I am Sylvie Mersch, aged 50, and I was 44 when I was diagnosed with Parkinson’s. I live in Luxembourg and have been married for 30 years with two sons, 26 and 28, and a daughter who is 23. One month after being diagnosed, my grandson was born and being a grandma helped me enormously to accept and manage the condition better.
For many years before, I experienced pain in my shoulders and a constant rigidity in my neck. I had an operation on my shoulder hoping that this would help. But my left arm did not relax and I started trembling and had difficulty in carrying out fine motor movements. I felt as if my abdominal muscles had disappeared. I had difficulty getting in and out of bed and the car; I felt sick, tired, as if I was in a trance, and was very stressed because I could not co-ordinate at all well. My family and friends thought I had depression caused by the unexpected death of my brother. When I received the diagnosis, I was not really shocked. In fact it was a relief to know what was wrong with me.
My knowledge of Parkinson’s was very limited so I searched the internet and read some books, but I was terrified about my future life and of becoming a burden to my family. Not long after the diagnosis, I visited a physiotherapist, Mariella Graziano, a specialist in educating people living with neurological conditions. I began to learn more about Parkinson’s, the importance of helpful movements and to understand the necessity of training the body to improve balance using various tips and tricks. Mariella also became a healthy balm for my soul, always there to help with all kinds of problems. I practice her exercises at home daily and each week I attend horse riding therapy. By sitting on the horse without a saddle and support for the feet, the muscles of the back, neck and legs are strengthened by the horse’s movements, which have a positive impact on rigidity and my equilibrium.
Having Parkinson’s did cause problems within my family relationships. After being diagnosed, I felt as if I was losing my personality, because Parkinson's was always with me and received all the attention. I explained to my family and friends that I am still the same person; I don’t want to be thought of as ‘sick’ and unable to make my own decisions or take on any responsibilities. Each of us took time to accept the new situation and a lot of adjustments have had to be made. I had to accept that I needed more help than before and my husband and children had to adjust to carrying out more tasks when they returned from work or from school; tasks that they had never been involved with before. But I now have more time to do whatever I want to do, be it working in my garden, writing poems, drawing pictures, aquarelles... so there is a positive side to living with Parkinson’s!
For the past three years, I have been a committee member of Parkinson’s Luxembourg Association and I see my mission as raising awareness and public interest on behalf of all those who wouldn’t or couldn’t speak because of losing their voice with advanced Parkinson’s. In the next few months, I will complete a big project for our Association that I have been working on for some time. I carried out interviews with 50 people with Parkinson’s and have collected their Case Studies. These very important stories form the basis of a book: LIVING WITH PARKINSONS DISEASE and my message is:
Think positive!
You are not alone…but Parkinson, he is!
Keep on fighting with great endurance!
NEVER GIVE UP!
