Always goes bad

I have contact with people who also have this disease

I don't actually tell my daughter how bad I feel sometimes. I don't want to burden them any more. My friends are very caring and considerate. And in my house, with the people, I also have good contact. It doesn't make me feel lonely or abandoned. Although the disease excludes one from many.

Some friends find it difficult to understand the disease. You would like to do everything for me. But I have to go out and burden myself. I have to take care of the things that I can still do. The only thing I really have to do is move. But it also takes a great deal of discipline to do the things that I can do on my own. I do gymnastics every day. I move the body through once. I also want to buy dumbbells so that I can get a little stronger. Now I'm looking forward to the summer. To move more again! I rode my bike again the other day. It was hard for me, but it works.

A kind of fatalism has set in with me: I am now 65 and have been able to lead a very active life physically. And at some point everyone has to die. I have contact with people who also have this disease, and I see how it will continue, and I am also a little prepared for it. It's not a pleasant thing to come by.

I often experience when I tell something about this disease that people are frightened. That it scares them because it reminds them of their own mortality.

Because of my life story, I had to deal with the subject of death more often. I see life differently now. I have experienced a lot of pain, but also a lot of wonderful things. At some point it will be enough. With this attitude, a lot is more pleasant and easier for me. I've already arranged for a burial place. A woman from my house said to me when she saw the prospectus lying with me: “You mustn't bother with that at all, you mustn't even think about it!” But that's exactly what I have to think about. It concerns me. I think I have to sort this out for myself. I've already made a patient's will and arranged my funeral. If you consciously deal with it, it loses its horror. I also think it's the most adventurous event besides childbirth (laughs).