What does MSA mean for (caring) relatives?

In 2017, my husband had the first symptoms – slight balance problems and his speech was sometimes a little slurred. At the time, he was still very sporty and his hobbies included hiking in the mountains, cycling with friends and motorcycling. Then he fell off his motorcycle for the first time – thankfully while standing up – he simply couldn’t hold it any longer and crashed. He became increasingly unsteady in the mountains. His first visit to a neurologist in 2019 – various tests were carried out, including an MRI of his head. However, the images were not looked at at all, only the radiologist’s findings were read: everything was age-appropriate (what’s wrong with the wife?). Over the next few months, his balance problems got worse (neighbors thought he was drunk), his speech became slurred, his handwriting changed dramatically and became increasingly illegible. Somehow I had a very bad feeling and decided to give up my store.

On the recommendation of our family doctor, a new appointment in March ’21 at another neurology practice – this time I was there. On this day, my husband had an extremely bad day – what luck, I thought, that someone would finally see and hear it. Various tests and a new MRI suggested that it was a disease of the cerebellum. He was admitted to the LMU Munich in June ’21 for further clarification. I wasn’t allowed to visit him because of corona. After a few days, I received a call from the professor on the ward, which completely blew me away. I had never heard of MSA and hot cross bun signs before. I was told what this disease means, that there is no treatment, that my husband has already lost a lot of nerve cells and that this is the reason for his premature ageing. I was simply shocked and couldn’t say anything more. A young female doctor explained to him that he would have to be prepared to move house if necessary, or that alterations would have to be made for the disabled. Is there a living will? Can things be notarized?

After the diagnosis

I immediately contacted the care insurance fund, applied for a care degree and GdB and somehow it worked. For weeks we were just in shock, not a day without tears. The worst thing for me was explaining it again and again to all my family and friends. I cried myself to death every time, and it still gets me down to this day.

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

Klaus has aged 15 years in the last year. His walking distance is very limited, he has had a bladder catheter since October and in December he had urosepsis, which unfortunately worsened his condition.