|photo courtesy of Les Anderson|
|photo courtesy of Les Anderson|
I’ve just finished reading One In a Million by Jaqui Atkinson
I read it in two days, it was really difficult to put down.
Here is the ‘blurb’
Imagine all of your muscles going into spasm, and being unable to move a single part of your body. Imagine being in excruciating pain. Then imagine how it feels when the doctors tell you they don’t know what’s wrong. And they don’t even believe you… It took six years before Jacqui Atkinson was diagnosed with Stiff Person Syndrome, a very rare neurological disorder which affects just one in a million people. This is a remarkable story of courage, of faith, and most of all a story of love. This is Jacqui’s story. She is one in a million.
I too am One in a Million.
I’m not as bad as Jacqui, she has a very bad case of Jerking Stiff Person Syndrome with PERM.
I do have PERM though so I know that my condition will get worse.
PERM – progressive encephamyelitis with rigidity and myeclonus
It was fascinating reading someone else’s story, scary at times, emotional at others. In the end though I felt uplifted. This lovely woman has been through so much but still holds on to life and appreciates every day. She also has a very loving and caring family, despite their own difficulties at times.
I can relate to a lot, I too have painful spasms, but mostly in my legs and lower back. Only recently have I been getting them in my arms hands and upper torso.
I can relate to her ability to sit with her feet straight out. She holds a competition with her doctor and her husband to see how long they can hold their legs up and feet in the air while sitting on a chair. Try it yourself, see how long you can do it for. When my legs spasm I can do this for up to half an hour.
I think Jacqui’s book explains a lot about Stiff Person Syndrome, how difficult it is to get a diagnosis, how people don’t believe you about the pain, how people don’t understand why you can’t move, how people think you are ‘putting it on.” I think I was lucky, although I did look back in my diary and find a page where I was obviously very upset after visiting my GP as I’d been experiencing pain for quite a while and he didn’t believe me. In fact he referred me to a mental health centre. Yes, he thought it was all in my head. However, when I went into hospital and had a paralysing attack right in front of them they did give me thorough testing and keep me in for a couple of weeks until I could walk a little again. I was given a diagnosis of Transverse Myelitis which actually fitted what I was experiencing. It was a year later and after further testing (EMG, NCS and bloods) that I was diagnosed with Stiff Person Syndrome. Most people have to wait a lot longer for a diagnosis.
I related so much to Jacqui’s first story of how she felt when she came home from hospital the first time. It’s such an emotional period which people don’t really understand.
Jacqui has been through a whole range of treatment and finally, after 15 years, she is living her life much better with pain management that suits her and keeps her most severe attacks from happening so frequently. It was really interesting for me to read about the treatments and their affects on her. I know I will face many of these treatments myself at some time. If the money is available and my consultant is understanding. I really hope I can find a treatment that improves my quality of life sooner rather than later. I know there is no cure but I long for days that are free of pain and my being able to walk again, even if it is only between treatments.
I managed to get through to my consultants secretary this week with the help of the hospital’s patient liaison team. I got my appointment brought forward by a month, so now I only have a month to wait rather than two. Thanks to reading Jacqui’s book I have some questions to ask about treatments. I really want to try IVIG again, but it didn’t really make that much improvement apart from give me a little more energy and releasing a little of the stiffness. I do think that with more treatments I might get more relief from my condition, but I’ve accepted that it’s not the miracle I was hoping for before I had my first treatment. I know that’s the reason I got so low afterwards, I’d built myself up thinking that I’d be able to walk again afterwards but it didn’t happen.
Now, I will face whatever there is to come. There are some fantastic treatments out there, I just need to find the one that suits me best.
If you would like to know more about Stiff Person Syndrome then please visit The Tin Man.
Or please take a look at Jacqui’s book on Amazon.
As you may know if you’ve read my blog before I am a disabled mother. I was diagnosed with Transverse Myelitis on Jan 1st 2016 but my consultant changed that diagnosis just a year later after some tests showed that I have Stiff Person Syndrome. I wanted to record the start of my journey here on my blog, mainly for myself, but also so I can let people know why I am the way I am. This post is very detailed and probably not much interest to anyone else, so please forgive my self indulgence. If, however, you would like to know more about what is wrong with me then please read ahead.
Another treatment is Diazapam, a sedative used for anxiety, but it is also good for relaxing muscles. I think I may already be too far gone for this drug, but it may be used in the future.
Other treatments involve chemotherapy and Plasma Exchange, but these will hopefully far in the future if I need them.
For extra pain relief when required;
(n.b. I choose which of these I require, I don’t take them all at once)