LAST UPDATED ON 02/03/2019
I am currently being treated with a drug called Radicava, which hopefully will slow down my decline. It does not cure anything, but merely slows the process down. So far, I have no side affects from the treatment.
I have an hour infusion 10 days out of 14, then 14 days off. This treatment could go on indefinitely, or as long as I am alive.
I suggested a different infusion, but the doctor did not agree. See picture below.
My speech has gotten much worse, and I now have to use an app on my phone to be understood. This has become a major source of frustration. Penny is having a difficut time understanding me.
Found a great APP for my slurred speach problem. Available for android or IOS phones. You can customize the responses, or type individual speech.
I CAN COMMUNICATE
This page is designed to communicate my current situation to anyone interested. As speaking and being understood has become more difficult, this will keep you up to date.
All the affects above, I am experiencing, except the lower voice and have
not had much cramping.
I can only eat foods that don't require a lot of chewing and can be swallowed easily. (Gravy or sauces help)
I also have difficulty drinking liquids without choking. I envented a very soothing and healthy drink, utilizing the BOOST supplement. (See Pic Below)
Amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, is a disease of the nervous system. It weakens the muscles and also affects the nerve cells in the brain and the spinal cord. ALS is very rare. Only about 20,000 cases are diagnosed every year. While it is treatable, there is no cure. As the disease progresses, motor neurons die away due to lack of nourishment. The brain loses its ability to initiate and even control movement. This often results in the loss of the ability to eat, speak, move and even breathe. Symptoms may differ between patients with ALS.
COMMON A.L.S. AFFECTS
Click on Doctor to view.