Sunday, August 10, 2008

My Diagnosis

I was diagnosed with ALS in April of 2006.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive wasting away of certain nerve cells of the brain and spinal column called motor neurons. The motor neurons control the voluntary muscles, which are the muscles that allow movement. ALS is a progressive, disabling, usually fatal disease. Walking, speaking, eating, swallowing, breathing, and other basic functions become more difficult with time. . In most cases it does not affect intellect, memory or the senses..The life expectancy of an ALS patient averages only two to five years after diagnosis. There is no known cause, prevention or cure for ALS at this time. In the United States and most other parts of the world, 1 to 2 people per 100,000 develop ALS each year.

It was sometime in the summer of 2004 when I was walking my dog that I noticed my left foot would slap the ground as I walked. it wasn't long after that I began experiencing foot drop and tripping alot and started having balance problems. Dec. 2004 after seeing an orthopedic doctor because of hip pain, I had x-rays taken and everthing was normal. He did some reflex testing and told me they were abnormal and suggested I see a neurologist. After 3 months I was able to see a neurologist. He did a complete examination and ordered all kinds of tests. MRI, blood work, lumbar puncture, and a EMG. His original suspicion was that I had MS. None of the test results proved anything conclusive. Then he ordered a CT scan and mylogram which came back negative. He just labeled it as idiopathic spastic paraplegia. He suggested waiting six months and redo some of the tests or I could get a second opinon. I opted for the second opinion. August 2005 I got an appointment at Hershey Medical Center with a neurologist specializing in ALS. He ordered some more tests and did an extensive EMG which basically revealed the same thing, spastic parplegia. There wasn't sufficiant evidence at that time to prove it was ALS. To make a definite diagnosis for ALS, you need to have both upper and lower motor nueron disease. He said I should come back in three months to see what changes I had or if I continued to progress. After six months of montoring my progression, he did another extensive EMG. The test results were convincing enough to rule it as ALS. April 6, 2006 I had a diagnosis ALS.
Even though I suspected that I had ALS because of all the research I did on the internet, hearing it from the doctor was devastating. Needless to say the trip home from Hershey was an emotional one. We cried, we wondered what do we do now, to silence. I knew from that moment on our lives were about to change forever. I had to leave my job because I struggled to do even the simplest of tasks. Within a year I went from using a cane, then a walker, to a power wheelchair. To date I cannot walk, go up stairs, need help with bathing and dressing.
This disease will eventually take away my ability to do many of the activities of daily living we all take for granted. Despite the devastating nature of this disease, I will not lose my faith in God. I refuse to let ALS cause me to become an angry or bitter person. I will use faith, hope, courage, love, and laughter, to help me make it through each day. I know he will provide me with the strength and courage to take me though each day.

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