Do what is possible

For about two weeks now lives the sports group. That’s me, and a handful of participants from our online group. We do one hour of sports every day, each as much as possible and does one good. After seven weeks, we evaluate the data and see whether it has brought any results.

The initiator of the action was a mobility study, where they rejected all of usl there. Because we are all MSA-C, and the target group of the study are MSA-P-patients. Now we’re doing our own little study, and we’ll see if it’s any use.

What can I say after two weeks?

First of all, this group feeling is good. Sometimes it’s so hard to overcome your inner weakness. If I didn’t have this group feeling, I would hole up on the couch here and there and do nothing. But I don’t want to embarrass myself in front of my fellow members, so I get up and do my stint.

For me the first days were hell, it was rather worse than better. It was also scary to actually realize how bad I had gotten. When you don’t do so much, you don’t notice how fast you degrade.

So slowly now the whole thing is making itself felt. Less pain, one is more flexible, fatigue better. What remains is the bad balance. And you still have better and worse days. Sometimes you do the whole thing with a lot of verve and a lot of strength, sometimes you have the feeling that you are a balloon that is half empty.

The whole thing also makes me realize what has become of me, of my life. Four years ago I was living life to the fullest, running 12 kilometers in an hour, doing yoga, kite surfing, EMS… and now I can barely walk a few hundred meters on a rollator. Every little step, as well as from the couch to the fridge, or at night from the bed to the toilet – everything is at risk of falling, which can mean a fracture or strain, which can affect the course of my life. What I do now and call exercise wasn’t even worth paying attention to recently, and was laughed at by me.

Before the diagnosis – 2017 on the way to EMS
After the diagnosis – 2019 running up and down stairs – where it still worked without help

The other day I saw a program on TV about cancer. And celebrities who have successfully fought against it. Cancer is also a vicious disease, no question about it. What I would be happy if I had a chance to fight. The stupid thing about this disease is that the outcome is inevitable. And you have to digest that once. This finality is so hard to accept. I would like to fight so much. But for what? For two days of life extra that I may live undignified? Is that a meaning? Anyway, I do and do as much as I can, even if I don’t necessarily know for what. Maybe this way I stay mobile and self-sufficient longer.

It’s hard to motivate myself every day. I get up in the morning, and I think “Again?”. 

I would like to be more present. We and our disease is so invisible. That someone speaks for us. Because in the meantime I can’t even speak for myself because my language is so stupid. 

Anyway, as long as I’m still here, I’ll keep going. And if the disease takes away my ability to act independently, I’ll leave voluntarily.

8 weeks of rehab – a résumé

One week ago today I had my last application of individual therapy in water – water therapy was always good, no matter if with Mrs. S. or Mrs. Sch. I will try to continue. I have made contact with the Sports Federation Cologne. They tried to give me the right courses.

I also try to use the exercises that the ladies S. and Sch. showed me for 30 minutes a day. With the “Redcord exercises” of Mrs. E. I hold myself back still a little bit, there I want to practice only still something under professional supervision.

Great, even if my speech therapist was strict. Her “Orofaszialen” and breathing exercises are suitable outstanding for showering and driving a car. Sch – ffft -sch – ffft / tt tt tt tt tt / tuut tuut, and always pay attention to open your mouth when relaxing and to say a “yeah” inside before the next word is spoken. We also sang “Seasons in the sun” and did other singing exercises. Higher notes work better than the lower ones. But I felt sorry for the people waiting in the hallway.

Another highlight for me was the art therapy. Mrs. O, who always manages to make me feel better after 30 minutes.  Mrs. O kindly named me a psychologist who also offers art therapy.

The OT with Mr. W. of his sign was also very nice. Nice conversations while we payed a game. OT I have not yet been prescribed (the fine motor skills still work well), but I think my handicrafts can confidently be regarded as OT.

What was less good: the academic side! Hmm, you have a sack full of questions and all you hear is that I have to google myself first or ask/ discuss it with your neurologist on site. And that for weeks.

The food! I always wonder why such health temples cook so badly! Everything very original in taste or watered down and why don’t they use regional products anymore? Use herbs, when there are no spices!

Hilchenbach the village itself has rather little to offer. The village centre is very beautiful: lots of half-timbered houses and cobblestones, but together not necessarily suitable for walker user. It has already been to the inspection – the brakes have been readjusted!

All in all the 8 weeks were exhausting and useful. I would also go back to Hilchenbach at any time, the therapists were simply great! The care on my ward was friendly, the room ok!

Most rehabilitation facilities have a driving service, which is not to be despised. They pick you up and take you home.

 

One step forward, two backwards

I have been diagnosed with MSA-C for half a year now and since February I have been consciously doing something about the decay. Of course it’s hard to motivate myself, because it’s like a fight against windmills. I have to do a lot of work “just so it doesn’t get much worse”. That is of course frustrating. I often think that if I had done so much while I was still healthy, I would have a perfectly trained body.  And then there are the exercises of speech therapists and OT which really cost time. But I have time now…

I intend to do my exercise program every day, plus every day something in the household, like sorting out my wardrobe or cleaning the fridge – and the day is filled with it and over. People ask me what I do all day since I stopped working. Well, maintain my beaten health. It doesn’t get boring. And since I get out of breath very quickly, everything with breaks and that takes time.

Of course there are days when I don’t feel like moving. Then I stop and stare stupidly into the television, then I need something which distracts my brain. I am in pyjamas all day long and eat ice cream (all this has been a secret until now). I think that has to happen sometime. But the next day I still feel guilty.

Whether all that is useful? To be honest, I don’t know. My neurologist is satisfied with me. She says it could be much worse. Besides, I know other patients who are about my age and stage, and they are in terribly bad condition. But I also know patients who have been struggling with MSA for years and do their exercises diligently on a daily basis and are in the same shape as I am – or hardly worse.

Of course, the decision has to be made by everyone for themselves, I think these exercises are good for me, going for a walk every day is good for me – also psychologically. I recently rode my home-bike for 30 minutes, now I won’t do that because I’m afraid that I’ll fall off.


My own gym in the living room

These things you can buy all for little money on the Internet. And you can be inspired by PT and ask your trainer what exercises you could do at home. Yoga on DVD is also good (beginner mode). Many exercises can be done sitting down, even lying down.

My blood pressure is better than it was in January and the hot, painful feeling from the thigh has disappeared. I adress it to training. And I know what happens after a break of two weeks: loss of appetite, weakness, digestive problems, sleep problems, sluggishness.

Surely giving up becomes a topic later, one resigns. I don’t even want to think about it today. In any case it applies to now, which went yesterday, must go today too.

Photo: schiffner / photocase.com

Last week in rehab: Monday and a little “effzehcontent”

Today my last week in rehab started.

And promptly I was dawdling so much that I was almost too late for water gymnastics. Hennes also contacted me to announce that the new jerseys had arrived. Jerseys are always a tricky topic for football fans. And as you know, the internet reception here in SIEGERLAND Siegerland (boss: I am in Siegerland) is terrible. So neither when I pushed the corridor with too much thrust again, nor in the elevator, let alone in the swimming pool! No picture built up. I could read comments but see nothing. Going out, where you at least have 3G, didn’t work either. The OT fell victim to the visit. I hope that Mr. W has coped with the failure of the “4 wins” round! So I came out after lunch. Aha, I think, these are the jerseys of the former glorious 1.FC Cologne. Well then!

– Home jersey: white, plain, classic Uhlsport jersey
– away kit: different shades of red, quite nice
– alternative jersey: blue with cathedral, somehow funny but not so funny that I must have it

Probably it’ll be the red one, the question is who comes up with it?

Otherwise, I look forward to the season with mixed feelings. If we have 3 points after 6 days of play, I’ll count that as a success.

The Redcords at the end is really exhausting but very pleasant. As already mentioned, the therapists are super …;-)

After the last therapy of the day, you usually meet for an ice cream in the cafe or outside. On Thursday the girls’ group will be dissolved. Do may Doris home, Fr may Uschi home and Marion may Saturday out.

Aids: Curse or blessing?

Recently I read a post which said: “We delayed the wheelchair as long as possible”.
OK, first of all: everybody has to find his own way and I don’t criticize anyone else for his decision.

Yes, also for me it was a surrender before this disease when my boss visited me in the university and insisted to take the walker with me to the evening mobilization to the cocoa machine. The nurse of the station had put him to me. I appreciated him with no look. That went to me everything clearly too fast. Until my boss came and meant we take this now with us. Oh nooo, must be that? It had to be probably, she is there little talk ready!

Hardly I was dismissed and with my GP I got a prescription about speech therapy, physiotherapy and about a walker! Well, I think he can be placed anywhere. At some point I need one!

So let’s go to the sanitary house! It must be red and suitable for off-road use! My health insurance company gives 70 Euro in addition! Wow! After 39 min trial with three different models came a Dietz Walker Taima XC, color red-metallic. He got a cup holder, an umbrella (of course in red), an Effzeh bell, Effzeh stickers, a Hennes (mascot of the “effzeh”) and a lock! It has a weight of 9.1 kg and with the pneumatic tyres it is suitable for outdoor use!

Now it was placed in the hallway, always somehow in way! Until it was somehow so far again that the blood pressure was just a little over 60 – ok, he was in the right place!

During the following walks around the Geissbockheim, Alex and of course my boss insisted that the thing come along. That’s how we approached each other!

I’m still not his biggest fan but he makes it possible for me to go out alone. I am not dependent on additional help. I drive downtown, go to the stadium and meet up with friends. He makes for a better gait pattern, which of course helps me when I’m on the road without him! God knows it’s not as it used to be but it’s still possible! Only differently!

How two weeks doing nothing avenge themselves

I visited my family two weeks ago and then had an eye accident, which prevented my training program. The time with my family was exhausting anyway. I can feel it immediately when I stop excercizing, I notice that now. The regression comes from behind like a hammer.

The current state is a cycle that I have to break somewhere and somehow. I haven’t had an appetite for a few days, I couldn’t eat anything the whole day, and that happens to me too. The thought makes me sick and I push the food until it gets dark. I can’t even manage to drink my coffee after getting up. And because I don’t eat, my balance gets worse, my energy is bad, I come out of my breath and then it makes me sick. The tremor increases in my right arm. Both arms become numb.

I started yesterday, yes I can still ride 30 minutes on my homebike but much slower and my heart rate is worse than before. Afterwards I have to lie down again and raise my legs so that I don’t tip over.

Today I was also outside, going for a walk with Nordic Walking poles. I can’t stand the heat, everything is more unstable, yes I notice that it’s not as it used to be.

And tomorrow is also this concert… I have to admit, I am afraid. Fortunately I have my three girls with me and have a seat, they will save my life tomorrow.

I have to force the food tomorrow, otherwise I can’t stand it. And I hope it will still be as it was. This reduction is depressing and it shows how important it is to make an effort. I won’t give up depressed, I don’t make it that easy for the disease.

I will report whether I can get back to where I once was.

Clothes, high heels, sports equipment – everything from the time “before the diagnosis” – where to put it?

This is like the time calculation “before and after Christ” – for me there is “before and after the diagnosis”.

Before the diagnosis I possessed many fancy things. Things that I no longer need, that I can no longer use. Of course this makes me melancholic or sad. Some things are simply a rational decision.

I sold my surf equipment because it simply lost value over time. But the board I learned to ride I will not give away.

I give my totally chic retro bike – with which I had an accident last year – to my friend.

There are clothes in my closet, great party fiddles, I probably won’t wear them anymore, but I won’t give them away and I won’t sell them either. And there is a shelf (and many drawers) where my high heels are lined up, nice one pair after the other.  My shoes are my kids. I don’t tell you how many pair I have. Each pair with a special memory: the one with the bow I wore to the party, the one with the strap were the darlings of my ex, the one from Italy I wore a whole day when I was leading a photo shoot…

Besides, maybe I’will maybe still wearing these. Who knows, a lot happens in research. There are days when these objects make me sad, but I would be poorer of these great memories if I would remove them from my eyes. They remain as a sweet memory and the motivation to move my ass, because who knows, maybe there will be a medicine soon, and then I want to be in good shape. Then I rent the surf equipment and rent the bike.

Photo: willma / photocase.de

Lying in bed is easier than moving around

My life is like a never-ending carousel ride. I can only stop it if I sit down or lie down. I think it often makes me sick from this dizziness, and I think I will get used to it.

Of course it is easiest to lie down, to say rightly, I am sick after all, and not to do anything. That goes well for a few days and then the big surprise comes from behind – you can literally feel the dismantling and decay of the body…

After my diagnosis I was in shock for two or three months and did hardly anything. In February I was outside for the first time – with the walker – which was correspondingly bad. The feeling, the pitiful looks…

Then I bought the Nordic Walking poles and started going out every day. Of course it still doesn’t look perfect, but I’m outside and I’m walking on my own legs!

I imagine that the little asshole named MSA now lives in my head, from time to time a light is switched off arbitrarily, and he also wants me to do nothing, then he has it even easier. And my only possibility is not to treat him.

So I do as much as possible, go out, move, strengthen my muscles, practice balance, because I still believe in healing, and if one day there will be a medicine, I want to be in as good a form as possible.

My advice in general, never skip, PT, OT and speech therapy.

Photo: davidpereiras / photocase.de