The simplicity of walking

It happened. I can’t gloss it over anymore, I can’t blame it on the time of the day or on the psyche, my gait has become worse. I don’t think it affects my balance, simply my legs do things they shouldn’t. And although my legs are healthy and certainly not the weakest, they feel weak and powerless. In other words, my legs do not obey me. They make movements, totally random, which makes me loose my balance. So I have to be very careful, walking on my legs is like walking on a minefield.

At night and in the morning right after getting up it is especially bad. I start running with a swing, I am glad that the wall is there to stop me. Until now I only knew this from hilly roads, snide paths when I start in one direction and I can’t stop.

The whole thing upsets me of course. Actually, I already look like a penguin that has been shot. I remember times when I used to strut around on high heels, wagging my ass – that’s finally over now. No men turn their backs on me, except out of pity.

Then I also think that even little babies learn to walk, what’s the problem? Now I am threatening to fall over while standing, closing my eyes is not allowed. 

Most of the time I pull myself together, everything works better with concentration. But then I think, walking used to be no special challenge, now I have to switch off everything else so that it works for a few steps. Not even talking and running at the same time turns out well. Either one or the other.

Of course my next thought leads to the study drug. Does this mean that I am on placebo? In other words, do I get sweets instead of the active ingredient? Looks like it, who knows. Admittedly, I don’t do much at the moment, going outside is problematic, walking on the treadmill has become more dangerous because of balance and I don’t do it every day like I used to.

The whole thing already bothers me. At least I can still go on my own to the toilet and back, everything else requires planning. If I want to go shopping in front of the door, on the terrace, or further away, maybe to the post office or the hairdresser – nothing works without planning, companionship, spontaneously. A few years ago, this was not an issue, of course, for me it is especially independent person, especially bad. On top of that I am stubborn and offended and often I don’t want anything anymore, no compromise. Instead of walking in the forest and walking over the damp forest floor and leaves, not even to the terrace, and sniff a little fresh air.

Of course there is still the hope that it can be turned around, that with more practice and more relaxation the situation will improve. At the moment I am thinking about wheelchairs but I also want to drive a car. I hope that it will get better, I will report. Because who gives up, has already lost, as is well known.

A short note on the Biohaven study (BHV 3241). In user groups the news is spreading that you can get a prescription for the drug. I wrote to Biohaven directly and wanted to know how this is handled in Europe. Not at all. The drug is only available in the USA, it is generally not shipped across the border. That means you have to travel to America and find a doctor willing to prescribe it, pay for the stuff yourself (unfortunately I didn’t find out what it costs), and I guess you have to go there more often or you get a year’s supply… Whether the stuff helps is the other question. I personally don’t feel anything, but I have heard a few positive voices. However, no reports about a miracle. Of course, patients with positive experiences keep a low profile – especially here in our country. For whatever reason. In any case, the fact is: still no medication.

As far as my running skills are concerned, I am counting on a miracle. The most important thing is not to fall badly and to stay mobile at all costs. Of course, you avoid a stick or a walker. I will never forget the first time I rode the subway with a cane. I had the feeling that everyone was staring at me. In the meantime it doesn’t matter anymore. Without it I look like a drunk anyway, so the question is what is better. With aids, people might help me up, but without them they won’t.

2 Replies to “The simplicity of walking”

  1. You are a bloody legend.
    Your honesty and candour are second to none
    I completely empathise with your curiosity continual quality improvements despite this MSA bollocks !!
    You are my sister and you rock Josh xo

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