So you want to know what ALS is like…?
Hmmm, let me see if can help you understand.
Imagine every major condition that effects the nervous system, brain or both. Now take the worst aspect of those conditions, put them all together in one body. Add those symptoms, effects or limitations in any sequence or order for everyone affected. Now sprinkle this conglomeration of progression and symptomology with round the clock care, stress, anxiety and depression and you have, oh wait! One more thing. You are aware of everything, everything. But unable to speak, breath or eat without help or medical equipment.
Yeah that’s what ALS is like, for the person living with ALS.
Now what is it like for the family, friends and caregivers? I don’t know, let’s ask them…
I hate this disease! I hate this disease for you. I hate this disease for my father. I HATE this disease. It’s the worst above all. Breaks my heart to watch my father, you, or anyone endure this. Makes me recognize just how ungrateful I have been in not being taking better care of myself every day. Wish I had gone into medicine and discovered a cure for this disease. I cry in silence. I hide to cry. I wish I could make things better.