bashamphotoI was diagnosed when I was 19 years old with Welanders, Kugelburg, Walfart Syndrome.  At that time I had a brother and a cousin with the same diagnosis.

The early symptoms were leg cramps and jerky muscles, but no weakness that I noticed.  As time went on the symptoms were more noticeable.  For about 10 years I went on about the same.

Then from about 30 years old on I began to notice a difference in the way I used to do things.  In 1983, when I was 30,  I quit playing golf because I couldn't hit the ball as hard as previous and walking up inclines was getting harder on me.  Between 30 and 40, I became weaker and steps and stairs were becoming more of a problem.  At 40, I took a job as Operations Manager with a Waste Management company.  My duties were to oversee 30 employees, paperwork, customer service and so on. One of my duties was to do truck inspections, to see if my drivers were keeping the inside of the trucks clean.  But that became one of my first problems as I had a hard time climbing up in the trucks.  And from that time on, walking started to to get to me.

I had problems walking on unlevel ground; no steps or stairs unless there was a handrail. So at 44 I decided to retire.  I still try to stay active, do a little fishing, go shopping with my wife (as long as I can push the cart) but I only walk in the stores for 15 to 20 minutes then I go and sit down.

Here is a list of all the symptoms I currently experience or have experienced:

Leg and other muscle cramps (early stages for me)
Jerky muscles
Little reflex

From the age of 30 to present:

No reflexes at all
Difficulty walking up steps or stairs (impossible without a rail)
Cannot run
Cannot stand on tip toe
Choke
Hard to swallow
Excess saliva
Now I have to have assistance to step up a 4 inch curb or step (this can be a cane or anything I can push up with)
Stumbling and falling
Cannot walk on uneven ground or inclines

There are 4 (I think) in our family with this disease:  myself, a brother and 2 cousins.  All were originally mis-diagnosed with Welanders.  In 1997, I went to a doctor in Indianapolis, who took a blood test and confirmed that I had Kennedy's Disease.  I called my cousin and he had the blood test;  it came back as KD also.  Sadly, my brother passed away a few years ago at age 59 due to respiratory failure.

My wife, Marcia, and I have been married for 27 years.  We have one daughter, Sabrina, who is 22 years old now (and may I add, quite an attractive young lady).  Marcia and I found out that I had a muscle disease about 10 months after we were married.  So far she is handling it o.k.  She is a very wonderful lady.  She does a lot of the things for me that I now have trouble doing.

If you have any questions that you would like to ask me feel free to email me. These could be personal questions also, I don't care.  But I would rather do this on a one-to-one basis.