Sempra
New member
- Joined
- Jun 22, 2006
- Messages
- 3
- Reason
- Loved one DX
- Country
- CA
- State
- NS
- City
- Fall River
Hi all,
My Father has Bulbar ALS for the last 7 years. This is progressing really slow. He is permanently in a wheel chair now. Although he still does lots of things on his own such as, he is still eating solid food and eats himself, uses the computer, remote controls, pats the dog, etc...
When he talks, he tries to yell so we can understand him. Or he sounds like he's drunk and takes breaths after every couple of words.
My Father thinks he got this disease (?) because he was a printer all of his life. Dealing with aluminum and chemicals. Even though they have done every possible test and his diagnosis is ALS, my Father still hasn't come to terms with this. He thinks it is something else other than ALS because according to all the written material he has digested, people with ALS just don't live this long.
He is frustrated all the time. My Mother (primary caregiver) is taking it hard. She feels worthless because everything she does, he complains about.
I tried explaining how my Father must be feeling and to take it with a grain of salt, because soon he might not be talking at all and that would be worse.
My Father has been my Superhero all of my life and to see him like this makes me frustrated and sad.
On a lighter note: In Halifax, Nova Scotia on June 10, 2006, there was a walk for ALS and we raised $59,688.00 I was very proud to be part of it.
Thanks for listening,
Sempra
My Father has Bulbar ALS for the last 7 years. This is progressing really slow. He is permanently in a wheel chair now. Although he still does lots of things on his own such as, he is still eating solid food and eats himself, uses the computer, remote controls, pats the dog, etc...
When he talks, he tries to yell so we can understand him. Or he sounds like he's drunk and takes breaths after every couple of words.
My Father thinks he got this disease (?) because he was a printer all of his life. Dealing with aluminum and chemicals. Even though they have done every possible test and his diagnosis is ALS, my Father still hasn't come to terms with this. He thinks it is something else other than ALS because according to all the written material he has digested, people with ALS just don't live this long.
He is frustrated all the time. My Mother (primary caregiver) is taking it hard. She feels worthless because everything she does, he complains about.
I tried explaining how my Father must be feeling and to take it with a grain of salt, because soon he might not be talking at all and that would be worse.
My Father has been my Superhero all of my life and to see him like this makes me frustrated and sad.
On a lighter note: In Halifax, Nova Scotia on June 10, 2006, there was a walk for ALS and we raised $59,688.00 I was very proud to be part of it.
Thanks for listening,
Sempra
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