🎙️ Voice is AI-generated. Inconsistencies may occur.
I was in my office at home when I saw the news that Celine Dion has been diagnosed with Stiff Person Syndrome (SPS). I was surprised, but perhaps not as much as some people would have been.
I first started experiencing symptoms of SPS in 1990. At the time, my leg wouldn't go where I wanted it to and so I had a terrible fear of crossing the road. I'm a former nurse, so I knew there was something wrong, but I didn't know what.
I was going to the doctors in my home in Beverley in north England every week for years, but it was only on a visit in 1997 that my doctor noticed my left leg jump. I remember saying, "You did see that didn't you?!" And he had. So he sent me to a diabetes clinic, because I've been diabetic since I was 31.
At the clinic, I was told my symptoms were not diabetes related, and that what I had was neurological. So, I saw a neurologist privately because my husband was working at that time and we had private healthcare. The neurologist examined me and said that I looked as if I was suffering from a condition called Stiff Man Syndrome, as it was sometimes called then. But he told me not to worry, because it was far too rare and he'd never seen a case.
I was then in hospital for just over a week in August or September that year having all sorts of tests to rule out other conditions like multiple sclerosis. Then, of course, I did get a diagnosis of SPS.
What is Stiff Person Syndrome?
SPS is an autoimmune condition that affects about one in a million people. No two people with SPS are the same, and I consider myself to be a lot luckier than some people, because there are different variants of the syndrome, I have the classic form rather than a variant. But SPS is hard to diagnose, like it was with me.
People with it will have difficulty in dealing with tasks like crossing roads, and will experience muscle stiffness, which can make people look either like a statue or, conversely, drunk. That's why going out is difficult. Most sufferers of SPS have other autoimmune diseases and can experience anxiety and agoraphobia.
After my diagnosis, my husband and I went back to my neurologist and asked what would happen to me. He said that I would continue to have more spasms until I was bedridden all the time. So that's when my husband and I went to the library. Everything we looked at said that the drug diazepam was the first line of treatment, so I went back to the neurologist and said I wanted to try it.
At that point I couldn't bend down to put my socks or shoes on. Then I started taking diazepam in October 1997, and by Christmas that year I was able to shop, cook and wash up for nine people.
Living with Stiff Person Syndrome
My symptoms have changed over time, for instance if I am going out anywhere I suffer with anxiety. It's not about being in an unfamiliar environment, it's simply anxiety. I also find that any descent is not easy. Some people with SPS go down stairs on their bottoms because it's so difficult.
I tend to spend most of my day at home, and you can tell where I've been in the house because I have to hold on to things to get around.
Recently I went shopping and my husband had to go to the dentist. I had to get to the hairdressers but it was a little bit icy. Ice is awful. You may slip and it's scary. I still have the fear of crossing roads. If I'm in a wheelchair, or on my mobility scooter, then that's okay, but people sometimes walk with me because I cannot cross roads on my own.
I also still have the fear of coming down stairs. A few years ago I got stuck at the top of my stairs; I just couldn't move, my muscles had seized up. I was there for an hour, with nobody else in the house. It was terrifying.
Helping others with SPS and advice for Celine Dion
I'm 70 now and I still take diazepam. Fortunately, I don't have spasms at the moment. That's great. Now, I like to think that I can help others. I run the Stiff Person Syndrome UK and Ireland Support Group and Charity and personally, I feel that another person with SPS can really be helpful to those with the condition because they know what it's like.
On a visit to a person with SPS in hospital she was spasming and I just lay my arms on her. I'm not Mother Teresa but I was able to help her just relax a bit. The woman in the next bed asked when I was coming again. She said it was the first time this woman with SPS had not been screaming in pain.
But I wouldn't give Celine Dion any advice. I think she will be getting enough already.
I was supposed to be having a Zoom call with her recently through a TV station, but that was canceled. Perhaps it would be good for her to speak to me though, so I could listen to what she is going through as someone who has SPS as well.
Looking ahead, I hope there will be somebody who can take over my support group when I die. But I don't think about the future much, it's easier that way.
Liz Blows lives in Beverley, Yorkshire and runs the Stiff Person Syndrome UK and Ireland Support Group and Charity.
All views expressed in this article are the author's own.
As told to Jenny Haward
