Veterans with Kennedy’s Disease

The KDA received a question the other day from a man with Kennedy’s Disease who lives in Canada.  He had been in the military for twenty-two years.  During this time, he began to show symptoms that were initially diagnosed as Parkinson’s Disease.  Later they said that he was just “out-of-shape” and forced him to perform extra physical training.  This increased physical activity caused the symptoms to accelerate and he was eventually excused from all physical activities.  Somewhere along this timeline he was diagnosed with ALS.  He eventually found the KDA website and was finally diagnosed with Kennedy’s Disease.


Recently, the retired serviceman saw that a veteran could receive benefits if the person had ALS.  Unfortunately, there are no provisions for Kennedy’s Disease.  The man asked two questions.  (1) If we knew of anyone that was retired from the service that had Kennedy’s Disease?  (2) Is there any connection between ALS and Kennedy’s Disease.  The man feels that if he can prove a connection, he might be eligible for benefits.



Unfortunately, I was not aware of anyone who had served in the Canadian military that had Kennedy’s Disease.  That is information that is not asked for when someone joins the KDA.

I also mentioned that since ALS is the primary misdiagnosis for those of us living with Kennedy's Disease, the link (between the two), in my opinion, between the two is very strong.  I can easily say that 50-70% of us are originally misdiagnosed with ALS.  I have always called Kennedy's Disease the “poor man's ALS” because our progression is slower and life expectancy is close to normal.

ALS affects the upper motor neurons, while Kennedy's Disease affects the lower motor neurons.  However, many of the symptoms are closely related and that is why it is often misdiagnosed.  (Note: It wasn’t until the late 1990s that a conclusive test was made available for Kennedy’s Disease)

I believe this might be an opportunity, however, … something that he needs to investigate with the Veterans Administration.  There might even be a veterans association that can provide some advice and counsel.  They might also be able to recommend an attorney that has experience with these type issues.  This could open the door for several men living with Kennedy’s Disease to receive veterans' benefits should it be approved.

Most often, these matters are only resolved after much pushing and prodding by those impacted by the condition.  If you are aware of anyone with Kennedy’s Disease that is retired or forced to leave the military because of this condition, please let me know.  I would like to make contact with them and look into the potential opportunity of adding Kennedy’s Disease to the V.A.’s list of health issues where benefits are available.  Thank you.