Posted on by Marta

Three weeks of therapy – a summary

So, I’m almost done here. All in all, I can say that the whole thing has not really brought me anything. If, then so much that I speak here more, get up earlier and eat regularly. Because of the pandemic, some activities were cancelled, such as swimming and singing. I am not angry at all about singing, swimming I find a pity, I am not allowed to use the swimming pool unattended. The stuff are all friendly and helpful, but it’s primarily a Parkinson’s clinic and everyone assumes it’s about Parkinson’s in my case, doctors and therapists. But a pure MSA clinic does not exist – at least not that I know of. The MSA patients who respond to Parkinson’s medications are lucky here. Our disease , also called “Atypical Parkinson’s” is the closest to PD. The doctors here at least know about us, that’s something, but they can’t help us either. What is a bit annoying is to explain to all, patients as well as therapists, that I don’t have Parkinson’s and what multisystem atrophy actually is. I then say imagine Parinson’s and ALS have a child, or it is like Parkinson’s only much faster, with more symptoms and fatal.

Dopamine was tried again, still does nothing, so it is discontinued again. Because of the low blood pressure I get something that I am not like bird poop in the air, especially in the morning. And I get another medicine (I don’t want to mention the name here) which my neurologist actually advised against. Whether this is good or bad for me, I don’t know. One learns: Doctors have actually also no clue.

I would actually like to have more applications here, but the therapy here is more about optimizing medication, not about movement and activity. However, the individual physiotherapy sessions were good and useful and I learned something new. They were just too short. At home I actually do more and have a program with my therapists that is tailored to my needs. I also do more on my own, while here I am just waiting for the next program point.

For patients with health insurance there are double rooms, single rooms are available if you pay extra. Double rooms are not so good for MSA patients, they can be disturbed by the room neighbor at night and we know what bad sleep means the next day. Just so you can disturb the room neighbor yourself, many MSA patients are restless in their sleep and make loud noises which can disturb the other person. I was lucky that over the holidays the clinic was not very busy, I was alone in the room most of the time. I also find such periods better, by the fact that there are few patients there, everyone has more time for and attention to one. From what I have experienced, here in the summer is fully occupied and very busy.

Double rooms for patients with companions practical. Over the holidays had also been many couples here. In general, caregiver are common here. So patient on referral slip, the caregiver at his own expense. Visitors are not allowed at pandemic times, there are strict requirements and weekly tests, which I think is good. However, mail can be sent here, some have received their Christmas gifts here by mail. You can leave the house, the countryside is very beautiful, you can go for walks and shopping is also nearby.

Speaking of patients with accompaniment. I have often observed here how lovingly partners take care of their spouses. Sometimes they are a bit frustrated “Herbert, why don’t you do this and that” – which is understandable. I was torn all the time and could not decide what is better, to be alone or in company. Because sometimes I also wish there was someone there to pick up things I dropped, pack my suitcase, make my bed or cut my schnitzel into bite-sized pieces. But I still have a request to companions, partners and caregivers; even if you feel sorry for your protégé again and many things often look like torture, let him or her do it, let him or her pick up dropped things, fetch something or cut their food – even if the mess is pre-programmed, this is all exercise, activity and movement. Patients often do things wrong, perform things incorrectly. It doesn’t matter! The main thing is that they do it. You can lovingly correct them and help even if it sometimes doesn’t work perfect. Do not lose patience! Unfortunately, I have often seen that the patient loses courage and ambition, which is understandable, and simply lets himself be served freely according to the motto “I can’t do that anyway”. So you lose your skills faster.

In any case, I’m looking forward to my four walls now, I’m starting to pack, that can take a while with me.

Posted on by Marta

Therapy

Many greetings from Biskirchen from the Gertrudisklinik! I have been here since Monday and will stay for three weeks in total.So over the holidays, but because I’m not necessarily the Christmas person, that’s OK – besides, it is here rich and elaborately decorated for Christmas. But it will be nice and quiet over the holidays, many are already leaving, and many of the staff are going on vacation.

That I am here right now was not intended. I couldn’t come here because of my trial, because you are not allowed to change your medication during the trial, and that wouldn’t make sense here. Unfortunately, my trial was fruitless, so I ended it a bit early and that’s why I’m here now.

So here it is nice and countryside, if there would be snow, it would be a winter wonderland. The doctors and staff are very courteous, attentive, helpful and competent. I am currently the only MSA patient here and probably also the youngest patient, the rest are Parkinson’s patients here, average age rather over seventy, many accompanied by partners. I am already used to being alone. At least I have made some nice acquaintances in the meantime. The food is excellent (that being said of me means a lot!), the rooms are large and spacious.

I often compare this with the rehab two years ago. I really notice now how much worse I have become. At home, in the everyday routine, it goes under. Two years ago I still went there alone by train (from Munich to Konstanz at Lake Bodensee), that would be impossible now. In the meantime, I can’t take a step without a rollator. The last year has certainly contributed to the condition, in this residential group, where one could not leave the house practically alone. I walk much more here than at home. Going from one treatment to another or to the restaurant. Quite long distances here, easily 200 meters in one direction, which is already a big challenge for me. One area is also a bit sloped, which is the horror for me. A healthy person would not notice that at all. I was offered, a helper can push me from A to B in a wheelchair, but I prefer to do without. I could also take my meals in a room, I prefer to torture myself in the restaurant, there I have to make more effort to behave adequately, not to break anything, not to spill and to pour my water into the glass and not beside it. I hope the suffering brings something, let yourself go, is certainly not beneficial. Two years ago I was allowed to work out on the machines and use the swimming pool without supervision, now all that is no longer possible. On the way I am eloquently passed by people who are 20 years older than me. When we slurp out from group gymnastics, it looks like the zombie apocalypse….

But the point is that after three weeks here I feel better than before. My goal is to remain mobile for as long as possible and to be resilient a little better. Medications are being tried now. Until now I have refused to take anything, but my suffering pressure is now too great. Levodopa test was made three years ago, at that time without result, however, at that time my symptoms were still quite mild. Maybe it was not noticeable? Now I am going to try it again, I am being given a high dosage, but I don’t notice anything yet. Let’s hope that it brings something. Other patients here are all satisfied and with everyone it has brought something.

The movement here is already worth something.

Merry Christmas and a Happy New Year to you all.

Posted on by Marta

When the going gets tough, the tough get going?

That was always my device (without the question mark),  now it’s even more so. I’ve been in rehab for two weeks now and I’m slowly “old hand” here, I know my way around, I know which therapy room is where to find, I know if I want to get a banana for breakfast, then I have to be early. 

Speaking of food: the cook and I had a bad start, he cooks some delicious things – although I eat vegetarian here – so I did him wrong. Only the breakfast and dinner I am I sick and tired. I can’t see any cheese and no white bread roll anymore. I have the privilege that my food is placed on the table, so if I don’t like it, then I have to go to the buffet and stand in line, like most others. Which I do for dinner to get some salad instead of cheese.

I know when free hours take place at equipment, treadmill and swimming pool, for Nordic Walking I can choose when I am free. Every day I go to the equipment training and to the treadmill. The number of visitors is limited and I usually don’t have to wait. With pride I can report that I can walk for 30 minutes without holding on. (I would never have thought in former times that I will book this times as success – wow, I made a success! – , because for a healthy person is trivial). Okay, I get wobbly sometimes and have to catch myself but at least I let go of the bars, swing my arms deliberately, relax my shoulder, look straight ahead and don’t drag my feet. After 30 minutes I’m also quite exhausted. So I practice every day, because „when the going gets tough, the tough get going“ – we use to say in Germany „only the hard ones come into the garden“.

Socially, not much happens here, I’m still an outsider, I don’t mind, but I can imagine that for a person, who has trouble being alone, it can be tough. . The smokers form their groups, the MS patients as well. I have a hard time because for them it is about how they come to terms with the disease, which is certainly not easy,. But for me it’s something different that matters – how I live with it – that death always for me a topic, to live with a black cloud over my head everyday. How do I live, with waking up every morning, with the question of whether something has changed, and that is never a positive change. How do you live with doing so much and never achieving success? The success should be, that it gets slower worse, which you can hardly measure – how shitty is that? These are the questions I have to ask myself, unfortunately. There is no choice, that is my reality. Helping would be, someone with my illness, with whom I can exchange and comfort myself and him/her, someone who UNDERSTANDS.

I had a consultation on incontinence last week. I know, shitty topic, literally, we all don’t like to talk about it. So, bladder: I have to look for a neurourologist, among other things they have an examination called “urodynamics”, there can be different parts of the bladder that are affected. There can also be done some things and it is determined to what extent the bladder is “nervous”. Urinary tract infections should be avoided, because this is very bad for us. Examinations, however, such as remaining urine examination can be almost done at any hospital. In addition, the bowel issues was made a topic, because the problem associated with it, is also widespread with us, and can extremely deteriorate the quality of life (as I find the word stupid). It’s about emptying the rectum every day so that there is no „traffic jam“ and no urge. One should do something with nutrition (flea seed shells for example) and because this is the case with most of us, one gets an electrolyte from the pharmacy (I already have the name, I just don’t want to advertise the preparation here, if interested write to me), this is not a medicine which is good first of all. This stuff makes the stool more “voluminous” so you can get rid of it easier. The brain gives every day an impulse to the bowel to “make room empty”, usually after breakfast. You should use this period of time and sit down on the toilet if you have to or not.  Put your feet on a small chair, this helps the bowel movement and is also good for keeping blood pressure up. So you should teach the body to “make room empty”, to keep the rectum empty and thus gain a whole day’s time. If all this does not help, there is a mechanical way, a kind of enema, which helps and gives you time.

Now I am armed with knowledge and will look for a neurourologist at home and have my bladder examined to see how “nervous” my bladder is.

What I have become aware of, that I am using a kind of „avoidance method“. I do sports all day, which keeps me from digging deeper. Here you can’t avoid therapies like psychologist, social consultant or occupational therapy (?! yes, they want to know if they can still send me to work) I have noticed that when I start digging deeper, dealing with what I can and cannot do, what will never be the case again and what expects me, in best case it can be something done to slow down this progress, it all spoils my mood for days. There are also days when I can do this better. But I don’t want to occupy myself with it, above all, I don’t want to talk about. Many things just stoke my throat and I can’t talk about them. Thinking or writing is different. But there is nothing left for me, I have to go through this and learn to deal with it.

Speaking of talking: more intensive and more frequent speech therapy would be helpful. I think I will address that, group exercises are nice, but don’t even get a little close to my very first speech therapist, who I had at the beginning and who was great. And unfortunately my language is getting worse, and losing the language is one of my horror ideas.

By the way: my sleeping and eating habits are getting better and more regular. I sleep here more, already around 9pm and last week and I gained a kilo!

Posted on by Marta

Highlights of the rehab-week

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!

Posted on by Marta

Rehab at the lake

I am now 5 days here, I do Rehab in Constance, at the Bodensee in Clinic Schmieder.

I have been to Konstanz before, 7-8 years ago, at a party on a ship, in high heels, make up, chic and in the company of my former partners. If someone had told me at that time, that I would return to a rehab clinic in years to come, I would have been shocked and jumped off the bridge..

Now I am here and collecting my first impressions.

I am pretty sure that I am the only MSA patient here. The location is very nice, the lake is barely a hundred meters away and the weather is good. Daily walks with Nordic Walking poles are on my schedule. The clinic is like a clinic. I estimate 15 years ago, the facility was certainly modern, today I would say it is country-style. I don’t care, what count,  everything is clean and I have a single room. Well, in fact it smelled strange in the first days, what is changing now. Either my ventilation attacks and the excessive spraying with the deodorant shows effect, or I don’t notice it anymore. The rooms are visited daily by the cleaning staff, who make an effort (what that means in a memo, we know).

 

But WiFi is very bad. Fortunately my room is a meter away from the router and I don’t have to suffer as much as the others. But I have a view to smokers’ cottages, where things are always “very vivid”. First I wanted to move, because they had annoyed me, but I think about now, what you don’t do for WiFi.

The cook here has better and worse days. Sometimes I think he hasn’t slept well and then he grows beyond himself. 

Yesterday I had a presentation about nutrition, which was certainly useful for many, I didn’t hear anything new. There was also no mention of the quality of the food, which I found very unfortunate. We Germans are world champions in buying the cheapest food, the density of the Diskount-Shops is the highest in Europe in Germany. Vacation, car, clothes, furniture, everything is more important, than what we shove into our bodies. Where it means “you are what you eat”. Meat from factory farming (has anyone ever asked, what happens to the rest of the chickens, since we only get the breast meat, where’s the rest?), fish from aquacultures, fruit and vegetables seem to last forever thanks to chemicals, etc.?

In any case, I have never seen so many wheelchair users and walker as here. You actually stand out when you don’t use a walking aid.

Not much happened last week, there were “getting to know” appointments everywhere. And I was introduced to the doctor, who actually knows MSA and was very friendly. I had my first visit today, they even asked me if I am satisfied with my weekly schedule. Apart from previous presentation on nutrition or stress reduction, everything makes sense to me. These presentations mainly treat MS patients or stroke patients, who are certainly the majority here. For me, there is unfortunately not much in it, I actually torture myself through the presentation and „my stress limit is exceeded“.

The therapists are different, some try hard, some have no clue. My physiotherapist, for example, is great, but I also made the experience with others, that every wheelchair user is given more attention than me, I don’t look sick when sitting, I just wobble a little – others will notice.

There are many group therapies, where the performing therapist has no idea,   of the clinical picture. I have to accept that, speak for myself if necessary – for example I will next days say that I want to do more for my balance – and till then, will make the best of the situation. 

There are many stairs in the house, one can practice in the free time, I also do walks outside in my free time, there are several MOTOMeds standing around here, so if one want, one can fill the time sensibly. 

So, five days in a row going out, have helped me already, I feel a bit better now, mainly because of the Canada trip I have abandoned myself a bit. But I have to admit, that when walking, the many unleashed dogs are a bit annoying, even if I am not afraid of dogs, but now even a friendly poodle would knock me over. I also have to endure the many hands-holding couples,  especially if one dissolved the relationship because of the disease. But, as a good friend of mine said, you have to deal with these things, otherwise you won’t be able to go at the door soon. 

What certainly does me good is the distance from my own mailbox and all the paperwork and the proximity to water (I saw a kitesurfer on Sunday!).

Posted on by Marion

Last week in rehab: Monday and a little “effzehcontent”

Today my last week in rehab started.

And promptly I was dawdling so much that I was almost too late for water gymnastics. Hennes also contacted me to announce that the new jerseys had arrived. Jerseys are always a tricky topic for football fans. And as you know, the internet reception here in SIEGERLAND Siegerland (boss: I am in Siegerland) is terrible. So neither when I pushed the corridor with too much thrust again, nor in the elevator, let alone in the swimming pool! No picture built up. I could read comments but see nothing. Going out, where you at least have 3G, didn’t work either. The OT fell victim to the visit. I hope that Mr. W has coped with the failure of the “4 wins” round! So I came out after lunch. Aha, I think, these are the jerseys of the former glorious 1.FC Cologne. Well then!

– Home jersey: white, plain, classic Uhlsport jersey
– away kit: different shades of red, quite nice
– alternative jersey: blue with cathedral, somehow funny but not so funny that I must have it

Probably it’ll be the red one, the question is who comes up with it?

Otherwise, I look forward to the season with mixed feelings. If we have 3 points after 6 days of play, I’ll count that as a success.

The Redcords at the end is really exhausting but very pleasant. As already mentioned, the therapists are super …;-)

After the last therapy of the day, you usually meet for an ice cream in the cafe or outside. On Thursday the girls’ group will be dissolved. Do may Doris home, Fr may Uschi home and Marion may Saturday out.

Posted on by Marion

MSA and Summer

The last four days I wouldn’t really be well. If you have a neurological disease, the heat isn’t really good for you. You have considerably less reserves, you get tired more quickly and the heat doesn’t make you feel good either!

Walking is more difficult for me, because I have a constant tendency to spin forward. On the one hand, I tilt forward while sitting, and on the walker I absorb so much push that at the moment I am almost only on my way with my brakes on. Which is of course more exhausting.

The muscles are stiff and painful, especially in the back! I spend my free time lying on my stomach. The therapeutic sand couch, which is supposed to relax the muscles with the warmth (45°), is a circulatory stimulant and was directly exchanged for a cool compress for the knee.

Those of the MSA patients who can still sweat do so extensively. This means that you must always remember to drink more, otherwise your blood pressure will be noticeable again. And because there is an app for everything, here are a few DrinkApps: Drink alarm clock, Drink water or Drinking water.

All this together, brought me the eighth week Hilchenbach. And it’s not cooler here either!

Posted on by Marion

The usual rehab madness – part 2

Helmut is not coming tonight either, which is not exactly conducive to the well-being of the patient in the neighbouring room. Helmut went home 3 hours ago. I wonder if people here know Melperon? And also otherwise it was very restless today. Mr. W. called for help for 2 hours, which didn’t exactly bring him more sympathy among his fellow patients, although he ran so well together across the corridor at the same time (no irony). Doris complains of homesickness. Uschi has the enough of her fellow patient. The mood of the two can be raised massively by a portion of (home-cooked) carrots among each other.

Today I walked barefoot across the hall with Mrs. Sch. and was glad that nurse Olga was still on vacation, she doesn’t like it when you walk barefoot. From the hours with Mrs. Sch. I profit enormously. Usually the rest of the day I have hardly any complaints and my gait feels better.

Meanwhile I am here in the 6th week and have a new routine including time management. I am still dawdling endless but I do not set myself any more appointments before 9am. Routine is important for me, it does me good. I don’t mean that I can’t do anything spontaneously anymore. But in the morning I simply get better into the day.

What else do I benefit from here?

– Loop therapy, the so-called Redcords
– Water therapy/water gymnastics
– physiotherapy
– ear acupuncture
– art therapy (OT)
– speech therapy

Irritatingly wise I benefit also from the building services. ? The television in my room simply went out and no longer on, on a day where the U 17 of the “Effzeh” played for the German championship against the “BVB”. The rest of the game I had to watch on” Borussen TV” (or whatever it’s called).

The next morning the house technician came alone (I’m not used to that), took the quality “Changchong” TV with him (no kidding) and came 15 minutes later with a “CHiQ HD” device!

We are allowed to do rehab once a year and M. Parkinson complex therapy twice a year!

Posted on by Marion

The normal madness in rehab

(may contain traces of sarcasm)

To anticipate, the therapists are super, the care is good! The academic side still has air to the top and the kitchen should buy some spices.

Welcome to Neurology!

I sit on my bed and wait for the rounds, in the corridor Mrs. Sch. from Physio tries to motivate Mr. W. to mobilise! One would like to get up and help briefly. Familiar sentences can be heard. Make yourself big, push your knees through! In the documentary you will surely find entries like together – at the same time! Ursel if you should read this and I was wrong again, I’m sorry! The visit takes place again on the corridor, in passing, because therapy always goes first! But I have a question: ” Concerning a dopamine pump… “  “They discuss that best with their neurologist” OK!

Three rooms further Mr. J. calls for help because he has to go to the toilet!  Unfortunately, this does not fit with the time of arrival of the nurse, because she had to do in the neighboring room. Mrs. K. can’t find her room again, can I help her? Of course, do you see here where the clef is hanging on the door? This is her room.

The 82 year old Uschi and I go clapping our hands to greet her!

To be continue…

Posted on by Marion

5 stadiums

“Give them everything they don’t need to their base,” the voice says to me. “I should do my body good! “she says!  I sit at the ear acupuncture! After the friendly lady has set the needles, the following meditation starts, with a body journey!           

And then it happened, the Pandora’s box was open!   And I was so angry: about my body, which left me in the lurch, about the illness, which will limit me more and more, that Pandora’s box is open at all, and so on.    After the meditation I was sick! I am stuck in the second phase…

I would have said that I was at peace with myself and accepted it as what it was!     

After the ear acupuncture it goes to the art therapy.

I like art therapy! Because it’s not always about the disease but somehow it is!  It helps me to find other perspectives! And brings me to try something new. In the end she manages every time to shoot the can again, so that everything comes out only in small, workable portions!