My husband was diagnosed in June 21. The diagnosis of MSA C completely shocked us. Soon after, we heard something about a promising new substance that was soon to be tested on patients in a trial. The basic requirement – the patient’s ability to walk. Would not have been a problem 15 months ago. We had so much hope. Unfortunately, studies are postponed and postponed again…. In the meantime Klaus has no balance at all, walking outside – even with sticks – is almost impossible because he constantly tips over to the side. The electric wheelchair is ordered (also there it hangs, is already approved by the health insurance, but the medical supply house has such a large pile on the desk – we must wait, because of course nobody can be preferred). MSA patients are running out of time while many regulations have to be met. One feels like a donkey with a carrot held in front of his face – but he doesn’t get it.
That means announced studies, like for many others, are likely to come too late for us. There it is again – the anger about the system, the regulations that exist, and the feeling of powerlessness. To be simply at the mercy of it all. Many patients and relatives feel the same way we do. There remains physiotherapy, speech therapy and complex therapy. In their distress, many patients try all kinds of nutritional supplements and other supposed miracle cures for expensive money. But so far I have not heard from anyone that it really helped. Only perhaps the manufacturers.
Today I wish we had never heard of drug trials. Time is running out for all MSA patients. With these announcements, there is a spark of hope that people cling to and the disappointment is great when it doesn’t work.
One day, people may say, “Remember? There was a time when nothing could be done about MSA. I hope it will be soon.