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. 

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