My new companion the Multi System Atrophy

I was inspired by Marion and I remember, what it was like for me, two years ago. Yes, it was pretty much on the exact day, I first heard about these three fateful letters. Unsuspectingly, I went to the hospital, on St. Nicholas Day two years ago, where I had been for the examination before. I was still working, driving a car, taking a vacation, having a man by my side, I had a life. I suspected that I had something, so I went to see a doctor, orthopedist, ENT, neurologist, psychologist… 

I avoided stairs – I thought I had a phobia and in general I didn’t feel like doing anything.

Then these three letters, I was told that I can’t do anything about it, At most I can slow it down, maybe. That from now on goes downhill, rapidly. I asked Mr. Google and then I was in shock for days.

That was at the beginning of December, at Christmas I couldn’t drive to Hungary to visit my family and I called my niece halfway and asked her to come and get me.

Then the madness started. What do I do now? What do I actually have to do? How do I go on? I was primarily horrified by this illness and I had existential fears. I felt the same as Marion, I wish there was someone there, who would take me by the hand and tell me what to do now.

Through my internet research, I got to know Marion quite soon and we cried our eyes out on the phone. That was the birthplace of this blog, we just wanted to offer something normal, liveable on the internet, for the newly diagnosed especially, because the internet is full of dramatic descriptions.

Then my journey started at the slide down. I had a really happy life before that, that I lost my hold, came very suddenly.

All my information comes from the internet or from Marion. Then I realized that I had to apply for a full reduction in earning capacity pension. I didn’t know what this is connected with. I made an appointment with the pension association. I had to wait for days, then millions of people there, just like at the airport. I go to a desk, say that I have an appointment. To apply for a pension – and break down in tears. I think the administrator was also overwhelmed, I think they are not used to such an outburst. I was not used to it either. I never cried before, especially not in public, so they called someone, who caressed my hand, I cancelled the appointment and went home.

I called my health insurance company and asked them in tears about the level of care. I had never heard of “MDK” before. I ordered my disabled pass (online), of course I was naive enough to hope for a disabled parking space, tax breaks and a few other benefits. I have ordered rehab.

Then I had the “MDK” in the house. Care level. I answered the questions truthfully and got  ZERO points. Disagreement, three times, the second time I got level two and the “MDK” lady (the first one was totally empathy-free) said directly that the problem is, that I live alone, because if I had a husband or partner, then I could let the man do everything for me, when you are alone, you are forced to do things yourself. So notice, it’s not about how bad you feel, it’s about how much time you take up from another person.

Then the back and forth with the severely handicapped ID. First I got 40% and no letter. Then I discovered that “VdK” exists. I hoped, that this is the association, that takes me by the hand and tells me what I have to do, but no, you have to know exactly what you want from them, they work for you, that’s it, you can’t expect miracles. A membership costs a few Euros, so not much. Only if you want something from them in the beginning, you have to pay extra. I also understand that. Back to the severely handicapped ID. It is very important to name a right doctor, neurologist etc., because they will contact him. He or she have to know you and describe your condition accordingly. The words DANGER OF FALLING are something like magic words and that everywhere. The second time 80% and B (assistance) and G (walking impaired). Yes, with these magic letters I took someone into a desired and sold out concert for 0,- Euro.

Then I wanted a parking badge to park on handicapped parking spaces. Then I found out that the Bavarians (I was still in Munich that time) don’t have the  orange cards (for easy parking). But there is a state care allowance in Bavaria and only there, 1000 Euro per year. A parking permit is only available from 80% and aG (exceptionally walking disabled) that means, both legs must be amputated. Sit in a wheelchair. Or be blind (because blind people drive cars). I was refused aG twice, but now I don’t drive anymore, so it doesn’t matter. I am tired to fight for. I would have liked to explain to someone that we atypical Parkinson patients need such a parking relief NOW, not next year, when you might not be able to drive at all. An objection procedure also takes several months. So by the time you have that, it is often too late. Well, some meaning  has it also later, if one drives around later, with company, somewhere… one cannot walk so a long distance, walker or wheelchair must be lifted from the car, to get out, one needs more place – sense makes it anyway. But now I know, why these parking lots are always empty; because until you get it, you don’t get out of bed.

Pension application. Was the most complex issue. So, no pension without rehab. The doctors in the rehab program even forecast if you have a chance to work. With MSA looks bad there. There is something like work therapy, where one makes so a kind test what things  in which time one is able to do. Just as a tip, it  not worth to make an effort. Of course I can type something on the keyboard – to see this blog entry – but how long it takes, what kind of back pain I get and how many breaks I need is another matter. So you do the rehab first, many people find it annoying, I think you have to go for it and get the best out of it. You have to show initiative and make an effort. The own body thanks! Then the ominous pension application. I found out somewhere, that once a month a pension applicant comes to every city or community, you can make an appointment with them. That will take longer, but he takes the time and has a little more time like the others on the office. At the first appointment he says what you have to collect. And that is a lot. Practically a complete resume of your life with documents. The bad news is that you have to do this work yourself, whether you go to VdK or wherever else. And there is no good news. Ah, the second bad news is, that you will be retired retroactively, from the time you applied for rehab. You don’t have to pay anything back, the pension association and the health insurance company, will take care of that. Also consider, that there is the sickness benefit for and a half years, one can go directly into the pension, which is usually smaller amount than the sickness benefit. If one does not pay attention, then one remains without everything there. One must apply then, also in time, for unemployment pay 1 or so called Harz 4, and who wants that already.

This euro key, what Marion meant, is meaningful.

While all this stuff do not forget that you have a dam… illness. So boredom if you are MSA sick, don’t come up. Besides organizing therapies, PT (Bobath), OT, speech- and psychotherapy is usually. All these therapists must be found and they must fit you. Routine should therefore come in.

I have been struggling with my occupational pension on the side. Because I am younger than the regular retirement age, they don’t want to pay me, in 12 years then – if I live that long.

I returned the leased car and bought a smaller car with automatic transmission. Technical inspection, registration, insurance included. Ah yes, insurance. You can cancel half of it anyway, because it becomes useless. Although my MSA diagnosis came years later, now if something would happen, they would always blame it on the illness. This was whispered to me by my insurance lady. I thought that now the accident insurance would pay off – in opposite. So insurance companies to check what makes sense at all now.

Ah, in the meantime a breath coach was rejected by the health insurance company, a walker was delivered, which I hated. So – with me at least – the health insurance company approves the cast-iron model “Grandma”, and if you want carbon or something else, you have to pay on top. And there is also not just any model, but the one that is distributed by the cooperation partner. An e-scooter has also been approved; if you pay a few hundred on top, the thing is yours. I have hardly ever driven it, for complicated reasons, but it makes sense in hilly areas.

Also things that burden your wallet, charity, sponsorships, memberships in an alpine club or golf club makes little sense now.

There is still one movement trainer, a Motomed, for example, and also the unspeakable aG I have to organize.

I would also like to do complex therapy. We are entitled to two times a year, 2-3 weeks. Ask the neurologist or the hospital of your choice. That is like a small rehab. You will be checked by a doctor, medications will be reviewed and all therapies and even more as usual. Some hospitals offer e.g. water therapy, relaxation therapy etc.

Do not forget the living will and brain donation. All silly topics, but when they are off the table…

So the work is not over. The shock may be gone, you may have less paperwork but still enough. You don’t get used to this state, it doesn’t get easier. But i’m glad that this first time is over.  I’m not so panicky anymore and maybe I cry silent and without tears. I know how it feels to give away 5 bags of clothes and 3 bags of high heels, to clean out the basement, being without a man, to cut off your hair and fingernails. So having MSA is a fulltime job and not cheap. So you better choose something else.

Leave a Reply

Your email address will not be published. Required fields are marked *