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.

Camptocormia and what else is on my minds

Today is World Down’s Day. To draw attention to it, one should wear two different socks. Actually, I should be sitting in the Müngersdorfer Stadium with my 2 different socks to see the glorious effzeh win. Actually! Actually I am sitting in my armchair and watching forever soccer – The greatest games !

How do I get the idea. I have copied pictures from the iPhone to the hard disk. And I found 2 from some tour to Rehacare with the boss and her disabled Qui Gong group. 5 or 6 years I was allowed to accompany them and even if this day was always stressful, it was always nice and something special. So today I put on the socks for Konstantin. The only boy with Down syndrome in her group.
So many things fade into the background during these days. Understandable, no question.
My orthopedic physiotherapy practice is closed until Easter. Probably my speech therapy will follow soon and the neurological physiotherapy practice will have finished by curfew at the latest.
So my complex therapy on Helgoland is done for now.
The start of the Biohaven study will be postponed, probably until the end of the corona pandemic. Whenever that is.
Friends of mine are stuck in Brazil, so I hope to be able to leave today.
Also cancelled were the Miljötour through Veedel, Roncalli visit, zoo visits, the Photokina and of course the soccer league. So almost the whole leisure program. That would not be dramatic, but with MSA patients the clock ticks differently.
When I was diagnosed, everyone said to me: “Only do what you enjoy”.
But how? First year, I was all about the authorities. So the second year, I’m on Corona. It’s a shame you don’t get better.

Right now, I’m plagued by increasing camptocormia. It’s a rarely described symptom. In the so-called Camptocormia the torso bends forward by more than 45° as if pulled by a rubber band, only with extreme will and effort one can straighten up for a short time. Only a few develop this bad posture, which makes it almost impossible to sit, stand or walk straight for a long time. One is helplessly at the mercy of involuntary bending when walking or standing. While lying down the symptoms disappear and the spine returns to its neutral position. This impairs the quality of life and further restricts independence and motor skills. The risk of falling also increases.
After intensive googling I found a Camptokormier backpack. For this I need a prescription to start the test phase. Afterwards the doctor has to write a statement and then the health insurance will check it. Otherwise it costs about 450 Euro!
Of course there is still the physiotherapy, the corset and a forearm rollator.
I also found the deep brain stimulation, which is normally not for us MSAs. I will continue to find out more about the THS!

Stays healthy 😊🍀

The curse of a rare disease

By chance I’ve been left without a doctor. My family doctor has unfortunately passed away, my neurologist on maternity leave and my home hospital is closing the “Neurology” department. In addition to that my physiotherapist is also gone and I get a new one, recently my very dedicated speech therapist has also moved. Meanwhile I have a new one and fortunately she is also great. The rest is in the works…

What I actually want to say is that I am allowed to start from scratch everywhere and explain what I have. And the medical staff, from receptionists to doctors. Medical staff. And it’s just nerve-wracking over time. Of course, for now, everyone thinks I have Parkinson’s. In my file it says “Atypical Parkinson’s” and I wish the collective term would have a different name, because everybody looks at me and says, Parkinson’s. And I have to smartassing, it also says “atypical” and that has a meaning. No medical doctor likes to be lectured, they have studied for years, I often hear from their text that they don’t know what they have to do with. I always ask politely whether they know the disease, which is then “naturally” the case. I would bet everything that they see a MSA patient for the first time, and from what I hear in their text, they don’t know, what they deal with. But I can’t just start lecturing them – I’ve been reading about this disease for months – because I would immediately make myself very unpopular.

A doctor once wanted to comfort me, because the result says  “probable” MSA, which means from his point of view, that there is a probability that this diagnosis could be wrong. I tried to explain to him what “probable” and “possible” means, he declined, “you can’t understand, you have no medical training”. I thought I had to breathe fire.

I would be very happy to have Parkinson’s disease, and the diagnosis “probably” coud also still change, then I don’t have the plague, but cholera. Does that make that better?

This constant lecturing is very tiring. I completely understand that MSA is not known, I also have never heard of it. Doctors may have shortly mentioned it in their training. Even neurologists have never seen an MSA patient, and are overwhelmed. But that doctors are too proud to read up and admit that they don’t know what is it, it is really exhausting.

The fact that the authorities don’t know the disease is something you know the best. Everything is rejected for now, from the pension office to the health insurance company, and everyone hides behind their desks and works as prescribed. And we are running out of time.

There is talk of Parkinson’s and Multiple Sclerosis all over the media, without mentioning that there is a rare “sibling” of these diseases, called Multisystem atrophy. There are others Parkinson Plus Syndromes as well, for example PSP or CBD . A rare disease is one that affects 3 to 4 per 100,000 people. MSA is one of them.

That’s why I wish sometimes, this disease would have a prominent victim, so that it would attract attention and interest – and thus contribute to education. A famous person, in whom the general public would be interested. Such a wish is almost evil, actually I do not wish this disease on anyone. There are societies that tirelessly represent the interests of the sick, that speak for us, this is certainly a thankless and tedious work. Doing something for a handful of people, will not really make an impact. No one will become famous as a result. That is why I am so grateful to people and doctors, who have made this their task, there will be no credit for it, it must be a a true calling. 

But sometimes I wish for a prominent fellow patient. Evil, right?

When one door closes, another door opens (whether you like it or not)

It’s almost a year since I got my diagnosis, I’ll never forget that day. A year ago I had “my last unconcerned moments”.
I’m writing this now, to be a little closer to newly diagnosed patients, to provide some assistance to them and to show, that the earth is still spinning. I wished there was a place, where one step at a time would be told, what to do.

The diagnosis rolled over me like a train, turning my previous existence upside down and tearing it apart. This can, of course, be experienced differently for everyone. I live alone, my family 1000 km away, I have (intentionally) no children and no husband (I’ll do I’ve been I’ve been a time). I deal with things with myself alone, so the I did with the diagnosis also.

I have felt for a long time, that there is something wrong with me, but I blamed it all on stress, I worked a lot of overtime. But with a few tricks I cheated my way through life and I thought, one day a magic pill would come and solve everything.

I went to the neurologist, but mainly because of balance problems, I didn’t bring my other symptoms up, because I thought they were of a different origin. I had such problems on my high heels, I didn’t mind in the past, I drove with 18 cm car and I survived a beach party in sand (!) without any problems. In the office, or in the group of friends, I was known for my high shoes, and I still have many couples at home. After a year of antidepressants and a psychologist (who said I was fine) I was admitted to the hospital and a series of examinations were done – and they discovered it on MRI images.

I remember when the doctor told me, that they found something after all. That they found something was ok, I never heard of MSA before, what do we do about it now? Then the doctor told me, that we can’t do anything about it, the best we can do, slow down the development. She then roughly explained the disease, but she left out a lot of things (what a fucking task, I don’t want to tell anyone that). I immediately called my sister and cried. I sent an SMS to my work colleagues (I went to the office afterwards) that they shouldn’t address me at all, if possible.

Then I cried for two days and two nights, with no food and no sleep. I googled this thing, of course, and then I get overwhelmed. However, I tried to inform myself on serious pages, to avoid horror messages.There are such statements, like “life expectancy 6 to 10 years“, bad symptoms that can hardly anything help, wheelchair and feeding tube. 

With my boyfriend, I have broke up one day after my diagnosis – what my heart had almost torn apart – we had however, not the kind of future-planning relationship, where I would force myself on him, as a nursing case. He digest it for a long time and he often asked why. We can organize a “little wheelchair” and things like that. Unfortunately, MSA is not a disease that would be solved with that. I thought, if he wants to know more exactly, then he googles himself, I didn’t told him much, why I decided that way. I just said, that I’m not the person anymore, he fell in love with. Of course it would have worked for a while, but where do you elegantly end? Waiting until he says “I don’t want to wipe your nose” would only hurt unnecessarily. I think, it certainly plays a big role, that you don’t like your body anymore and you don’t trust your own body, you see that you can’t do certain things anymore and it won’t get any better anymore. My ex asked for a meeting for months and often asked me, how I was doing, which only made me cry, until I blocked him on my cell phone. I don’t know his reaction but I made it for him too. He knows where I live, but he would never show up without an announcement.

When this first overload was over, I was forced to take my remaining life into my hands. 

There is no time to deal with this diagnosis, there are existential things to crack down on one.

Now following things are common in Germany, I have no clue if you can use it. 

The first thing I did was to apply sick. I lost my job shortly before that (I looked into it later, and it was also on MSA’s account) and I also thought, no matter, because it was very stressful, and I wanted to find something more quiet, anyway. Whatever the case, writing off sick should be the case, because all this stress and then going to work – that’s almost impossible.

I have searched a lot on the Internet, also sought advice and connection, above all I wanted to find a patient who has defeated this disease, but unfortunately this did not happen. But I found many other things. In this way I got to know Marion and finally I didn’t feel alone. We have exchanged extensively.

I have never dealt with anything like this before and I have had no idea what to do.
My recommendation (I have gained experience):

  • Join a social association (about 5 Euro membership per month). They will represent and help you if you have to deal with different organisations. And you will.
  • Apply immediately for a disabled person’s identity card, from the day you apply for it, you will be able to take advantage of the benefits. You can also apply online, you have to google a bit. In Bavaria these are the welfare offices. Don’t get fobbed off with anything below 50% (a social association will be useful there). For example, they have only given me first 40%, which is totally over reality.
    If you speculate on a severely handicapped parking lot, you will only get it with the mark aG in the severely handicapped pass – which you will hardly get. I have a certificate from my doctor, it doesn’t help. As long as you can walk, have your eyesight and your both legs, you won’t get it, no matter how often you fall on the street and no matter how hard you suffer from incontinence.
  • Apply for a care level by your health insurance company, but be smart and prepair yourself beforehand.
    A social association can also help.
    The health insurance company sends the a person from the MDK to your home, and I believe they earn on every rejected case.
    No false ambition or pride, getting care level 1 is a big thing. For example, I got zero points at the first visit, 4 or 5 points at the second try (contradiction) (for care level 1 a little more than 10 is necessary). I could have sued on the social court afterwards, for which I simply lacked the energy. That I cannot put on support stockings without help, cannot clean windows, have difficulties in the bathroom, everything belongs there. And, she doesn’t care what tomorrow can be, she only cares what is at the moment.
    A care level means financial and/or practical help.
  • For all those who live alone: apply for home emergency call. With the Johanniter or Maltesers or something similar. If there is a risk of falling, it is a good feeling “not to be alone” and promotes mobility, because you are more confident. And, with an approved level of care, the health insurance company covers the costs.
  • Get a Euro key for disabled toilets (a disabled person’s identity card is required). With this key you can unlock the toilets all over Germany. There is also an app that shows all disabled toilets nearby. With GPS, Internet is not necessary.
    Important for all with incontinence issues! Costs for the key: 23 Euro.
  • Rehab. It’s gonna end with retirement. That’s a hard one to swallow, but that’s how it is. It makes sense to delay the rehab, there is sickness benefit one and a half years, and tis is usually more money than the pension. As long as you are on sick leave, your time will run into the pension fund. But beware, the alliance can/will provide you with a retroactive pension, i.e. at the time when you were on sick leave.
    Before you can claim your pension, you have to do a rehabilitation (in my case it’s approved 4 weeks, plus here in the rehabilitation the doctors have added another week. Marion was 8 weeks in rehab!).
    In rehab there’s something like “occupational therapy”, that’s a bit hard, because you’re shown what you can’t do. There will also be a test with the help of which the doctors can explain why you should get the rent. The association would of course send you to work. I was still working on my diagnosis (about a year ago), but in a year I have worsened so much, that it is almost impossible.
    Which I don’t (yet) know, how often you can do rehab. In my case it is difficult to say what it will do, because I also do a lot at home, but it will do something. What you can/should do is a complex therapy (as a rule you can do twice a year), which many hospitals offer and it takes 2-3 weeks (it is also called “small rehab”), the program is rather designed for Parkinson’s, but you get an individual care.
    The whole topic of rehab is a huge mountain of paper.
  • Request, if necessary psychological help. I asked my family doctor for help, there is a service that can helps (he gave me a phone number that you can call, and there recommend 3 free psychologists). But it can also take a while. If you need urgent help – which wouldn’t surprise anyone – contact your doctor.
  • Prepare yourself to educate medical staff, also doctors, but also your relatives, because this disease is very rare. 
  • Take care of your will and the future. No simple subject, your GP and the person of your trust will help you.
  • Do a lot of sports, exercise, talk a lot. Stay active and do challenging things. PT, OT and speech therapy are obligatory.

If any of you think of anything useful, you are welcome to write in the comment field. 

Now, a few months later, I see that life goes on despite everything and I continue to fight – was wondering in the first two months, why should I? So that the misery lasts longer? A lot is happening in research at the moment, who knows, maybe we will experience helping medicine. And then we want to be in good shape, don’t we? And don’t expect what’s predicted, most doctors are just poking around, and I’ve met a lot of patients who have exceeded the 10 years survival prognosis by far and are not in a wheelchair or on feeding tube.

This is also part of it

We all don’t like to talk about it, but we all die. All of us. And dying healthy is stupid, dying sick with MSA is stupid. A meteorite on my head in old age (what is old age?) would be great…

To deal with the topic, one’s own way to death, is an unpleasant topic. Some people it triggers immediate with crying attacks, stokes the throat. “That doesn’t happen yet, it’s not a topic yet, not to me, it’s totally early to talk about it.” Like my sister, who also refuses to talk to me about (my own) death. And the death will come to us all, it only meaningful to deal with it. If you don’t want to let the state dictate, what should happen to you, after death and want to cause the relatives a lot of trouble…

But it is not easy, I understand it too, I try to be pragmatic, 

Depending on whether man has spouse and children it may differ, some relatives are entitled to decide something. Someone like me, unmarried and without children, would rather write its wish down. All people should also have a will, by the way.

This whole subject has been on my back for a long time, and experience has shown that once I have done it all, the subject will be off the table.

I have been advised by my GP, he must sign the whole thing, confirm that I am in my senses, and a copy goes into my medical file. Even the whole thing can be checked and signed again every year, if I have changed my opinion in something.

He recommended that I take a copy from the “Bavarian State Ministry”, which seems to be usual here. This is a very long PDF, my family doctor recommends me to use the “Patient Decree” and the „Mandat (Authorisation)„

Of course it is shitty to deal with, who can decide what about my life, when I can’t communicate anymore. As I said, I would be very grateful about a meteorite on my head, before it comes so far.

Furthermore, should one also consider what should happen to one’s own body after death? If you want to donate your organs (does anyone want to have an MSA kidney or liver at all?), if you want to donate your brain to science for research purposes (what I recommend, future generations will be grateful, and your own karma account will be thanked – if you have something like that after death) and what should happen to the rest. Many want to be cremated, scattered in a meadow, buried at the root of a tree, or some want to be buried at sea. With guests or without, with a religious escort or without.
I also have a list of contacts with email addresses to be notified in case of need. And my accesses I still have to collect, mobile phone contract, bank access, insurances.

All in all it does not make a good mood, it often seems to me, that it is not at all about me at all. But that’s life… first we live and then we die. And I live first.

But now the rehab, I am very curious what will happen there, and to travel there will be a challenge, especially with the cold I have now. Sometimes I don’t know if it’s good or bad, that I have so much to do, there’s almost no time to think about what to expect and what a wicked disease it is. What I find terrible, is the fact, that we MSA patients no longer have a choice, some things just have to be done.

How time goes by

I haven’t had a computer for almost a month now. That is the reason for my absence. Typing on my mobile phone is a great exercise, but I couldn’t and didn’t wanted to write a whole article on it. So I read Marion’s articles diligently and dedicated myself to everyday life. But I was reminded what it was like in the beginning. 

Freshly diagnosed patients are hereby gladly supported by us, please let us know and ask, we know what it is like when you are confronted with this diagnosis at the beginning, you are completely overwhelmed and in addition there is a mountain of paperwork and you are nowhere informed. I would have liked somebody with such a job, someone who takes me by the hand and tells me what I have to do. 

I didn’t even know what I was right about, what to do in such a situation and in what order. I don’t know a lot now either.

I cried first through two days and two nights after the diagnosis, said goodbye to my life as I had lived it until then, felt sorry for myself. Then through support-groups and Facebook groups I learned one by one what to do. I didn’t know what „medical service of the health insurance companies„ (MDK) is, or what they do, how to apply for a severely handicapped card and what to do with it and what not, what a „social association“ is and what they do for one… and much more.

Every day I had appointments and something to do. I partly managed my tasks with a project management tool, so that I have an overview of everything, don’t forget something and the results don’t get lost. Just like I used to do at work. It’s not even an exaggeration.

While I was operating the bureaucracy, I read countless documents about this disease, I studied it, if you will say so, so that I understand what is happening in my body and brain, why are the healing chances like they are. Dealing with forum postings day in and day out, getting to know other patients, is not easy. Reading about other people’s symptoms is a drag down – is all this waiting for me? Getting to know other patients was good, “understood” without me having to explain, the phone calls with Marion, for example, were really good – whereas good is relative, if you can call crying positive… But there were also contacted with other patients, who I hardly understood on the phone, who sat in a wheelchair or were fed with a feeding tube. Some contacts were frightening.

Now I have a WhatzApp group of five women, all of us somewhere in Germany. All of us diagnosed with MSA. So we help each other and when someone hears something new, has a question, that is the place where it is discussed. We also talk about everyday things, and jokes are also made, we also laugh about ourselves. 

What really happened in the past weeks? As always – one step forward, two backwards. A few new symptoms, a few symptoms that I can deal with better. Last week I was in Innsbruck and found out that they don’t have any more places there for the BIOHAVEN trial, which I absolutely want to do… I have an appointment here in Munich in November and I have already been to the hospital in March because of that, I want it finally to know!

And it goes first to Canada, as long as I can, visit my lovely cousin, see the ocean, Bucketlist must be worked off!

The privilege of being disabled

After my diagnosis, I got ridiculous 40 disabled points, which is almost nothing. That means kind of 300 Euro tax advantage in a year, or something like that. I really have to shake my head, I have an incurable disease, my life feels like a carousel ride in my head and then that. I’ve heard that in America MSA patients are treated in the same way like ALS patients and automatically get 100%. It is said that MSA is like ALS on drugs – which is certainly true because anything can happen, at any time. For me it is, as if every day fate would flip a coin: “So, what kind of symptoms do we want today?”

I was declined that time, and being said if things gets worse, I can make a new application. Thank you. Worsening is every day. I understand that MSA is a rare disease and people don’t necessarily immediately know about, that it is not a widely known disease, like diabetes or stomach ulcer, but why do people sit in these important positions and decide, if they have no idea? What kind of people are they, what did they learn? They should know this disease, that’s their job! And if not, then they should inform themselves. People’s lives depend on their mood! Then they should have learned gardeners… I have six months this illness behind me (officially), of course I have a worsening.

Recently I had to go to the doctor, because the date on my OT prescription was not correct. What should be a short trip, because the nurse can change this, and I don’t have to go to the doctor. Usually, when I go to the doctor, I park (despite two, always empty disabled parking spaces) somewhere on the end of the world, kilometers away from the practice. First, I have to find a parking space, second, it has to be one, where I have enough space to get out of the car and I don’t scratch my car, or the car of my neighbors. I don’t even drag the walker with me, because I couldn’t lift it out of the car anyway (despite carbon, which of course is not covered by the health insurance…) So I park somewhere and try to reach the doctor with the cane, sit on the fence to breathe, wheeze like a racehorse and am glad not to have dropped in a public.

So I parked “quickly”, on one of these disabled parking lots, I just have to get in and out, I thought, nothing is happening, and I’m not doing it out of laziness, it’s actually mine, I dare.

That’s how it was, only when I returned, a policeman stood next to my car and happily gave me a fine. I told him, of course, that my procedure runs on a disabled person’s identity card, that I have a neurological disease and only had to see a doctor quickly. The policeman then examines me as if he had any clue and asks me what I have. Exactly. He wants to know, where my GP never heard of MSA. Inside myself I roll my eyes. I wave off, it doesn’t matter, he should please move his car away so that I can drive out. Is everything pointless, what am I supposed to explain my illness and beg here on the street? Then I will pay the fucking 35 Euro fine. Inside me I think deeply “I wish you, only for one day, that you feel like me”. Police, your friend and helper…

The picture perfectly describes how we affected people feel sometimes

I heard today that you don’t have a chance anyway, on the highly desired disabled parking lots as long as you can walk. That explains why all of them are always empty. Because those, who “have the right”,  don’t get out of bed and don’t drive anyway.

Thanks a lot, my life is great now! According to the motto: everything that doesn’t kill me, makes me stronger. And when I am dead, I’ll get a disabled person’s identity card, then I have certainly fulfilled all the criteria then, then I will be quite incapable of moving….

Photo / suze / and #All WheelChair Stuff