I have no idea whether my condition comes from the removal/change, or from MSA. I am somehow out of rhythm, I have fears for the future, questions, concerns, I am listless, do significantly less activities then before, accordingly my symptoms are worse.
But there is good news. I was at the Marburg University Hospital last week for the Biohaven trial and I have completed the first examination (the usual neurological examination that we all know plus thousand signatures). At the end of the day Biohaven will decide for itself if they will take me. I am also very grateful to the chairmen of the PSP society that she did accompany me, I need an “escort”, she drove me there, and when I went outside I realized that without someone to hold my hand I would be lost. I became so sensitive to light that my eyes started to water and burn and suddenly I saw nothing. And if you have a walking disability anyway, sight and eyesight are elementary.
This light sensitivity was already known to me before, so I used to wear sunglasses. But now I unfortunately have to wear glasses because I get eye inflammation from contact lenses. Glasses are really stupid now.
In the meantime I have experienced that this light sensitivity and the noise sensitivity (which I also have, only until now I thought that this is a peculiarity of mine), so these two things have the same affected brain area as a reason. Whichever area of the brain this may be, it is definitely stupid. To move safely – as I have learned – the human needs balance, eyes and ankle joints (in the foot). Eyes and balance will fall away from me (being outside), thenI am really handicapped. Sensitivity to noise starts after getting up, it affects normal sounds and it slowly swings up, causing my tinnitus in the ear to get louder and louder (otherwise it is always there with a basic level, or sometimes it disappears) until it really hurts. And there I am talking about usual noises, not about the chainsaw or the flight path.
So the much longed for Biohaven (BHV-3241, M-Star, Verdiperstat or formerly AZD3241) is approaching. It’s time, slowly it’s almost too late. When I think that I have found this trial for more than a year already… Now I have to be suitable, not fall into the placebo group and the whole thing should ideally have an effect. My plan B is the study of Biogen (I found out about their existence by chance), which should start in July. In Germany it will only take place in Marburg and Düsseldorf. The doctor has described it as “interesting and promising”. What I find strange, however, is that this is a Phase I. trial will be in MSA patients and usually the phase I. will be tested in healthy volunteers. According to the doctor, one also have to be a bit adventurous, because it is not a drug to swallow, but one get an injection into the spinal cord. When I was diagnosed I had a lumbar puncture, I didn’t think it was that bad – many people are really afraid of it.
So, these are the plans, let’s see what happens. Slowly I think a drug that slows down or delays the progress of the disease is not interesting for me anyway (in the meantime). In the last months I also became aware how fast changes happen. And how they limit me. And it is still the beginning. So slowly and in small steps this illness takes everything away from me.
Everything I can do, fight and hope – because there is still a little light at the end of the tunnel. I don’t have any other option, giving up is not an option.
PS. By the way, in a few days, a week’s holiday at the sea is announced. I’m looking forward to it, even if it will be different than before…