I’ve been here for about 10 days, slowly I know my way around the house and slowly I know the procedures. In the meantime I have learned that the majority of the guests are MS patients, followed by stroke patients and the remaining 20% fill in Parkinson’s and the rest. So I am “rest”.
In the meantime I have understood that it works in such a way that the chief therapist looks at one and assigns various group therapies, according to complaints and what makes sense. One have several group appointments and one individual therapy in one week. Of course, it is allowed to visit the particular therapist if one have the need. The group appointments are of course not tailored to the individual and often meet the demands of multiple sclerosis patients, who are here in majority. Nevertheless, they are not pointless, I think.
It is also interesting to observe how MS patients form their groups and share their experiences, which is not the case for me. It is certainly interesting for others to hear that there are diseases that fortunately they do not have. For me it is rather difficult to play this role and I prefer to stay alone. It’s not as bad as that, but it would be nice if I could meet another MSA patient here, similar to me, with whom I could interact.
But I already know the role of the outsider and comfort myself with the saying: “Only strong people get hard ways”.
What’s interesting and what’s in store for me now, I have the write all this down for one day, how much I drink and how much I excrete, at what time, with what complaints, when bowel movements take place, etc. For what all this is good, I will know next week.
Today I was in the new building, which is much more modern and from the roof terrace (5th floor) it is an awesome view. I would like to live there!
What I found out here, when what is freely accessible, such as treadmill, swimming pool, circular exercise on equipment.
What is still worth mentioning, on Thursday (3rd October, holiday) I got a visit from Klaus Dürrhammer, the administrator of the group psp.bodesee, who had cared for his wife for a long time and unfortunately lost her to PSP.
It was a very nice and interesting meeting. Even though we are talking about two different diseases, we have many similarities, and both diseases belong to Atypical Parkinson’s Diseases. We often have the same doctors or the same medications and similar symptoms.
It was a beautiful sunny autumn day. What I noticed was, that I am much worse in the city, as at home. All the things that stress me, the sun, the road surface, slopes and grooves, turning, remain standing and start again, crowds of people, especially people in the back. Then I noticed that I could not walk, talk and look around at the same time. To look to the side is anyway bad, for longer ways a walker would be now also more practical than the cane. Nevertheless we found a nice coffee with delicious cake! Thanks for the invitation!