We saw Dr. Bertorini yesterday. All the blood work has come back and everything was normal. Translation, there is no other medical condition that I could have, other than ALS. While, that isn't the greatest thing in the world to hear, it does mean that I can now participate in clinical trials and research. The most cutting edge research is gene therapy. The theory is that there is a gene mutation that causes ALS, outside of having a hereditary link. They've identified the gene that causes ALS, now they need to determine how to stop it. According to Dr. Bertorini, the pilot has already been completed and phase II should be starting soon. Now that I have my medical records, which have done the "rule out" of all other diseases/disorders, I can pitch myself to research facilities. That's if I want to go elsewhere for a certain trial.
Dr. Bertorini did start me on Rilutek. This is the only drug that is FDA approved for ALS and has shown to give an increase in the life expectancy from anywhere between 2 to 21 months. Thank God my insurance covers the drug, because it was over a $1,000! I also started on CoQ12 and Vit E. He increased the dilantin and zanaflex to help with the cramping and stiffness.
I meet with the physical therapist who gave me some great exercises to do with my right arm, shoulder, right leg and breathing. Her concern related to my right hand, is that it's starting to curl up and my right shoulder, which is very stiff. Her concern about the shoulder is that it will become "frozen", i.e. because my arm tends to just hang, it's pulling away from the joint, which would lead to inflammation and then "freezing". She encouraged me to get in the pool to help with the foot (the toe drags). For the breathing I have to take deep breaths and cough 4 times. This will help clear or keep my lungs clear. Hopefully, these exercises will help with the right arm/foot. If not, she'll fit me for braces. I agreed with her approach to start with the exercises, because if we went to a support device that does the work for the muscle, then I'd lose that muscle quicker. So I'll be working on those!
I go back in 3 weeks to have some blood drawn to make sure the Rilutek isn't eating away my liver.
My brother has become involved with several different ALS groups in California and they have some great ideas and programs. One of which is Extra Hands. This organization is a non-profit agency that provides students (high school/college) that volunteer a few hours a week, to come to your home and assist you with things needing done around the house. Darrin and I are going to be talking with the CEO today about starting a Memphis Chapter. Hopefully, we can get this going here in Memphis!
That's all I have for today :)
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment