Hello PALS friends, I am a senior (67) Mexican citizen, trying to know more about this disease. I have Bulbar ALS, and still have most of my mobility in limbs. There is weakness and some clumsyness in my movements. I have the PEG inserted in my stomach, and have learned to use it without major problems.
What I am trying to define is if physical exercise is not bad to keep strenght or energy in my body, since I feel a little week mostly in the evenings.
I have 3 children and 6 grandchildren; they have been realizing about my disease and the problems I have, and how it affects my social life.
Since my initial knowledge about Bulbar ALS, I Have tried to focus on the positive side of this tremendous disease. What do I have left of my normal life, including intact 5 senses, total brain activity, gradually reduced limb mobility, absence of pain,etc.
Every day I thank God for letting me live one more day, also asking him to let Medicine to find a cure for this disease and for other diseases that are killing many people.
The most difficult part of my ALS, is the lack of speech capability, since communication is needed most for explaining the kind of problems I have, and why I reject to do some activities, and what other effects the disease bring along.
My insurance lets me take advantage of specialized ALS treatment in the USA. Since my initial stages of ALS, I have gone to UCSF ALS Clinic, where I get updates about how I am,
and get some recommendations to cope with the different sides of ALS. I am also taking Rilzole and Lithium Carbonate, and other supplementary enzymes and vitamins.
I usually think about those PALS that are more advanced than me, and the ones that are leaving us. I hope that the Cellular Tharapies very soon have the cure that we all are