The following is from a study was published in The Journal of Stereotactic and Functional Neurosurgery:
“About 11-15% of patients with Friedreich’s Ataxia experience painful muscle spasms or muscle contractions, but little is known about the underlying processes that cause this complication.”
With Friedreich’s Ataxia, the spasms and other irritants, has driven me to become innovative with the methods employed to alleviate the pain of these involuntarily movements. This has become the cornerstone of my life. The spasms, I am guessing, are mainly a function of a lack of circulation. So for me, it is a priority to try and keep the affected parts of the body as warm as possible.
Because Friedreich’s Ataxia is progressive in nature, the limbs that have previously been used, are currently under-utilised or, to use another metaphor, lying fallow. And so, the agitation created through the lack of circulation becomes a pernicious and painful creator of the spasms.
For example, today I perform rigorous exercise routines — this is not just for my fitness, but mainly to keep myself warm. Especially now, as it is a particularly cold winter. Last week, provoked by the wintry conditions, I bought for myself a couple of pairs of leg warmers. These are a fantastic addition to my wardrobe and assist me in challenging the spasms to some extent. A part of my study time is dedicated to researching ways in which I can alleviate the symptoms of my condition. I have found that one way I can help with my circulation, is to take vitamins regularly.
These spasms are very painful and presently can last up to two days in my legs and feet, which on many occasions have led to sleepless nights. They’ve become an extra burden of managing my disability.
Baclofen is believed to be the cure for spasms in Friedreich’s Ataxia patients. But from personal experience, I believe that it actually depletes brain function. It should be said, also, that Baclofen severely impairs my cognitive capacity for my ongoing intellectual activity.
My intellectual activity is my main reason for persisting in this somewhat reduced state. And I am still alive. So I will fight tooth and nail to resist this medicinal aid.
In the year 2000 a medical neurologist told me that an intrathecal pump existed as another solution for the spasms. Wikipedia tells us that such a pump:
…is a medical device used to deliver medications via an intrathecal catheter directly into the (intrathecal) space between the spinal cord and the protective sheath surrounding the spinal cord.
This medico suggested to me that the spinal infusion of baclofen would have limited effects on my intellectual ability. But, I never followed that up because, at the time I was much younger and at that stage the spasms were only annoying, not very painful like they are today.
So here again is a difficult issue that I must face. Do I undergo a procedure to reduce spasms, which in turn could potentially reduce my cognitive capacity? I’m not convinced yet that this is the only option that I have, and so I’m committed to continuing my investigations into this condition.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
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Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer. My gratitude also extends to my phenomenal team of academic support workers. Firstly, Christina Irugalbandara whose work means so much to me. Daniella De Bruin whose brilliant and caring nature means so much to me. Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least Mercy Ndegwa who’s continually teaching me how to be a better person.