Today, I will describe one of the symptoms of AF – the worst one if you want my opinion! – with which I am familiar, spasticity, and I will tell you how I handle it personally. My advice will therefore not be the word of the Gospel to follow blindly, it is only my experience!!
First, it is important to say that not all forms of ataxia suffer from spasticity, this symptom is sporadic. This is, by definition, to have involuntary muscle contraction reflexes, exaggerated and often spontaneous. Especially in the lower limbs, but also higher.
For my part, I have always been a little spastic: some disabled people can complain about a loss of sensitivity in the legs but I, on the contrary, the slightest touch has always caused me uncontrolled reflexes. Obviously, this plague has worsened with the evolution of the disease, it has even spread in my arms …
Now, if I bang my little toe, all the muscles of my legs contract for a good two minutes – no kidding … – and I can also have a spontaneous spasm in the arm that supports the spoon in full meal … As AF also causes a progressive loss of muscle strength, one could expect a serious weakness of the movements … Think again: the spasms are reflexes, they use the brute force of the muscles which, it is still not bad – gym oblige!
And that is not counting on the fact that often my only desire induces the opposite reflex.
Of course, there are two or three drugs to counter this spasticity. I tried a low dose last year, baclofen I think, and he gave me such side effects that I liked better deal with my spasticity than to continue to take it! I am waiting for the next annual meeting with my neurologist to try another of these muscle relaxant pills. In addition, I know it is possible to get botox injections to relax my muscles. These injections, however, lasted three months …
And, no matter how much I hate this spasticity, I need it. If I am still able to make some transfers alone – on the toilet among others – it is precisely because my legs are so stiff, they can support me! I can not completely get rid of this symptom, only mitigate it and use it to my advantage. Therefore, oral treatment interests me more than injections: if it does not fit, just stop taking it – there’s no silly!
While waiting to find the right medication and the right dos e, I learned to live with this spasticity. I develop tricks. I have to take some deep breaths a couple of times to relax my muscles to move my legs more easily or to do stretching exercises every night before bedtime. Recently, I have also small night orthoses for my hands, whose muscles contract continuously to tighten in fist, which helps me greatly to keep a minimum of control on my fingers.
In this perspective of relaxation, I read the book of an ataxic comrade – Julie Lemieux-Budimlich – which is entitled ‘’Ma thérapie personnelle’’. She explains the virtues of essential oils and tea!
Okay, so I think I have written enough for today! In two weeks, I think I approach the thirst for freedom inherent in having physical limits unless there is another demand. 😉