Don
Member
- Joined
- Dec 24, 2019
- Messages
- 19
- Reason
- PALS
- Diagnosis
- 11/2017
- Country
- US
- State
- MA
- City
- Northbridge
Good evening everyone,
I am in my 27th month since diagnosis and had symptoms I ignored a year before that. I am 65 years old, live with my beautiful wife of 41 years who cares for me.
I still have the ability to walk with a walker in the house but it is scary and I am stubborn. I have trouble talking, but do some consulting for my former employer and can speak for short periods on conference calls. I hate eating, I cannot hold my head up for long periods and I get tired chewing.
My fingers do not work well but I have always been a two finger typist. My pulmonary functions are down quite a bit (under 50% of expected and much worse lying down) and cannot talk unless seated. Basically everything is weak but I am still not paralyzed.
Lately I feel as if the progression is quickening. Things I did one month ago I can no longer do. Every day I feel weaker. I have refused a feeding tube and invasive breathing apparatus (I use a BiPap every night). I have a DNR and my wife understands my reasoning.
I am just asking for comments and can handle bad news. I am depressed more, and getting up each morning is difficult. I am worried about the next stage, but I try to be realistic and be aware of the future. I would enjoy reading all comments.
I am in my 27th month since diagnosis and had symptoms I ignored a year before that. I am 65 years old, live with my beautiful wife of 41 years who cares for me.
I still have the ability to walk with a walker in the house but it is scary and I am stubborn. I have trouble talking, but do some consulting for my former employer and can speak for short periods on conference calls. I hate eating, I cannot hold my head up for long periods and I get tired chewing.
My fingers do not work well but I have always been a two finger typist. My pulmonary functions are down quite a bit (under 50% of expected and much worse lying down) and cannot talk unless seated. Basically everything is weak but I am still not paralyzed.
Lately I feel as if the progression is quickening. Things I did one month ago I can no longer do. Every day I feel weaker. I have refused a feeding tube and invasive breathing apparatus (I use a BiPap every night). I have a DNR and my wife understands my reasoning.
I am just asking for comments and can handle bad news. I am depressed more, and getting up each morning is difficult. I am worried about the next stage, but I try to be realistic and be aware of the future. I would enjoy reading all comments.
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