Third week in isolation. There I praise my social incontinence, but slowly the roof falls on my head. But that has only partly to do with this virus, it has mainly to do with MSA. For an independent person like me, it is difficult to think about every step. Just getting into the car and spontaneously driving to the lake, like in the past, is no longer possible.
The highest thing is to go into the forest and do my rounds in the fresh air, with Nordic Walking poles, which is getting more and more difficult now. Firstly, because of this stupid virus, half the city is now where nobody was before, people are now walking their dogs and children. I couldn’t care less, but they’ll think, “How can you be drunk on a Tuesday at noon?” Recently things have been pretty straightforward, it’s not like that anymore. Walking straight out and looking to the side doesn’t work at all anymore, I try to look straight out and not to look at my feet and toavoid the typical MSA neck.
And there we have it – driving. In February I was in the hospital, in the ambulance for movement disorders, and since then I have this in my file. I am medically advised against driving.
It has to be swallowed first.
And that I, who drove 1000 km 3-4 times a year – visiting my family in Hungary – and nobody passed me on the motorway. I have gotten a lot of parking tickets for speeding. I drove 100 km to work every day. And now? It’s depressing. First downgrading from my BMW to a Smart and then this.
Of course I can keep driving, but if anything happened now, the insurance would be in on it.
I stopped driving on the motorway and longer distances a year ago because I realised that I was having difficulties. I have no problems with my eyes, not with my reflexes. I have problems with turns (especially turning right). I drive 90% with my left hand, because I feel safer with it. And I have problems with estimating the distances sideways at high speeds – that’s why I don’t ride faster than 100 kmh. And these things are based only on my own feeling, I don’t want to endanger myself, and above all others, and that’s why I don’t do that. And now I’m not even supposed to go to speech therapy, the forest or the supermarket in the village – if I’m allowed to go out at all and if I can walk at all.
Of course the question arises for me, what makes sense. Unfortunately, this illness is not such that you can say that in general when is it dangerous to drive. I know many other MSA-P patients who have no problems with it at all. However, I also know other MSA-C patients (like me) who drive after years with confidence. It was one of my first symptoms, I am also more affected by Ataxia. However, I still feel safer when driving a car than I do when taking the bus or subway. Although I understand the limitation, I am of the opinion that with MSA patients it is not easy to say it. Prophylactically, I avoid 10cm distances to others or reverse parking (which I used to be very good at) – not because I think I can’t do it – I don’t want to challenge it. I think this is a severe break into the already crumbling independence. For example, I was shown what it would mean to confuse the accelerator and the brake (because of ataxia in the legs). Firstly, I don’t notice any limitation in my legs at all – if I do notice limitations, it’s in my hands, but this hasn’t been discussed – and secondly, I bought an automatic transmission especially for this.
It is difficult to deal with this matter. I realize that, if I don’t practice it, I will soon forget it – according to the principle “use it or loose it”.
How you deal with it, is up to you. But do not endanger yourself or others. I will take an aptitude test at “ADAC” or “TÜV”, so you are on the safe side in terms of insurance. But the fact is that this miserable disease takes everything away, one by one.
And now it comes, the mark aG in the severely handicapped pass has been rejected repeatedly. Only with this number plate do I have a chance of getting a disabled parking space, which is relevant for me – if I can drive anyway, but if not then also because I cannot walk around endlessly. So what? I’m too sick to drive but too healthy for a parking permit?
Besides all these “little things” I keep on waiting for my removal and live out of boxes. I balance my everyday life around this virus. I avoid going outside, the only thing I have left is to go alone into the forest. My balance has become noticeably worse, but I mean a little bit better.
This virus makes everything more complicated and more difficult. My illness fades into the background – which is not bad, because everything else is about it… Since I have friends in Hungary, Serbia, Croatia, Spain, USA, Brazil… I get the bad news. Many people lose their livelihood, businesses go bankrupt, jobs are cancelled, rent is not paid. I had my friend from Serbia here to help me with the removal – we got her out of the country at the last second, now she is stuck in Hungary and can’t cross the border. And an apartment there costs a lot of money now. Neither forwards nor backwards. She runs out of money, but she needs to eat anyway… Besides all these frightening facts, stay healthy – there will be an “after”. For me it’s easier to say, I know I’ve been chewing on such existential issues for a while…
And I would also like to take the opportunity to thank all those who keep life going. Nurses, cashiers, logisticians, drivers, trash collectors who give us internet… Hang in there!