Duke ALS Clinic Update – My fourth visit
August 24, 2010
Diann and I traveled the 710 mile round trip to the Duke ALS Clinic in Durham, NC for the fourth time. Ole Blue (our new 1999 Ford van) ran perfect….no incidents! It actually was a beautiful trip though the Smokey Mountains on I-40. We drove there on Monday and drove back on Wednesday.
We met with Dr. Bedlack and his staff on Tuesday. First we met with Fay Tripp, the occupational therapist who gave me a prescription to have a “resting left hand splint” made for my left hand to try to keep it stretched as often as possible.
Beth Silberman, the physical therapist, noticed that there was too much air in my seat cushion on my Permobil power chair and made the adjustments. Wow, is that a lot softer on my butt! She also got me a prescription to get a lighter weight mesh sling for my Hoyer lift which should make it easier for Diann to get it around me prior to transferring me. Dan, who works with the Permobil chairs came in and adjusted my head rest. This was the first trip to Duke that I was in my power chair, which was a good thing so they could make the necessary adjustments. Let me tell you, the ride home was a lot more comfortable on my butt than the ride going there. Ha!
Amanda Johnson, the Pulmonary Therapist, ran the normal breath tests on me that she always does. Unfortunately the tests showed that my FVC (forced vital capacity) percentage has decreased from 53% predicted in May to 40% predicted this time. Amanda also increased the pressure on my BiPap and eliminated the ramp so I instantly get the maximum pressure right away instead of it taking time to build up to it.
Dr. Bedlack and Emily Choi, who is working on her fellowship in neurology, came in to talk with us after getting all the input from his staff. He told me with my decreased FVC I need to be very careful about being around anyone who is sick. My lungs and diaphragm are at the point that I would have a very hard time fighting any infection. Again, he told me that I have a much accelerated case of ALS. He said there are not set patterns to this disease…I may continue to decrease my FVC or I may plateau. I did ask him about the stem cell clinic that they are currently studying and now have their 8th patient participating in. He said everything looks really good, but it will be a few years before anything can be conclusive.
I truly believe that God has given me this horrible disease to deal with as he knows that in some way I can make a difference. I can get the word out to all of you to make you aware of this disease (a disease that most of you have never thought much about or knew anything about, or maybe never heard of it or it’s devastation before) and that you can spread the word that ALS can strike anyone of you and that we need more donations for research and patient care. A disease that has no cause and no cure is unthinkable in this day and age!