Many greetings from Biskirchen from the Gertrudisklinik! I have been here since Monday and will stay for three weeks in total.So over the holidays, but because I’m not necessarily the Christmas person, that’s OK – besides, it is here rich and elaborately decorated for Christmas. But it will be nice and quiet over the holidays, many are already leaving, and many of the staff are going on vacation.

That I am here right now was not intended. I couldn’t come here because of my trial, because you are not allowed to change your medication during the trial, and that wouldn’t make sense here. Unfortunately, my trial was fruitless, so I ended it a bit early and that’s why I’m here now.

So here it is nice and countryside, if there would be snow, it would be a winter wonderland. The doctors and staff are very courteous, attentive, helpful and competent. I am currently the only MSA patient here and probably also the youngest patient, the rest are Parkinson’s patients here, average age rather over seventy, many accompanied by partners. I am already used to being alone. At least I have made some nice acquaintances in the meantime. The food is excellent (that being said of me means a lot!), the rooms are large and spacious.

I often compare this with the rehab two years ago. I really notice now how much worse I have become. At home, in the everyday routine, it goes under. Two years ago I still went there alone by train (from Munich to Konstanz at Lake Bodensee), that would be impossible now. In the meantime, I can’t take a step without a rollator. The last year has certainly contributed to the condition, in this residential group, where one could not leave the house practically alone. I walk much more here than at home. Going from one treatment to another or to the restaurant. Quite long distances here, easily 200 meters in one direction, which is already a big challenge for me. One area is also a bit sloped, which is the horror for me. A healthy person would not notice that at all. I was offered, a helper can push me from A to B in a wheelchair, but I prefer to do without. I could also take my meals in a room, I prefer to torture myself in the restaurant, there I have to make more effort to behave adequately, not to break anything, not to spill and to pour my water into the glass and not beside it. I hope the suffering brings something, let yourself go, is certainly not beneficial. Two years ago I was allowed to work out on the machines and use the swimming pool without supervision, now all that is no longer possible. On the way I am eloquently passed by people who are 20 years older than me. When we slurp out from group gymnastics, it looks like the zombie apocalypse….

But the point is that after three weeks here I feel better than before. My goal is to remain mobile for as long as possible and to be resilient a little better. Medications are being tried now. Until now I have refused to take anything, but my suffering pressure is now too great. Levodopa test was made three years ago, at that time without result, however, at that time my symptoms were still quite mild. Maybe it was not noticeable? Now I am going to try it again, I am being given a high dosage, but I don’t notice anything yet. Let’s hope that it brings something. Other patients here are all satisfied and with everyone it has brought something.

The movement here is already worth something.

Merry Christmas and a Happy New Year to you all.

Emergency room

The day before yesterday was the day. First time in the emergency room. Urinary retention. I guess it was a coincidence that I saw urologist about two weeks ago and we figured out self-catheterization. The urologist thinks it’s also a good way to postpone a permanent catheter, because he says, after about two years of catheter, it goes off with the inflammation. Only if work out the whole thing. He even knew multi systems atrophy! And the other doctor I went to after the ER even admitted to never having heard of it and asked questions – which makes him sympathetic.

The rep/nurse was also at my house, she showed me the procedure – if I had known that is the fate of my sexual organ… – and brought a bunch of samples. I can choose what suits me best.

At the first attempts I probably did something wrong, I was impatient and took the thing probably too fast with zero success (so I got rid of no milliliter). And I probably rammed the thing into me a little too brutally, there was always a little blood to be seen when removing the catheter.

Besides, the procedure is not too bad. It takes some getting used to, yes. But if I started brushing my teeth at 50, it would also take some getting used to. To push something in itself is strange at first. Unaccustomed. And all this hygienic effort at the beginning is annoying. The whole thing has to become a habit and routine. At least the whole thing doesn’t hurt. I do something wrong and hurt the urethra every time, but not even that hurts. I was only afraid of an inflammation, and because I had given up too quickly without success, I let the whole thing go. And that was the mistake…

On the said day it started with the fact that I hardly got rid of anything. But we already know this powerless and dropwise. I drank as always, it is important, and my bladder has grown and grown with time. Late in the afternoon the pain started, I could only sit down in pain. I then found the whole thing no longer funny. Besides, I also thought I had an inflammation, and I’m scared as hell of sepsis. You hear too often that patients die of sepsis, that starts as a urinary tract infection or pneumonia.

At some point it became unbearable and my AWO caregiver (to whom I am very grateful) drove me to the hospital. The doctor there could not even write multi system atrophy.  First they wanted to keep me, then they didn’t. So they put in accesses, that means they poked me around for nothing and then took it all away again.

But the urethral catheter then brought salvation, spontaneously I got rid of 1200 ml, later more.

The next day I went back to the urologist. If I had not insisted on self-catheterization, he would have placed an indwelling catheter. I’d rather put it off. But what’s for sure, if I didn’t do that now, I’d be back in the ER because the real problem, urinary retention is still there. Now I’m a little more patient, I also don’t have that eternal urge now.

What I learned from all of those? When you’re in distress, you’re pretty scared and it becomes clear how much you depend on others. That the staff in the emergency room has no idea and is also difficult to teach. For example, they measured my blood pressure while I was lying down, which doesn’t really mean anything. That’s where it’s difficult with speech impediments, my caregiver protested loudly and clearly, but even that didn’t get through. I have in my wallet a description of the disease for emergency but somebody would have to read it, which nobody then do.


I wanted to tell you about my trip… First of all, I am incredibly grateful to my AWO caregiver for making this trip with me, because I couldn’t have done it alone. And second, what you see up there in the picture is my former route to work. I drove along there twice a day for 8 years. I didn’t even notice how idyllic it is back then.

Besides, even though it was exhausting and full of excitement, I can recommend it to everyone. It is simply good to get out of the usual rut. Admittedly, I often wished to be within my four walls and in my bed, but in the end I was glad. 

I tolerated the trip well, I was afraid that we would have to stop every few meters because of my overactive bladder, but was not so, neither towards nor on the way back. Okay, I admit, as far as drinking is concerned, I rather held back. What can be helpful in the case, however, is a Euro key with which you can unlock any disabled toilet, for 23 euros is to have, requires a severely disabled ID.

We stayed in Bavaria just before the border, in a hotel that looks better in photos than live (funny, I know this from somewhere else…), but the bed was clean and we got breakfast.

The trip to Innsbruck was a bit exciting. We were a little late, traffic was heavy, but the way was beautiful. In Innsbruck, everything was a little different, Corona-conditioned was a little rebuilt and so the terrain was a little harder to get around. Parking was a bit adventurous.

So first I was a little disappointed because the professor himself was not there. I had been there too often for that, obviously. As a replacement, there was another well-known doctor from his team – and 3 young doctors, one of whom even could not speak German….- The doctor was there 2 years ago, when I was there for the first time and could remember me! All in all she is more satisfied with me than I am, but I wonder if she says that to everyone?

There were a lot of questions asked and a lot of examinations made. For me it was a little overkill, in a short time you are confronted with a lot of things that you can not do.

In any case I am not smarter, my questions were answered diplomatically, which I understand. Nobody can look into the future or make decisions for me. Yes, the course can increase in speed or slow down or even stop. So every new day remains a surprise for me.

The question, I want to go without Biohaven because of Modag can understand it, however, she cannot take the decision from me.

She also understands that I want to test for SCA 3. At the same time, she also recommends testing for SCA 17. Although my symptoms already look like MSA to her.

Innsbruck, München, Walchensee, Chiemsee, Ammersee

As I said, I’m no wiser now, but it’s good to talk to doctors for whom I’m not “terra incognita”. Like my health insurance, which has just rejected the permanent prescription, my condition is not on their list, that means my disease is not so bad….

Apart from the doctor’s visit, it was nice to see old friends and familiar areas. Any sentimentality I repress now. Seeing people and places from a time when I still had a life really hits one.

Go back to the beginning…

Go back to the beginning…

…go there immediately. Do not pass go, do not draw 4000 Euro!

I filled up like this or something like that on 12.08 when I was lying in my bed on the periphery and could not even wash my face, let alone bring a spoon to my mouth.
How did this happen? Let’s go back a few more days. The great heat was hard on almost everyone, but neurologically ill patients a bit more.
I simply did not manage to drink as much as I should have. Especially since every trip to the toilet was exhausting and accompanied by a certain tendency to collapse, which I more or less lived out. You quickly reach the negative range with your fluid balance. The ventilators did what they could, but it wasn’t enough: Until Tuesday, my body temperature was at 40.7°C and I was unstable in everything I did. Even the Alaska Boys did not bring any cooling down but only stomach ache. I only lived on my tablets.

The question of all questions hovered over me and Marga asked them on Tuesday morning. How long would this go on? Because of the study, I wanted to delay a stay in hospital as long as possible. They don’t like Biohaven and I was afraid I would be thrown out. Since the study is something like therapy for me.

My family doctor then took up the reins and registered me in the outpatient clinic. Marga called the ambulance and one hour later I was lying in the ambulance with a liter of Jono1/1 and 1gr of paracetamol. Blood was taken. Blood cultures, a blood gas analysis was made, whereupon there was 3 l O2. And of course I was crossed off Covid-19 and MRSA. It is not nice, you get the feeling that they want to get through the nose to your brain.  Vital signs were also measured.
I was grateful for the permanent catherter. I would never have thought it possible that I would write this. But it was.
Dr.H. tried with a lot of patience to take a medical history and to find out how I had maneuvered myself into this situation. I could not get two words out clearly. My mind was working fine, only the language thing didn’t work out. That was a bit desperate.
The DZNE in Bonn did a great job. They sent me a list via WhatsApp with the medications that I shouldn’t get if possible.

I should still be x-rayed. And I can only say that it’s really not nice when you get wishes for recovery, encouragement, etc. and can’t answer.
At some point I lay in my room with a temperature of 39.5 degrees Celsius, drank the “good” Renser without end and was afraid to sleep. Like other MSA patients I sleep loudly and was promptly woken up by the night watch because my fellow patients were afraid I would mutate into a vampire or werewolf. After that I could not sleep anymore.

In the morning I was at 38,7° and not able to wash or have breakfast. I was infinitely grateful every time I saw Alex and Jessi standing in the doorway. They helped me with positioning, mobilizing and serving me food. During the day and the following night I worked myself down to a temperature of 36,5°. I did not sleep as much because of the danger of mutation.

The next morning, after the intervention, the girls gave me an air-conditioned single room on StP. Fantastic 22°C! Sr.U pronounced the magic words: “I can help you take a shower too”! I did not have appetite yet but I did not care at all. I was able to eat alone again with knife and fork! It would not have been enough for a 5* restaurant but I would have dared to go to a fast food restaurant.
In the next days I got daily physiotherapy and 2 per week speech therapy. And I decided to get an SPK, an indwelling catheter, which is placed through the abdominal wall into the bladder. The procedure is done locally and is quite fast. Somehow I felt sick for the first time while the catheter was being inserted, I can’t tell you how sick and at the mercy of my body I felt. Especially since I also fell down afterwards and visited the surgical outpatient clinic – 2 stitches had to be done.

The rest of the time I was nursed. 2 years ago I could not have imagined being cared for by colleagues. I would have had massive problems to accept the donations. Starting with all the visits, fries with mayo, drinks and muesli to help with the showers. Or the morning bread roll express (ground pork roll with croissant).  The children of the colleagues painted and made pictures. I received a lot of attention and support. The STP and my former station were just great and I was thankful that I could be there .