Everyday life at home has me again and I am busy with the usual things like PT, OT, speech therapy, psychologist… First I try to get out of jet lag, last night I slept about 2 hours and I get hungry at midnight and during the day I am eat nothing. That’s why I feel so powerless.
It is a week with a lot of duties, in addition there are also private appointments like hairdresser and garage. But most of all I prepare myself for rehab, which should start next week. I have to go to „Bodensee – Konstanz“, from here a big distance, so I have to take the train. And get up very early to go to the main station, because my train leaves at about 7am. That will certainly be disgusting.
First of all, effects of my trip to Canada. I really recommend it to everyone to do something like that as long as possible. Of course not alone, without my dear cousin I would not have made it, she protected me like a lioness and read every wish from my eyes. She was more than a sister to me! The experiences are unique, it becomes even clearer that this world is very beautiful after all. And Canada is beautiful!
Of course there are also frustrating moments when I ask myself „is this the last time I will experience this?“. Or I think that something is doable and possible and then not, or with challenges. It’s anyway worth it, because I experience frustrating things at home too. Fortunately I am not so in pain or maybe not so sensitive to pain? Of course I suffer from heavy legs and the pain in my calves are already there, I just try to ignore them away. And on some days, like the days I travel, I throw in painkillers in.
Which is remarkable when I “have to“ master something, there’s a lot going on with that. For example: my flight from Vancouver arrived late and the lady from the Assistance Service in London told me that I would probably miss my connecting flight. If I want to use the Assistance Service. Because I still have to wait for it . So if I can walk, I should try, because that way I could catch the flight.
That’s what I did and marched off. I was surprised about myself, because I had to manage a considerable distance, with escalators and many people everywhere. I also had to look in all directions to find the particular gate. I think I’ve get a lot of adrenaline. It makes me understand why studies have to have a placebo group. By the way, yes, I caught the flight at the last minute…
Apropos placebo group… Many will already know about the BHV-3241 trial. I already found this trial in February and have the final date in November to know if I can take part. I hope, and hope that it will bring something. I would make it, if possible, anyone. I’ve had some new symptoms in the last few months, the speed of the downward trend is frightening. Newly added:
- in the morning my throat is slimy, I have to clear my throat and cough a lot. This goes on for 1-2 hours, sometimes longer. Allegedly the vocal chords atrophy
- Salivation. Too little during the day, too much in the evening and at night.
- I have to go to the bathroom twice on average at night. In the morning very often one after the other and it lasts long. Bowel: if I have to go, then I have to, I can hardly hold 5-10 minutes. Fortunately, no accident has happened so far and I hope it will stay like this
- I have a tendency to constipation
- Tremor in the right hand (hardly visible, and only sometimes)
- Balance is worse
- Language is worse
- Fine motor skills are worse
- Reflux
- my eyes can’t take contact lenses anymore, I’m getting eye infections all the time.
- I am very sensitive to light
- blood pressure (NOH), often get black in front of my eyes when I get up, more fluctuations like before
- my wrists and fingers hurt, especially in the early morning. So that I cannot support myself when getting up, I would – probably – break the joints otherwise
So if you are interested in this study it is still not too late.
About the Biohaven BHV-3241 trial
I’ll let you know how I’m going in the rehab. In any case bureaucratically it is already a challenge a giant exercise and a paper mountain…