Posted on by Marta

This demand for happiness and gratitude is annoying

Being dissatisfied or unhappy is totally taboo. Negative thoughts and feelings in general. We have to deal with the most devastating disease, our lives, and often the lives of our family is out of joint, but whereas we let sadness show through! We are fighters and grateful for every fart. That the sun rises and because the birds chirp. We are up to our necks in water, our prognosis is enough to make us cry, but we are expected to be optimistic to the point of losing reality, to hope, to fight and to seize every opportunity, no matter how senseless, because we want to leave no stone unturned. We spend a lot of money, yes, our last shirt, on magic doctors and remedies, we swallow shovelfuls of food substitutes without knowing whether it helps or not. In our case, of course, it’s also hard to say if anything helps. We don’t know what it would be like without it. And everyone recommends something, neighbors, family members, friends. They mean well, they want to help.

But scolding and being angry is so satisfying. So for me. It is scientifically proven that pain and agony are easier to bear if you scold loudly. Expectant mothers in the delivery room are so loud for this reason. The pain is relieved by screaming and ranting. Even mental pain is more bearable with angry words.

But we are a sunshine in the long run, always showing the best version of ourselves. We would never admit that we are fed up. We don’t want to disappoint or upset our loved ones. After all, they sacrifice themselves quite a bit for us. We also don’t want to scare anyone. Because being in a bad mood would be a sign that we are in a bad mood, and of course that would be a reason to worry.

Of course we are in a bad mood! What if not such a disease would not be a reason for it!

However, everything around us urges us to be positive all the time. Media, advertising, products, coaches. Thought moves mountains! You can achieve anything if you believe in it and fight hard! Even from failure and despair you should draw something positive and learn. I have probably done something wrong if the success fails. Next time I will try harder. “Get out of the negative spiral – 5 tips for a healthy mindset and positive thoughts”. And of course, we are not spared the thought: is this illness possibly the result of negative thoughts?

Everything sprays from positive thoughts, shower gels, salad sauces, teas, washing powder are already called so. “Sunny flower meadow” fabric softener “Inner strength” smoothie or “Happiness” chocolates. A social environment that screams at us from all directions “Be happy, fit, beautiful and rich”. An alternative lifestyle does not exist at all. And we find it hard to find our place in this milieu. Our body is degrading, we can’t even shave our legs or dye our hair, our livelihood is constantly deteriorating, we now have to make do with a paltry pension instead of a salary. Our psyche is put to the test, instead of fancy two-seaters, we now drive a wheelchair and instead of sexy underwear incontinence pads or a catheter.

The social networks are full of this terror. Pictures of the dream vacation, of the gourmet food, the new-cry hairstyle, designer outfit, beaming people when learning new hobbies, the successfully passed exam, the new racing bike, surfboard or car. All these achievements, which are now denied to us, suggest to us how to live properly.

Many therapists and coaches want to teach us that our life has changed, and we must now look at the whole thing from a different angle. To discover new ways and possibilities. Thank you very much, I can turn and turn stomach ache around, it just hurts, no matter how and where I look at it.

Like this. I am tired of it. I am tired of it and it is too stupid for me to put on this eternally smiling mask. This demand for happiness and gratitude sucks. To hate something or to feel that something is unfair does not mean that I think negatively. It doesn’t matter if the glass is half-empty or half-full, for me half is missing. No matter from which angle one looks at it. And if I rant loudly and feel sad, it doesn’t mean I’ve stopped fighting. I just wasn’t born to be locked in my room in this weather, but to ride my bike around the lake. Watching others fills me with bitterness, sadness, even envy. And no, it’s not nice. Or noble or eloquent. But that’s the way it is. It doesn’t mean I don’t begrudge someone this or that. I begrudge everyone – but me too!

It is not easy to find the right mind for various people. My favorite are those for whom it does not have to do at all. My friends are like that. I have chosen them myself. Har-har. For everyone else, the familiar saying applies: “Before you diagnose yourself with depression, make sure you’re not surrounded by assholes.”.

Okay, that was more cynical than I thought it would be, you know what I mean though. So, I’m bowing out now with the corners of my mouth hanging down. And I don’t expect anything from my fellow man, no “it’ll be alright” (no it won’t), a “fuck, what a shitty day” is perfectly enough.

Posted on by Marta

How are you?

Currently I am dealing a lot with pain. Primarily out of my own need and distress. Almost daily people ask me how I am and I have several problems with that. Often I answer the question with a general “As always”. But often the question is not meant superficially at all (which happens often enough) and an exact answer would be important.

It is often therapists who want to know how one is doing in order to be able to carve the planned program appropriately. Because I often give a vague, imprecise answer, the lessons often turn out ineffective, I am now often not exactly understood and as a precaution, less and gentler work is done.

My problem are several things. Because my language is declining, detailed description is difficult. I also don’t like to lament long every day, a short answer is not possible. Often I don’t give myself enough attention. Accurately describing where and what I have takes time and I have to actively deal with how exactly I feel.

I often hear from other MSA patients statements like “Everything hurts”, “I have such terribly heavy legs” or “I can hardly move from back pain”. I myself have trouble getting an accurate idea of exactly what that pain is. 

We all perceive pain individually. There are people who are very sensitive, snivelling and anxious, while others can take a lot. So it is certainly not easy to categorize and objectively classify the pain.

There are also days on which one is more sensitive, whether this has to do with the weather, the moon or with one’s own psyche, I don’t know.

In any case, the importance of the whole thing is now clear to me. How can important and close people assess our condition, when we can hardly do it ourselves. And appropriate behavior towards us is only possible if these people know exactly how we feel. Are we able to take a walk (whether with a cane, a walker or a wheelchair)? What about physical activities? Very often I have the experience that out of caution, pity or any other reason, people treat you wrong, you are underestimated or overestimated.

For this reason I have made a table, which I can fill out simply, only with crosses, and relatives, therapists and caretakers can read off effortlessly, each day anew, my condition. A positive side effect is that I regularly have to deal with how I feel. There is a tendency for improvements and deteriorations to become blurred, so you more or less always have something.

> Categorize pain

I will print this file and fill it out every day. I hope this will eliminate the daily “how are you” question. And I may be better and more accurately understood. I’m sure I’ll come up with more in use, so this is certainly not the last version. Maybe someone else will benefit from these thoughts, so I’m putting this online. Who has an improvement, adaptation or a good idea can write me very gladly!

Posted on by Marta

About breathing

Lately I have noticed a change – among others – in myself. In the evening, when I lie on the couch, I have unusual breathing. I have to take deep breaths more often, it’s like I’m bubbling. As if I needed more air. I have been observing it for a few days, it does not happen every day. However, so far only when I am lying down. Sometimes there are also strange palpitations, I never thought that one could be related to the other. But it probably is. Always in the evening and always lying down. This led me to read up on what breathing is all about. So I came across an article by Abraham Lieberman, which I would like to share with you.

The info and findings below are based on research in Idiopathic Parkinson’s and other neurological diseases, but it can easily be compared to MSA.

Breathing is a basic life function that occurs automatically – usually without conscious experience. Breathing is controlled by the respiratory center in the brainstem, located below the basal ganglia and above the spinal cord. When the respiratory center sends a signal, the chest wall muscles and diaphragm, the muscles surrounding the lungs, contract. This increases the space between the chest wall and the lungs, decreasing the pressure inside the lungs (compared to the outside pressure), and the lungs inhale to equalize the inside pressure with the outside pressure. As the lungs expand to fill the space in the chest wall, a second signal is sent to relax the muscles. As the muscles relax, the space around the lungs narrows, the pressure in the lungs increases, the lungs exhale, and the air is pushed outward. The brainstem makes its decisions about the rate and depth of breathing based on information it receives from the body. This information includes the oxygen content of the air, the oxygen content of the blood, the content of exhaled gases, the carbon dioxide content of the blood, and the acidity or alkalinity of the blood. Carbon dioxide content is the most important factor in controlling respiratory rate and depth. 

Shortness of breath in heart disease

Shortness of breath, difficulty breathing, a conscious awareness of breathing, may occur due to disease of one or more heart valves. When the valves are scarred or leaky, fluid accumulates in the lungs and is not pumped into the circulation: This is called edema. Shortness of breath can occur because of heart muscle weakness. This is called cardiomyopathy. The heart is a muscle, a pump, that circulates fluid through the body. When the heart muscle is damaged by repeated heart attacks, inflammation, or drugs such as alcohol, the pump fails and fluid (edema) accumulates in the lungs.

Shortness of breath can occur because of a buildup of fluid in the pericardium, which surrounds the heart. This is called pericarditis. This fluid restricts the expansion and contraction of the heart, leading to heart failure – with fluid backing up into the lungs. Shortness of breath may occur due to a disturbed heart rhythm. This is called an arrhythmia. In an arrhythmia, the heart beats so fast that it does not have time to fill properly. This insufficient filling results in decreased contractile force, and fluid accumulates in the lungs.

Shortness of breath in lung disease

Shortness of breath occurs when airflow through the nose, trachea or bronchi is obstructed. The disorder may be caused by inflammation, infection, or obstruction of the nose or airways. Common causes include inflammation, infection, or allergies that lead to a “stuffy nose,” bronchitis, pneumonia, or asthma.

Shortness of breath occurs because the exchange of oxygen from the air into the lungs is disrupted. This exchange takes place in millions of tiny bubbles called alveoli, which surround the ends of the smallest bronchial tubes like tiny balloons. Impaired airflow into the lungs, or oxygen exchange, forces the patient to strain harder to breathe, decreasing the amount of oxygen taken in with each breath.

Shortness of breath also occurs with diseases that restrict the movement of the lungs, such as diseases that cause scarring (fibrosis) of the bronchi and alveoli. These include:

(1) Repeated infections with bacteria, fungi, and tuberculosis.
(2) Repeated irritation and inflammation from chemicals such as asbestos, coal dust, smoke, and certain medications.
(3) Collagen diseases (or diseases of the supporting tissues) such as lupus.

Risk factors for lung disease include:
(1) Cigarette smoking (a major risk). This includes smoking marijuana.
(2) Occupations in which chemicals or dusts are chronically inhaled, such as asbestos workers, miners, or firefighters.
(3) Chronic infections such as tuberculosis.

Shortness of breath may occur after light exertion or exercise, exertion or exercise that has not previously caused shortness of breath. Or, shortness of breath may occur after lying down. The circumstances under which the shortness of breath occurs may indicate whether the shortness of breath is due to heart or lung disease. For example, shortness of breath after lying down is more likely to indicate fluid congestion from a failing heart than from a failing lung. Shortness of breath due to lung failure, emphysema, on the other hand, is more likely to occur with exertion or exercise. Coughing and wheezing may accompany shortness of breath in both lung and heart disease.

Shortness of breath in diseases of the nervous system.

Shortness of breath occurs in diseases that weaken the muscles of the chest wall and diaphragm. These are the muscles that surround the lungs and act like bellows. When you breathe in, they contract, causing the pressure around the lungs to drop and the lungs to expand, forcing air from the atmosphere into the alveoli. On exhalation, the chest wall muscles relax, narrowing the space around the lungs and expelling the air. Diseases that cause weakness of the chest wall and diaphragm muscles include muscular dystrophy and myasthenia gravis. The resulting paralysis is similar to the intentional paralysis caused by curare-like agents used in anesthesia.

Shortness of breath occurs in diseases that inflame the nerves that control muscles. These conditions are called neuropathies and include Guillain-Barre syndrome.

Shortness of breath occurs in diseases of the spinal cord. The spinal cord controls muscles, including respiratory muscles. Spinal cord diseases include Lou Gehrig’s disease and polio. Shortness of breath occurs with strokes or spinal cord injuries, such as the injury that paralyzed Christopher Reeves (“Superman”), requiring him to breathe with a ventilator.

Shortness of breath in Parkinson’s can occur in several ways:

(1) The chest wall muscles and diaphragm can become stiff. During inhalation, they do not fully expand. And during exhalation, they do not relax completely. This impairs the bellows function of the lungs. 

At rest, the normal respiratory rate is 12 to 18 breaths per minute. In some patients with advanced PD, the respiratory rate exceeds 18 breaths per minute. Patients use more energy breathing, tire more easily and become short of breath. If they also have heart or lung disease or have smoked in the past, shortness of breath is exacerbated by these circumstances.

(2) Severe spinal deformity can restrict lung movement and cause shortness of breath. While some Parkinson’s patients have mild deformity, deformity severe enough to cause shortness of breath is rare. These patients are more comfortable sitting or standing than lying down.

(3) Dyskinesias or involuntary movements may occur. Some patients who fluctuate, who do not take levodopa constantly, may complain of shortness of breath. The shortness of breath may occur when they are “off,” that is, before taking levodopa or without, when the chest wall muscles and diaphragm are stiff. However, shortness of breath can also occur while taking levodopa if the dyskinesia causes the chest wall muscles and diaphragm to contract less efficiently.

Parkinson’s patients with rigid chest walls or severe spinal deformities may complain of shortness of breath during exertion or exercise. Or they may complain of shortness of breath when lying down. When we sit or stand, gravity normally assists the downward movement of the diaphragm. When we lie down, we lose the help of gravity. Some Parkinson’s patients are unable to compensate for this loss and complain of shortness of breath. In some patients, the shortness of breath is so troublesome that they are asked to sleep sitting up in a chair.

(4) Anxiety. Parkinson’s disease patients can be anxious like any other person, and this can lead to shortness of breath. 

Treatment of shortness of breath in Parkinson’s disease.

If a Parkinson’s patient complains of shortness of breath, either on exertion or while lying down, this needs to be investigated. The correct diagnosis can be made by an internist, a cardiologist, and a pulmonary specialist. If the shortness of breath

is not related to heart or lung disease, or if their contribution to the shortness of breath is small, then it is likely that the shortness of breath is related to Parkinson’s disease.

If the shortness of breath is related to stiffness of the chest wall muscles and diaphragm, additional anti-Parkinson’s medications, especially a long-acting dopamine agonist, may help. If the shortness of breath is related to dyskinesia, levodopa should be reduced. A long-acting agonist can be used to compensate for the reduced levodopa.

Posted on by Marta

What does MSA mean for (care) relatives?

 

(Guest article from Silvia)

In 2017, my husband had the first symptoms – slight balance problems and speech was sometimes a little slurred. At that time he was still very sporty, hiking in the mountains, cycling with friends and riding his motorcycle were his hobbies. Then came the first fall from his motorcycle – thank God while standing still – he just couldn’t hold it anymore and fell. In the mountains he became increasingly unsafe. In 2019 the first visit to a neurologist – various tests were done, an MRI of the head. However, the images were not examined at all, only the findings from the radiologist were read: everything age-appropriate (what’s wrong with the wife?). In the next months the balance problems became worse (neighbors thought he was drunk), the speech more blurred, the writing changed strongly and became more and more illegible. Somehow I had a very bad feeling and decided to give up my store. 

On recommendation of our family doctor new appointment in March ’21 in another neurological practice – this time I was along. On this day my husband had an extremely bad day – what a luck I thought that finally someone sees and hears it. Various tests and a new MRI suggested that it was a disease of the cerebellum. For further clarification I was admitted to the LMU Munich in June ’21. Because of Covid I was not allowed to visit him. After a few days came the call from the Prof on the ward, which completely blew me away! Never heard of MSA and Hot Cross Bun sign before. I was told what this disease means, that there is no therapy, that my husband has already lost a lot of nerve cells and that this is the reason for premature aging. I was just shocked and could not say anything. A young female doctor explained to him that he would have to be prepared to move or that handicapped-accessible modifications would be necessary. Is there a living will? Are there things that need to be notarized? It just hit us like that and from one day to the next nothing was the same. My beloved husband is a nursing case in the foreseeable future?Whereas we wanted to make ourselves comfortable now and enjoy our grandchild…. A single nightmare. 

I immediately contacted the nursing care insurance, applied for a nursing care degree and somehow it worked. For weeks we were just in shock, not a day without tears. The worst part for me was explaining it over and over again to all my family and friends. Each time I cried my eyes out, and to this day it still drags me down. 

Of course, I immediately looked for information about MSA on the Internet – and what I found was just horrible. Until I came across this site – my respect to Marta and Marion, who as sufferers have set up this blog! Thank you for that! And thank you for your wonderful writing style with your special humor and a dash of sarcasm, dear Marta!

In this last year Klaus has aged 15 years. The walking distance is very limited, since October he has a bladder catheter, in December he had urosepsis, which unfortunately worsened his condition. Meanwhile I am responsible for everything – I am a nurse, cab, housekeeper, arrange banking transactions, organized the installation of a bathroom for the disabled and the stair lift. A 24 hrs/7 days a week job.

Every week is planned with therapy and doctor’s appointments or very simple things like a visit to the hairdresser. It’s a job I’m of course doing – for better or for worse – but it also pushes me to my limits from time to time. And I admit – sometimes it’s also annoying – when everything takes 3x as long as before. 

Now we both need to get out of here, in April we’ll be in the mountains for a few days. I have rented us a barrier-free vacation apartment.

Sometimes I think it would be nice to exchange ideas with other relatives, someone who doesn’t know this disease doesn’t know what I’m talking about. It is just always present and it tears my heart to have to watch how the beloved person, with whom I have lived for 43 years, degrades more and more. 

Posted on by Marta

Do what is possible

For about two weeks now lives the sports group. That’s me, and a handful of participants from our online group. We do one hour of sports every day, each as much as possible and does one good. After seven weeks, we evaluate the data and see whether it has brought any results.

The initiator of the action was a mobility study, where they rejected all of usl there. Because we are all MSA-C, and the target group of the study are MSA-P-patients. Now we’re doing our own little study, and we’ll see if it’s any use.

What can I say after two weeks?

First of all, this group feeling is good. Sometimes it’s so hard to overcome your inner weakness. If I didn’t have this group feeling, I would hole up on the couch here and there and do nothing. But I don’t want to embarrass myself in front of my fellow members, so I get up and do my stint.

For me the first days were hell, it was rather worse than better. It was also scary to actually realize how bad I had gotten. When you don’t do so much, you don’t notice how fast you degrade.

So slowly now the whole thing is making itself felt. Less pain, one is more flexible, fatigue better. What remains is the bad balance. And you still have better and worse days. Sometimes you do the whole thing with a lot of verve and a lot of strength, sometimes you have the feeling that you are a balloon that is half empty.

The whole thing also makes me realize what has become of me, of my life. Four years ago I was living life to the fullest, running 12 kilometers in an hour, doing yoga, kite surfing, EMS… and now I can barely walk a few hundred meters on a rollator. Every little step, as well as from the couch to the fridge, or at night from the bed to the toilet – everything is at risk of falling, which can mean a fracture or strain, which can affect the course of my life. What I do now and call exercise wasn’t even worth paying attention to recently, and was laughed at by me.

Before the diagnosis – 2017 on the way to EMS
After the diagnosis – 2019 running up and down stairs – where it still worked without help

The other day I saw a program on TV about cancer. And celebrities who have successfully fought against it. Cancer is also a vicious disease, no question about it. What I would be happy if I had a chance to fight. The stupid thing about this disease is that the outcome is inevitable. And you have to digest that once. This finality is so hard to accept. I would like to fight so much. But for what? For two days of life extra that I may live undignified? Is that a meaning? Anyway, I do and do as much as I can, even if I don’t necessarily know for what. Maybe this way I stay mobile and self-sufficient longer.

It’s hard to motivate myself every day. I get up in the morning, and I think “Again?”. 

I would like to be more present. We and our disease is so invisible. That someone speaks for us. Because in the meantime I can’t even speak for myself because my language is so stupid. 

Anyway, as long as I’m still here, I’ll keep going. And if the disease takes away my ability to act independently, I’ll leave voluntarily.

Posted on by Marta

Dentist visit

I recently had a visit to the dentist. It is never a pleasure and as the disease progresses it becomes more and more difficult.

My dentist had MSA in the family, so he knows what to look out for.

Regular visits to the dentist are important for all of us. For people with multisystem atrophy, dental care is especially important because the health of the mouth, teeth and jaws can be affected by the disease and make dental care more difficult. Poor dental care can affect nutrition and increase the risk for stroke, cognitive impairment and weight loss. People of all ages with multisystem atrophy face similar challenges, but in the elderly, the problems can be particularly severe. 

 

Because of the physical effects of multisystem atrophy, such as stiffness and tremor, nearly half of all MSA patients have difficulty with daily oral hygiene. These symptoms also make going to the dentist more difficult and uncomfortable. A weakened ability to swallow can increase the risk of choking during treatment. In addition, people with MSA who have been taking medications such as levodopa for several years may begin to develop dyskinesia (involuntary movements) that can affect the jaw causing teeth grinding. This can cause problems during dental exams and at home. A weakened ability to swallow may increase the risk of aspiration (swallowing) during treatment.

Difficulty swallowing saliva can lead to a fungal infection in the corners of the mouth, which is easily treated. On the other hand, people with MSA may suffer from dry mouth, which increases the risk of tooth decay and can lead to difficulty chewing and with dentures. In fact, MSA patients clean their dentures less frequently than others in their age group. 

Non-motor symptoms such as apathy, depression and forgetfulness may cause people with MSA to pay less attention to their daily dental care. Other behavioral changes may affect diet. People with MSA require a higher caloric intake than people without, but in turn, some people have less appetite. Combined with poor dental hygiene, this often leads to a tendency to devour nutrient-dense foods like vegetables without chewing. Some people also develop a preference for sweets, putting them at higher risk for tooth decay. 

People who suffer from cognitive changes are also more likely to miss dental appointments and less likely to report toothaches to their care partners or dentist, leaving problems untreated for too long. 

Try using a toothbrush with a large handle and soft bristles. A smaller brush head will reach the corners better. To get a better grip on the toothbrush, it is recommended to put the handle in a tennis ball. 

Another recommended option is to use an electric toothbrush, which uses fine, repetitive movements to best protect the teeth. 

Brush for two minutes after each meal, and brush the tongue as well. To be thorough, you should be consistent when brushing. Start on one surface and go from right to left or vice versa. If it is not possible to brush after a meal, it helps to rinse your mouth with water. Flossing is important, but may require the help of a care partner. 

Mouthwashes are not recommended for MSA because of the risk of choking and swallowing disturbances. A fluoridated toothpaste or rinse may be used. Fluoride helps increase the teeth’s resistance to the harmful effects of bacteria.

If you wear dentures, take them out after each meal and then brush and rinse them. 

There are several ways to optimize dental visits, starting with strategic scheduling. Schedule visits when wait times are shorter. Take levodopa 60 to 90 minutes before the dental visit to have the best comfort you can. 

Caution with Surgery/Anesthesia. If dental/surgical procedures are planned for an MSA patient, local anesthesia should be preferred if possible. However, some local anesthetics contain epinephrine, which can adversely affect blood pressure. Make sure the dentist or surgeon and the anesthesiologist know that MSA affects the autonomic nervous system. The MSA patient must be well hydrated via IV before and during surgery to maintain a safe blood pressure. The recovery process should also be attended.

It is helpful to inform the practice about MSA and your symptoms when you make an appointment. It is difficult and dangerous for dentists working with drills and other sharp instruments to perform procedures on a moving target, which can be caused by uncontrolled tremors.

It is also challenging for dentists when people have difficulty sitting in a dental chair or holding their mouth open for extended periods of time, or when there is a risk of choking or swallowing if they have difficulty swallowing.

There should be someone in the office to take vital signs upon arrival. Inform the dentist if you are taking an MA0 inhibitor, as there may be interactions with anesthetics. 

As the disease progresses, the time period in which a person responds optimally to medications becomes shorter and shorter. For this reason, it may be helpful to schedule a series of shorter visits to the dentist’s office rather than one longer visit. Replacement of old fillings, crowns and bridges, and ill-fitting dentures should also be scheduled in the early stages of the disease. In particular, if invasive procedures such as dental rehabilitation are needed, they should be done as early as possible in the course of the disease to minimize risk. And if you’re not sure whether the risks outweigh the benefits for a particular procedure, your neurologist may be able to help.

TIPS 

  • Use an electric toothbrush.
  • Try strategies that allow you to use the stronger side of your body.
  • Try alcohol-free mouthwashes with chlorhexidine or baking soda.
  • Schedule dental appointments, approximately 60-90 minutes after a levodopa dose.
  • Ask that the dental chair be placed more upright to facilitate swallowing.
  • Schedule multiple, shorter dental visits rather than fewer, longer visits.
  • Go for checkups every 3-6 months.
  • If you wear dentures, ask the dentist to check for oral cancer and assess the fit of the dentures as part of the routine visit.
Posted on by Marta

Everything slows down

I took a look at how many posts we wrote a month in the beginning, and how many now… It’s getting less. Writing a post is becoming more and more time consuming, difficult and tedious. Meanwhile writing a post takes forever. I make many more mistakes when writing, which I then have to laboriously correct afterwards. I am much slower on the keyboard. Translating into English takes much slower. I have trouble concentrating, but at least I am not dull in the head. I am much slower in general. In all my movements. In my head I write articles, letters and messages faster. Often I lie in bed, in the morning or in the evening, and write in my head. Sitting down and doing it, however, is effortful. Slowly, I owe a bunch of people the answer. They probably think something, I have a hard time explaining why sitting down and typing on the keyboard is hard. Not too long ago, I couldn’t have imagined it myself. What is hard about sitting and typing?

I’ve already thought about, what if we can’t manage it all anymore? The blog, the Facebook group, the online meetings and the WhatzApp group. We would have to hand it over to someone more fitter before it’s too late.

Slowly everything becomes like in slow motion and it’s all hard. It’s as if my body is covered with blocks weighing tons everywhere. I compare how I was when we started writing this blog, it’s a huge downgrade. There I was walking in the woods every day with Nordic walking poles for an hour. Drove a car. And mowed lawns. While tedious back then. But making my bed is so tedious now. At that time I took the train from Munich to Konstanz to rehab and flew to Canada. I was crawling on all fours into the train, at that time and the flight to Canada was a huge challenge. That was two-three years ago. Now I think twice about going from the living room to the kitchen.

Walking and balance is enormously difficult. I benefit from the small apartment here. Here it is almost impossible to fall. But I go out less and less.

All in all, in a short time everything has become quite difficult. I am supposedly not even an aggressive course. I can hardly imagine that, I feel that my course is already rapid.

I can’t imagine how it will be in a few months, in a few years.

But I know what it means to stay active. Sometimes I don’t feel like doing anything for days, and I just lie around and stare stupidly. This quickly takes its revenge and I can hardly get up from the couch.

I sometimes torture myself – lucky that no one sees me – by vacuuming, doing laundry, or just putting trash out the door. And this writing keeps me fit in the head.

Life at a snail’s pace.

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

A man goes when he wants to go

Our paths crossed for a sad reason. And we spent too little time together.

You always had a kind word for all of us. For that I am now a little wordless.

Through you we learned how it is to go when one likes to go.

You broke the ice about a subject we never talked about, but which is a subject for all of us.

I have been trembling with you inside since I knew that you wanted to leave. How it may be – I have tried to understand. Because I follow you slowly but surely. How it may be when you have two weeks, when you have ten days, one week left.

On the one hand we are all sad and a bit horrified, but envy you for your courage. We envy you because you are free of the torment.

But we all miss you. Have a good trip Martin!