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Living with KD

Personal Stories

Charles Rannells, Born 1927 - WV, USA

Charles Rannells, Born 1927 - WV, USA

I was born on October 9, 1927 in Hampshire County, West Virginia.  I grew up in Martinsburg, West Virginia and went into the Air Force.  After getting out of the service, I went to work with the United States Department of Agriculture.  I was a Federal-State Inspector of fruits and vegetables until 1955.  During the time of inspecting, I was most physically fit and worked long, long hours.

In 1955, I transferred to the Federal Government as a Market News Reporter. I traveled all of the United States and finally settled in Pittsburgh, Pennsylvania, covering the Pittsburgh Wholesale Market.  While doing this job, I walked 4-5 miles a day in all kinds of weather - year around.  This market was located by the river and it was blustery and cold in the winter.  After going to work at 5 a.m. and covering the market until approximately 10 .m.or so, I walked the 6-8 blocks to the Federal Building where my office was located.  I stayed in Pittsburgh from 1963 until retiring in 1982.  During this period I had no idea that I was not a healthy robust normal male.

After retiring, I returned to Martinsburg, where both my wife and I are from.  We both still had living parents at that time and decided to return to be of help to them.  We purchased another home which needed work and I thoroughly enjoyed updating that house to make it our home.

In 1989, I started getting weak in arms and legs and started losing weight.  My left shoulder seemed to be the weakest part of my body at that time.  I went to our medical doctor who sent me to an Orthopedic doctor.  At first, he thought it was a Rotator Cuff, however, he finally ruled that out.  I had no pain in shoulder at all.  He then sent me to a Neurologist who ordered a MRI.  I did that and nothing showed.  I then went about my business for approximately 1-1/2 years.  I kept getting weaker and it finally got to the point I just could barely use my left arm or shoulder.  I finally gave up and went back to the Orthopedic doctor who couldn't believe the deterioration since he had seen me.  Again he referred me back to the Neurologist.  He ordered another MRI and a test (I have forgotten the name) but they put many many needles in your tongue.

I had a return appointment with the Neurologist on July 31, 1991.  He told my wife and I he had good news and bad news...  The bad news was he felt I had a form of ALS, however, he also strongly felt it was related to but not true ALS.  He asked if we would be interested into going to John Hopkins in Bethesda, Maryland to see a Neurologist there...  We said definitely.  They made me an appointment for early October, 1991.

I was to check in at 8 a.m. and then possibly do some MRI's at 1 a.m. the following morning.  I had a barrage of tests, many doctors, gave lots of blood and yes, they still wanted the MRI's.  They did 3 MRIs that night.  They had told me at John Hopkins that day that they were certain it was Kennedy's and they had just recently learned about this. They explained that it is a form of ALS but progresses much more slowly.  I went back to John Hopkins a couple of more times and in October, 1992, they formally diagnosed me with Kennedy's Disease.  At that point most of my problem was
still in my left shoulder.

I have a brother who is 7 years older than myself and he had been diagnosed with ALS by a local doctor in 1989.  When they learned of this at John Hopkins, they asked if he would come down with me.  We took him down and they tested him and, yes, he too had SBMA.  He chose not to travel back to John Hopkins again.  As previously stated, he is 7 years older and he is still living.  However, just 2 months ago he went into a nursing home as his wife had a stroke and he is to the  point he can't get up or around on his own.  He seems to be deteriorating pretty rapidly all of a sudden.  His speech has been affected for years. His speech was slurred and has become much much worse.  He never had a problem swallowing until just recently and eating seems to be quite a problem for him.

My speech is just now becoming somewhat slurred but nothing compared to him. My swallowing problems started a few years back and got to the point I just couldn't eat and grew too tired when I kept trying so hard to get a meal down.  Dr. Rothstein at John Hopkins referred me to a speech pathologist that did some testing and she worked with a Gastrologist.  The two of them together performed some tests and the Gastrologist suggested a throat dilatation, although he had never experienced doing this with a SBMA patient.  He did this last February, which immediately improved my eating by at least 60-75%. He explained he could keep performing this on my throat as long as there is some good muscle left there.  My eating is now starting to digress again.  I plan to go back when weather improves in this part of the country (spring)
and have another dilatation performed.

In 1994/95, I participated in an SBMA study in Pittsburgh, Pennsylvania for approximately 15 months.  This was a blind study (placebo/testosterone shots given).  This study was not really long enough in time due to the slow movement of SBMA, however, it was felt at the end that the testosterone was definitely not doing any harm and in fact may prove of some value.  I chose to stay on the shots which my wife gives me weekly.  We choose to think perhaps it has helped and has kept me on my feet well enough to get around some for this long.

I had a light stroke in November and my brother just had a light stroke in December.  I have no idea if this goes along with SBMA or not.  It affected my eyes by leaving a black blind spot in each eye.  They do think in time this will improve.  I can still get around on my own in the house and a very short distance outside.  I have a scooter which I use around the
neighborhood and also take if I am going to be outside a lot when we go away.  Otherwise I use a wheelchair when shopping with my wife.  I have very poor balance and have fallen quite a bit but luckily have not broken any bones.

The house we originally purchased in Martinsburg when I retired had a large private attached apartment in back.  Our house had steps and I had gotten to the point that I could not do steps any longer. We bought a villa about 8 miles outside of town.  It is all on one floor and an open floor plan with only one step up from the street.  A wheel chair can be easily ramped in for me.  We moved here in May 24, 1999.  We really hated to move out of town but this was the closest thing we could find to meet out needs other than building a custom house. I keep active and meet with friends I've known since being in school down at the mall for coffee.