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Living with KD

Stories

Personal Stories of Individuals Living with Kennedy's Disease

Each of the following individuals lives with Kennedy’s Disease. They’ve generously shared their personal stories to help others gain a deeper, more personal understanding of the condition. We are deeply grateful for their openness, courage, and willingness to inform and inspire others through their experiences.

Jerry Hamblen

I am Jerry E. Hamblen born in 1943 in Indianapolis, IN

My family had a machine shop. I was a journeyman Toolmaker by the time I graduated high school then joined the Air Force in 1961 where I became an aircraft and jet engine mechanic. Except for having larger breasts than I preferred nothing remarkable happened until 1978. A friend had a new boat and wanted me to water ski with him. Having done this lots of times I found after getting on top of the water I was crouched on the ski and unable to stand up. I saw several Dr’s who thought there was a problem and referred me on and on until a Neurologist diagnosed me with A.L.S. A year later after monthly EMG’s I went to the Cleveland Clinic Hospital for a second opinion. They found me atypical for ALS because, mostly my progress was very slow. They decided Muscular Atrophy was as accurate as needed.

During the next several years I continued to run my own Machine Shop while using alcohol as my medicine of choice. I never to this day have had pain except for falls.

In 1981 I quit drinking, in 1982 I quit smoking & retired to the FL Keys where having a Captains License. & a Commercial pilots License I decided to do whatever allowed me to live a good life as long as possible.

When my brother Richard got the same symptoms I joined him in a visit to Mayo Clinic in Jacksonville[1988] Where the Neurologist took muscle and sensory nerve biopsy’s and suggested SBMA although the Clinic diagnosis was officially Muscular Atrophy. At this point I could still walk short distances on flat ground and only used a cane part time.

In the mid 90’s an MDA Neurologist prescribed AFO’s as I had foot drop in my Left foot. These really improved my walking as they allowed a much longer stride and allowed my toes to bear weight. Falling less was the best bonus.

To this day I am convinced falling will end my life before any disease, so I add use a power chair and safety rails as much as possible. In the past year I added Toilivators {a 3.5" riser} to our toilets. I amazes me how much things like this improve everyday life.

My wife of 25 years, Mari & I now live in a house we had built on a small lake with no steps anywhere. She is very helpful & understanding.

At this time I have very little upper body problem, ear ringing and hoarseness with nighttime choking occasionally being attributed to Acid Reflux. I have muscle wasting between my thumb & index finger on both hands. My lower legs and feet are very wasted although the powerchair has made this more an inconvenience than a problem, as I can still do anything I want, if time and method are not a problem.

Medical Information

With Kennedy's Disease being a very rare disease. Medical concerns can arise. The KDA has put together a section of resources that addresses some of these concerns that may arise for those who suffer from Kennedy's Disease. This includes surgery concerns to Covid vaccination guidelines to disease management guidelines. To access this Medical Information page, click here.

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