Marek Babik, Born 1950 - Poland
I am 63 years old. I was diagnosed in 2009 after another stay in the hospital. This time in the Clinical Hospital in Warsaw, after numerous tests I was found to have a motor neuron disease. But after this stay, I received a referral for a DNA test to the hospital and then found out that I was suffering from a genetic disease known as Kennedy's disease or "spinal bulbar muscular atrophy" which is an incurable and progressive disease - very often mistakenly diagnosed as ALS. From that moment on, I began my other life
The symptoms of my illness:
1) Large muscle fatigue.
2) Difficult to get up from a squatting position yourself - rising with difficulty into the hands of supporting,for example, the arm of the chair, but the seat height is a minimum of 60 cm, with a lower height and without the help of other people I can’t get up.
3) Speech is diffucult.
4) Muscle wasting in the legs and hands .
5) The weakness of the hands, the general lack of strength in legs and arms.
6) The toilets needs to be raised in height.
7) Difficulty walking
8) The disease progresses overtime.
The tests I have had done: EMG - several times, muscle biopsy, nerve biopsy,spinal marrow biopsy, ENT research, spirometry
CPK - current value is high, X rays of the brain and spine.
There is no cure for this disease, the only solution to slowing down this disease is rehabilitation , which more and more need to wait in the NFZ , I mean stationary rehabilitation, because only this for me comes into play. Now, I ride mostly to Konstancina Lake , a special means of transport for people with disabilities. I limit my stays to six weeks. The disease progresses, because two years ago in 2011, I could move with the grace and travel by public transport, shop, etc. Now I'm tied to a four-wheeled walker with a seat which I use in the event of weak legs, I can sit back, relax and continue several meters to go.
I am looking everywhere for assistance and a cure. I have a friend who helped stem cell transplants, but these treatments are abroad in China. Private trips are very expensive. Even though I would have qualified for it, I can not afford . After that, I do not know if it would have helped. And in Poland, no one in this direction does not. This disease is not known to doctors with different academic degrees. This confirms my stays in private and public medical practices. Do their best to publicize this problem with my disease and all rare diseases. I have a lot of determination , but that my fight is hopeless . But I hope because hope dies last . Waiting for a cure that przyhamowa?o to the development of my illness , which every day progresses and difficult for me to my everyday existence , and it really is slowly dying.
Note: This text was translated using Google Translate so the exact message may differ from the original document. Here is a link to the original document in Polish.