It was at the beginning of December four years that Santa Claus gave me the diagnosis. I must have been terribly naughty. I will never forget the shock of that day. On that day my life was over and since then life is getting less and less. At a rapid pace.
Writing has become so difficult for me that I hardly write at all. My handwriting has been illegible for a long time, but writing on the computer is now also very tiring and time-consuming.
I used to think that with sports, exercises and mobility I could keep this stupid disease under control. With proper nutrition and holistic medicine. Today I see it a little differently. Being active certainly helps and delays the progression, but you never know what will happen tomorrow, how severe, and whether it will stay that way. So I lost my ability to walk from one day to the next. I was still on my feet, and during a nightly visit to the toilet, my blood pressure dropped to zero, and I fainted. I have a nice cut on my forehead as a memory. And since then I have been in a wheelchair. What the one has to do with the other, I don’t know. I have often heard that after drastic experiences, illnesses or emergencies, there is always something left behind, the whole thing usually brings a step backwards.
In the meantime, I have many symptoms, and doing something about them is becoming more and more difficult. The dizziness, the lack of strength and the pain, make a dash through everything. However, I am amazed to find that nothing is as bad as the mental suffering. This raging and devastation in the body, this illness, how the illness disintegrates the own body, the being at the mercy, the helplessness and the decay, is worse than any pain. For me at least. Losing trust in my own body was the worst for me. And now, in addition to physical failure, there are also senses and also communication. Not being able to communicate is the worst thing I have ever experienced. With effort it is still possible, it is extremely exhausting and time-consuming, but it is predictable how it will end. One lacks the strength to make oneself noticed at all, to participate in a flowing conversation is no longer possible. Much runs only in the thoughts. I have written a lot of blog posts in my mind, had a lot of conversations and written countless letters. It’s really a bad punishment when your brain is faster than your fingers or tongue.
The comparison of what I could do four years ago and what it has become is shattering. I have zero multitasking ability anymore. But I could do that perfectly. In the meantime I can only do one thing. For example, I can’t steer my wheelchair and wave at someone at the same time. I have to stop to wave. If several people speak at the same time, I can’t understand a word. I could write pages here, starting with four years ago I could go from A to B or articulate a sentence understandably. Or write my name.
Often the question of fighting arises in me. Yes, we are often seen as “fighters” by others, especially in front of loved ones. We like to see ourselves in this role too. We also fight day in and day out. Against the symptoms, to show the best version of ourselves. We pick ourselves up again and again to do our exercises. We fight against windmills. The fight also needs a goal. And here there is no goal. I wonder if I am tired of fighting? I just don’t feel like fighting for something that can’t be measured. I am not one of those people for whom “living two days longer” is a goal. I am bored with this “one step forward, two steps back”. Whereas “one step forward” is already too little.
All in all, I am also running out of time, so there are also some wishes that I would like to work for, now for the future generation. Like for example a patient association. A founded association. Because representing the interests of MSA sufferers through an association is always easier. Then I would have liked to have seen that newly diagnosed MSA patients (or atypical Parkinson’s patients in general) immediately after diagnosis 100% GdB get, automatically with aG, because facilitated parking is essential for the patients as long as they still drive. So that the eternal fight for the blue badge stops. It must be made clear at crucial points, driving automatically enables a self-sufficient life and opens the possibility that patients can move self-determined. Then I would like a training of the MDK, so that one does not have to fight for care degrees, so that the understand what a fast progressive illness means. They are interested in the status “now”, but do not understand that our status will maybe deteriorate significantly tomorrow. Care level 5 after diagnosis? That doesn’t seem unreasonable to me. In general, I think the training of medical staff is important. I can accept that MSA is generally not so well known, but medical staff, doctors and decision makers should know about it. A standardization of how to communicate a diagnosis would be incredibly important. Patients and doctors need to be helped. To get such a diagnosis and to communicate it is not easy. How this is written and communicated, should not be the matter of each doctor, and the patient would have to be supported. This is certainly a long way, but everyone can help to make the disease better known. Flyers to put out, are with our new follower are in work. In addition, what I would find elementary important: a counseling center. When I think of the first days of despair after my diagnosis… Getting such a devastating diagnosis is devastating enough, we also have to deal with existential problems. What to do and how to do it, and what one is entitled to, to know all this in one place would be an enormous relief.
As you can see, this disease dominates the whole life at some point. The elephant is in the room. At some point permanently.