Muscles Are Getting Weaker And Weaker
By Denise Dollinger. Erich Maurer is affected with Myotonic Dystrophy. He wants to offer support to thouse living with the same disease.
Basel. The Bernese Erich Maurer was a teenager, when his mother was diagnosed with Myotoner Dystrophie. «Even though I should have known that this genetical disease migh concern me as well, I fought it off vehemently», says the 50 years old man. In his twenties, when he first got problems with his senso-motoric skills and experienced arrhthmetic heartbeats more often, he decided to undergo a genetic test and the result came back postiv.
He was affected with this disease. «I was still not ready to deal with this challenge and decided to deliberately ignore the facts», he says. His strategy was more or less successfull over the next twenty years and he developped his very own survival strategy. «I was experiencing this permanent leaden weariness and I fell down countless times as my muscles gave out», he remembers. «In order to hide these deficits I just plunged in my job and tried literally everything to avoid facing reality.» Eventually this strategy did no longer work. The big breakdown happened in 2013 after a discussion with his boss, who had encouraged him to take it slower and to better consider himself and this disease. «I had to face the facts.»
A constant interplay. Maurer started to do some researches. «This was a very important process for me. At the same time it just threw me into some sort of a downward spiral of financial fears, a lack of perspective and disorientation. It all led to the same conclusion: Sooner or later I am going to die from the symptoms of DM.» Eventually he came across an American Website dedicated to individuals living with Myotonic Dystrophy. «This was a real turning point. The point where I gained access to myself and was finally ready to deal with reality», he remembers. «Information in Europe used to be more deficit-oriented at this time. But this American website offers valuable advise and connects individuals who are affected with the same disease with a greater community.»
Myotone Dystrophie (DM) is a very complex genetical disease that progresses degeneratively. The most common symptoms are caused by muscular tissues such as Myopathy, Myotony and Atrophy that is getting worse over time. DM also affects many other systems of the body such as the heart, the respiratory- and the GI-system. The disease can also affect cognitive functions, the personality and the vision. There are two known forms or types of Myotonic Dystrophy: DM1 is the more frequent type and the one with the more severe symptoms. DM2 is a milder form or type. There are approximately 360 individuals in Switzerland living with Myotonic Dystrophy. Find more information about Myotonic Dystrophy and about this selsupport-group at:
There are approx. 34 individuals living in Nortwest/Switzerland who are affected with Myotonic Dystrophy: A neuro-muscular disorder with a typically degenerative progress (see box).
Maurer knows that there is no cure for this disease. He also knows that his health status will aggravate over time. But he has no fear of death. «My biggest fear right now is, that one day I won't be able to drive a car anymore because of my weakening muscles. This means a huge loss of freedom for me.» Due to the muscle-waste in his lower legs he uses a cane and is wearing ankle orthoses. This, to give him stability and prevents him from stumbling. To show himself with this aids in public has not been easy at the beginning. Now they just belong. Despite of a weekly physio- and occupational therapy treatments the muscles of this 50 years old man are getting weaker. Recently he started experiencing neuralgic pain.
Mutual Support. On less good days, Maurer cannot manage to open a bottle and has problems unlocking a door. «This can drive me up the wall,
makes me feel helpless and frustrated», he says. When he manages to peel a carrot or to walk steadily, he calls this a good day. «On such a day
I am making plans for my future.» It was a constant interplay, he says. Food and eating is the target of his main concern at the moment. Prepairing
a meal and cleaning up afterwards means an immense effort. And his swallowing difficulties (Dysphagia) seem to progress rapidely. «This is scary because I don't know what cold happen if there is nobody here to help me when I swallow the wrong way. This takes away the pleasure of eating
and reduces my feeling of hunger.» On one of his «good days» he had the idea of building up his own selfsupport-group with the help of the Swiss Association for Neuromuscular Diseases. This group offers a platform for affected individuals to share their experiences and to enjoy spending time together. «Also important to me is the possibility to support each other and to learn together», he says. For example of how to work together with
doctors who are typically less informed about this disease. In addition, symptoms of this disease vary greatly. But there is one thing that we have in common: «As the muscle mass decreases, we have to do as much as we can to maintain the muscles we have. It is not possible to get back what
we have lost.» Erich Maurer keeps it positiv and he spends his time with activities that had less room in his earlier life. «This is the liberty I am
enjoying and also the reward of my present life», he says.
Source: Basler Zeitung September 20th, Denise Dollinger