I am French (living in Nantes/France).  I was living in Detroit from 1988 to 1990, to build a French factory, so I speak English a bit.

Until 1998, I was in good health.  I was able to hike mountains and to run.  In fact, when I was young, I was one of the fastest players in a Football Association team.  The only thing that I remember is my legs getting tired after a long time of play, and running more than 3 miles was not a pleasure. I began to notice that my legs, arms, and right shoulder blade were becoming a little weaker.  I went to my HMO Physician and a Neurologist who first thought that I didn't have any real problem.

In 1999 my condition progressed slowly, particularly in my right shoulder and my CPK level came back high. In April 1999, my Neurologist performed an "Electronic Nerve Conduction Study" and after examination of the findings, diagnosed me with ALS, but with a 50/50 chance and told me to "wait and see".  I also had several AMG's, blood work, muscle and nerve biopsies.  He gave me the drug, Rilutek (also known as Rilusol ) to reduce the speed of the progression, but said nothing about this disease.

I was completely knocked out. In France, it is very difficult to find support or information. I was going to die. The nervous breakdown started to set in.

I have the great benefit of a loving and supporting wife.  My daughter and sons, family, and a few friends have supported me over the months.  What I cannot do myself they do for me.  And I can do nearly nothing, except to work on my computer to help two "Disease Associations", dressing the table.......that's all.

Because we did not accept the 50/50 diagnosis, my wife and I decided to meet a world specialist team ( Dr.'s Meininger, Salachas and Forestier) at the Paris Salpétrière Hopital in September 1999.  They immediately diagnosed me with "SBMA".  ( Because, on the contrary to ALS, Kennedy's Disease has no muscle stiffness and the reflexes decrease).  They checked my face and neck muscles, my arms and leg strength. They found muscular atrophy around my lips also.

I think their diagnosis is correct, they have seen this year many patients (1200 ALS and perhaps 50 with Kennedy's Disease). At the moment I keep up Rilutek drug (or Rilusol), but I have to test a new molecule at the end of this year.  I know androgens (males hormones) may be beneficial, but all therapies are considered today as experimental.  The DNA blood test confirmed this diagnosis 4 months later with 42 CAG repeats.  A Doctor told me there is no correlation between the disease severity and CAG repeat length - sometimes in the literature I read something different.  Living day after day is my new philosophy.

My main challenge is stairs and inclines.  Climbing over 10 steps is getting to be a slow process.  Carrying anything up the stairs is almost an impossibility. I have respiratory problems only with a laryngitis or a very bad cold.  When I speak too long, my voice changes and starts crackling.  In the future, respiratory virus will be a problem, so my physician thinks it is important to protect me with "Pneumo 23 injections" and also against "Grippe virus ".

Because of my back and my voice, I gave up my job as a Quality Consultant.

This year the disease has only progressed slowly, particularly in my hip and shoulder muscles.  Now, I have only few fasciculations and no difficulty  swallowing.  I have each week passive physiotherapy.  This practice suits me.   (All these descriptions are for information purposes and are not to be used for self-diagnostic -each individual is different).

I wanted to do as much traveling as I possibly could, fearing I would lose my walking ability sometime in the near future.  I have already traveled in Europe, North Africa and the U.S (New York, Chicago, Detroit and Florida).  I have never had any problems to walk, except in Crete.  In this superb island, I suppose, I first noticed symptoms. Going down to walk the San Mary Mountains gave me cramps in my legs.

Fortunately, I walk (with a stick) around 150 Meters and this year we visited Israel and Rome.  In Israel there were only a few places my wife had to go alone but in Rome it was more difficult.

Israel is very nice with a special atmosphere.  Its the most beautiful and interesting country I have ever seen.  When I came back home I was feeling better, I have not been miraculously cured, but depression had disappeared. It was something like a miracle to me.Our next challenge will be to go to California in April 2003.  We are a bit afraid to travel through this immensity in a wheelchair.

In August 2000, I received from Terry and Susanne Waite the list of individuals living with SBMA that have given their permission for their name to be shared and in a few days I found 14 other French patients.  Jean- Jacques Koenig and I (along with others) decided to organize the French Association "Syndrome Kennedy Research" see http://www.kennedyens.com and www.kennedysdisease.org too.

I have communicated with Kennedy's Disease contacts and I was amazed that most of their symptoms are mostly the same as me (especially the lower part of my back, shoulders and legs).

As Susanne and Terry said, we think ALS is the most common misdiagnosis; it is therefore very important to create an association in all the countries. Maybe the problem is how to find all those who truly have SBMA around the world, but were misdiagnosed with ALS?

So we need your help.... all of you.