Multi System Atrophy is a rare and disgusting neurological disease, rapidly progressing, incurable, and can attack anything the body “does by itself”. We think that the people who have found here, have already read lots of scary texts and we don’t want to list the symptoms, we don’t want to predict when you will have to use a walker or wheelchair, nor do we want to think about who will live with this corrosive disease for how long. I (Marta) imagine that in my head now a “Little Asshole” lives, who turns off the lights from time to time. Yes, it’s a brain disease, but we don’t get muddy in the brain, we experience the breakdown consciously – which isn’t necessarily better. But if you have questions about the disease, write us and ask your questions. We are happy to help, if we can.
We are of the opinion, that there are enough horror news about MSA on the net and we don’t want to do the same. Of course everything that is written on this pages is only our opinion and cannot be transferred to other patients and to the own person. We know, that this disease is so individual how many patients there are. Also our methods, and way of life, do not replace medical assistance and it is not “State of the Art” – we just simply do it this way. It is a very serious disease, for which everyone has to ask his or her doctor questions. What works for us, or is feasible, doesn’t have to work for others.
We just want to show that a little fighting is worth. And write our thoughts from the soul. That sarcasm and laughing about oneself, sometimes helps to master everyday life. And perhaps newly diagnosed patients, will find a little help, distraction, motivation and distance from the sites, that are otherwise very serious about this disease on the net – which certainly must be. You may have other problems than us and the others, but don’t focus on what might happen and what is predicted and expected! Focus on one exception – we have seen some of them that contradict the forecasts and figures.
People who have acute problems and mental stress should call 112 and ask for professional help. We are only two patients and can certainly not help you in crisis situations.
Wikipedia entry about the disease: https://en.wikipedia.org/wiki/Multiple_system_atrophy