Thursday, August 13, 2015

Finding a neurologist is not an easy task

My neurologist retired and I have been hesitant in finding a replacement. For some reason, I just wasn’t in the mood to go through the process of starting all over, especially with someone who is not familiar with Kennedy’s Disease.
When my wheelchair representative and my GP both recommended the same doctor, however, I thought what the heck and made an appointment. The week before, I went through my records and copied my DNA test, diagnosis letter from my neurological tests in 1996, my most recent blood test results, my fall history, the results of my last physical, a synopsis of my current condition and concerns, and copies of the current clinical trials.
Dr. Alpers at the University of Tennessee Medical Center is well known for his work with ALS patients. He only has one other patient with SBMA. Once again, I was called a ‘rare bird’. He felt the 1-in-40,000 was an optimistic number. Dr. Alpers was thorough, knowledgeable, professional, caring and friendly.
During the examination, he commented he wanted to baseline my current capabilities and
condition with a few tests (blood, pulmonary, etc.). One series of tests for swallowing I wasn’t interested in and he didn’t try to talk me into it. He was also interested in the current KD clinical trial and asked that I keep him up to date on any findings.
At first, I wasn’t certain whether his work with ALS patients would be beneficial. By the end of our 1½-hour session, I was convinced I found the right doctor. Since, he sponsors the ALS Clinic in Chattanooga; he invited me to attend the next session. He said I could meet with Occupational and Physical Therapists, Dieticians, and other specialists during the quarterly clinics.
We also discussed my current capabilities and mobility equipment. He asked about my wheelchair and if it met my needs. He also wanted to know if I needed anything to make life easier. When we finished our session, he said that if I needed anything, don’t hesitate to call.
So, what I had been putting off for some time, turned out to be a positive experience. Next week I have my pulmonary test. After I attend the ALS Clinic in mid-October, I let you know how that went.

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