofen last month. Armed with the increase in medication and three days’ worth of immunoglobulin, we flew off on a much-needed two-week holiday to Florida.
I must deviate here for a moment to tell you about the wheelchair saga. I ordered it in June and was told delivery would take about six weeks as it was made in, and had to be transported from, Switzerland. The six weeks came, but the wheelchair did not. I rang the company and was told it was on its way (does anyone believe that line any more?). Two weeks later I was told something about the ferry company being on strike. Anyway, after numerous calls, and taking a different approach with them each time, I finally rang and ‘tearfully’ said: “We are going to have to cancel our holiday if I don’t get my wheelchair within the next two weeks”. Naturally, they knew nothing of my years in amateur dramatics (let’s face it, girls, we can pull that kind of stunt with relative ease). Naturally, it worked as my wheelchair arrived the next week and I had plenty of time to get used to it before we went away. Nice one Liz — even though I say it myself.
So, back to Florida. The temperature was a constant 80ish. I was in my element as my SMS did not like the climate and decided it was fighting a losing battle and would have to wait until I got back to England before it could even think about trying to get out of jail. I walked alone each morning from our apartment to get a coffee from the resort’s restaurant, pushing my wheelchair. I went on white-knuckle rides (did you notice the plural?). Walked for what seemed like a marathon, pushing the wheelchair around the theme parks. Swam with dolphins. I even sang at a karaoke bar and, surprisingly, did not get thrown out. Ab Fab, I felt so ‘normal’.
Of course, two weeks cannot go by without anything going wrong. The first incident was when Eloise and I went snorkelling. We entered the water, which was about calf height. As we ventured further, of course, it got deeper, but I was OK with that. When I put my mouth under the water it felt strange, as one has to breathe through the mouth, rather than the nose. I got used to that quite quickly. The next step was to put my head under water. I felt a little apprehensive, but I managed it. I’ve cracked it I thought — big mistake! I swam along until I saw a big underwater drop. What went through my head? Did I think I would fall down it? The next thing I knew was I was (excuse the pun) flapping about like a fish out of water. My snorkel had come out of my mouth; I pulled my goggles half way up — letting the water in — and was in a complete panic. I could see someone’s arm, and just splashed about until I could reach it.
Fortunately, there was a lifeguard at hand. However I was in such a state I could not speak (a first for me!). Eloise was by my side all along, but I was so out of it I had not realised. Anyway, she managed to explain, and the lifeguard told her to go and get me a life jacket. She duly arrived back with one, but she did not realise that they came in different sizes and had got me one that would have fitted Ten-Ton Tess! I put it on and assumed I would now be safe — another mistake. As soon as we got to the deeper parts, I lifted up my head, only to find the jacket had more air in it than I did, and all that I could do was to turn onto my back. To end this story as quickly as possible, Eloise got me the right jacket and from then on, we had a great time.
The next incident was at Cocoa Beach. Both the kids had body-boards and were having lots of fun in the waves. So I thought anything they can do…and I went in the sea with them. The next bit of information is not to be told to, or discussed, with anyone else (or I will have to kill you). I wear dentures. I should have glued them in that day, however Eloise took my hand and led me to the water. We struggled a bit with the board at first, but then I thought the next wave is mine, only the next wave came before I was ready, and it hit me like a biggish wave would hit anyone. I was knocked over, but all I could think about was, what if my teeth fall out? So I kept my mouth closed and panicked without a sound.
Just in case you are wondering, no, I did not go in the water again! Anyway, if anything else untoward happened it can’t have been very important, as I can’t remember. Despite the two, at the time, life-threatening incidents, I am considering leaving David, the kids, the dog, the tortoise, the tropical fish and the fish outside in the pond, and emigrating to Florida. On second thoughts, who would run the support group and charity if I were to go? Oh well, I suppose I had better stay here then…
Arrived back in the UK. Joy, oh joy! Rain, cold and thoroughly miserable. The only good thing is that at the end of the day, no matter how wonderful it is to go away, it is comforting to be back home. Anyway, I think I have rattled on for far too long about Florida, so I’ll get back to the real world.
IVIg time has come around again. I can’t really see any significant improvement in my SMS. Throughout the month I have gradually reduced my medication back to what I was taking back in September. I am keeping the heating on all the time and making sure I have plenty of warm clothes on when I go out. I am doing this in the hope that the extra warmth will have the same effect as it did when on holiday. Sadly it is not working. I think the cold and damp manage to make their way in, whatever I do.
Another member, Chris, has had his story published in the York Evening Press. Yet again, another moving story.
I am getting stiffer and having more spasms in my lower back. As if that is not bad enough, I am wearing out the knees on my trousers, as I seem to be spending so much time getting from A to B by crawling. My dog knows I love him, but when I am on my knees he seems to think I am doing it because I want to play, and he prances around me, which makes my back spasm even more. I’ve told him I will have him put down if he continues, but he takes no notice.
There have been a few minor incidents because of the stiffness, including not being able to stand to cook. The anxiety problems are back with a vengeance, which is distressing. The stiffness and spasms are still getting worse, so I have put my medication back up to the dosage I was taking in September. It took about a week before the effects kicked in, but I am feeling much better. Of course, I have had my IVIg, but it still does not seem to be working, although having said that, I don’t seem to be hitting the vodka as often as I used to (hmmm…?)
Christmas came and went without too many problems. I enjoyed New Year’s Eve, apart from the usual embarrassing things I am told I have done when under the influence of alcohol (as if!). We went to a party at one of my brother’s. It is customary for everyone in the area to gather around the avenue fountain at midnight and drink in the New Year while watching the fireworks. I had drunk it in hours before, but still managed to do it again with everyone else at the appropriate time. So, with a drink in one hand and walker in the other I managed to get lost in the crowd. It was only when a police car, with sirens screeching arrived that David realised I was not standing next to him and came to find me. I am guessing he thought/ hoped they had come for me. Anyway, despite being a disabled dwarf (the name my family and friends call me) I managed a reasonable number of New Year kisses.
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.