In times like these

This report comes from my brain, adapted from the report of Dr. Lawrence I. Golbe, eminent clinician, head of the science department at CurePSP, USA.

Grade is a non plus ultra topic and vaccinating or not vaccinating is dividing the nation. I know I am not making friends with my views now, many are simply contra because they want to be against something, but the days of acceptance are over for me, and I am expressing my opinion simply because I feel the need to do so, and because I have the platform to do so. 

Since I have latently always in the back of my mind “not to come to the hospital now”, because there the beds are filled with non-vaccinated patients, patients in some states are flown out because they have no more free space, since triage and the so-called “soft triage” is applied, yes, since then I feel affected, since then my understanding towards non-vaccinated people has definitely decreased. Such a choice is definitely not personal. In addition, I have a hard time with the hair-raising and really abstruse stories that are spread. In order to do this, I find it difficult to understand an MSA patient who does not want to be protected. Because I assume, in case of a complication, with a rare disease, we would lose, admitted to a hospital.

I have lost a close family member and acquaintances to this disease, I know people who are struggling with long-term effects, so the question is unnecessary for me, whether this disease exists or not.

What I also often hear is that many do not want to be vaccinated for medical reasons. The only contraindication is a severe allergy to one of the substances received in the vaccine. A severe allergy sufferer (who always has to carry antihistamines) had herself vaccinated in the hospital, prophilactically incl. with hospitalization for observation. Nothing happened.

Of course, something can always go wrong. If I go on the street, there is also the possibility that I will be run over by a bus.

Another thing to consider is that in case of bedriddenness (ventilation, intensive care…) we would lose a large amount of muscle mass and we would not be able to build it up again. The lost muscle mass would be important in case of balance problems or any other muscle effort, like secretion management or change of position in bed.

As someone from a medical point of view puts it: people with Atypical Parkinson’s Syndromes are particularly vulnerable to the coronavirus and should take protective measures sooner rather than later.

COVID-19, the type of coronavirus causing the current pandemic, infects the entire respiratory system – in mild cases only the nasal passages (rhinitis or “sniffles”), in moderate cases the bronchi (bronchitis), and in severe cases the lungs (viral pneumonia). In either case, a lot of secretions need to be cleared, and people with Atypical Parkinson’s Syndromes have difficulty doing so.

Atypical Parkinson’s Syndromes affects the ability to swallow or cough up secretions, allowing them to drip into the trachea. This can turn even a cold into pneumonia. A second and probably more important problem is that when pneumonia occurs, forceful coughing up of lung secretions, which is essential for recovery, is impaired in Atypical Parkinson’s Syndromes. This allows the secretions to fill the spaces in the lungs where air should be flowing, reducing the oxygen supply to the tissues. An even more dangerous consequence is that the inflamed lung tissue is a good place for bacteria in the inhaled air to create a second pneumonia in addition to the first, called a “superinfection.”

Caregivers of people with Atypical Parkinson’s Syndrome should also exercise more caution than others their age. This is because the disease can also be transmitted by people who are infected but do not yet have symptoms. 

Bottom line: people with Atypical Parkinson’s Syndromes are more susceptible to pneumonia caused by coronavirus than the average population and less able to cough up the secretions needed to clear pneumonia. Therefore, patients and those close to them should be much more cautious than others, avoid crowded places, avoid potentially contaminated surfaces, wash their hands, and follow precautions recommended by health authorities.

This advice applies to all neurological conditions to the extent that they affect the ability to control one’s own respiratory secretions.

(As of March 2020)

So take care and protect yourself!

When it gets dark outside – and slippery

It’s here. The dark season and the first snow have also fallen, which makes life even more difficult for us. Orthopaedists and accident surgeons have a lot to do every winter, as soon as the first snow falls and it becomes icy, the number of broken bones rises sharply, which can be particularly devastating for us. Shoe spikes are one possibility (look up at Amazon for shoe spikes), the so-called anti-slip soles. They can be attached to any shoe and provide additional protection against slipping – they are only ugly. Especially older people and chronically ill people (we) often fall in winter and suffer serious injuries, from which they recover only with difficulty or not at all. 

People who use a walking stick know that the contact surface can be easily slippery, especially in winter and wet conditions. Spikes for the walking stick are available in stores, which are even paid for by the health insurance. 

A supply of vitamin D and a calcium-containing diet strengthens the bones, but I prefer to stay at home when it’s slippery! In our case, the healing will probably take longer, so don’t risk anything. 

Take care of yourselves and for everyone, a slippery and fall-free movement this winter!

What the dark season also manages: making me more inactive. In healthy years this time I liked to hang out at Christmas markets, go to the movies with popcorn and beer, go to the sauna or visit exhibitions. Of course, almost all of this could be realized with appropriate accompaniment and precautionary measures, but do I want that? Is that amusement or stress then? Rather at home, in front of the fireplace (if there is one) or in front of the TV with tea or cocoa instead of mulled wine, which I can’t tolerate any more.

This weather also makes me listless and sensitive. Otherwise in the year I was always busy and did balance exercises, went out with Nordic Walking poles, did my speech therapy exercises daily, swing exercises, yoga (as best I could). Now everything is too difficult for me. And the bad thing is, I’m not even sure that it’s seasonal. Is that why I think I’ve taken a step backwards? My balance is really limiting. 

But after the usual chores, everything is so hard for me and every atom of my body screams “Sit down, lie down” – or is it the “Little Asshole” who now lives and rules in my head? Every movement costs me conviction. I still live alone (which is good for me and I would like to keep this way for a while) and keeping my two-room apartment clean is suddenly exhausting. Vacuuming alone is like digging a ditch, and I have to sit down every few minutes. I wheeze and consider every little movement if it is necessary. Accordingly, my once spotlessly clean apartment suffers under this and everything becomes semi-clean… But by the time I have done these everyday things, that used to run along with it, like cleaning, shopping, washing, cooking, the day is also over, and it is especially hard for me to lift myself onto the treadmill or something like that.
In addition, I have appointments almost every day, physiotherapy, doctor’s appointments, speech therapy and others. Also that everything takes three times as long due to my poor fine motor skills.

What’s more, I am like an amphibian, with particularly low blood pressure when standing, with icy hands and feet, cold nose. 

How does all this affect my mood? Nobody wants to know that. Now it becomes important that I can no longer drink mulled wine, because I would like to get drunk and then go into deep winter sleep, and only wake up at Easter. Maybe a little later than that, we had already some snow to Eastern.

Of course you could say “Be thankful, that you can still do this and that”. But I am not thankful. I know that things will get worse, but I still hate that I can’t do “this and that” anymore, like a carefree walk in a fresh snow. Is that too much in ask?

Oh well, and we’re also careful not to bring an infection into the house!

So it remains to endure and to wait, that it remains a little longer brighter, that the dreaded snow chaos will be missing and that it goes a little uphill again with the weather, and the universe breathes into one life instead of these dark days. Yes, I have never been a friend of winter, in another life that time I have happily packed my suitcase and spent the holidays under palm trees.

A cold

This stupid acclimatization in the flights! I’m sure it comes of that! The plain was cold like a fridge…
I’ve been dragging this for days now but since yesterday it’s clear – I have a cold. Everything is worse, balance, fine motor skills. I just want to crawl away, crawl into bed. And I hope that afterwards everything is “normal” (MSA-normal) again, I had already thought the disease made a “push”. But this disease doesn’t work at all in deterioration. When I had PT the day before yesterday, I wondered why everything was so much worse.

Nose runs, head is foggy… I hope it will be gone by Thursday, I have to go to rehab…

I dope myself with high-dose Echinacea and cover myself on the couch. So unnecessary!