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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
 
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kathmc

Active member
Joined
Jun 9, 2006
Messages
51
Reason
PALS
Diagnosis
02/2006
Country
US
State
ky
City
lexington
Hi! Welcome. I am new too.

Your post and a recent one from a New York son remind me of what we're going through. From my( the patient )Point of veiw the ever changing landscape is frustrating and lonely. There are times my brain seems to know that this body can't do a move or shift of weight that it did yesterday and other times when a simple unquestioned move turns me into a human avalanche. When a new restriction rears its ugly head, I get weepy or cross. I actually like cross. I was not a weepy person b4 and see it as a win over uncontrollable tears that first visited several years ago and took root. Cross, however, is hard on those around me. I wish my husband would( and wanted to ) hug me at those tears or temper times. Do you think your dad could be wanting something and is shy in the asking. Maybe like me, anger sometimes feels like stronger.

The realization came that after a diagnosis of als, no Dr. would ever look further. I didn't like that feeling.

I can make some suggestions and hope that they are not inappropriate. Please don't take offence-- these hopefully will become a springboard to better ideas. Sounds like he wants to keep searching for a condition w/ als symtoms, maybe thats OK, maybe he wants help searching. I did this & discovered many diseases as bad as ALS, and finally tired of the hunt. Are there activities he enjoyed b4 like movies, books on tape, volunteer jobs? I like funny movies, laughing is a internal massage. In this town where no one knows me, I volunteer( am honest about what i have if they ask )They say great, but no one calls w/ assignment. Fundraising projects was my spec. b4. It is Frustrating.

I felt sour the other day w/ 2 new sym. AOL saved the day. In march. we tried the free dial up 6 month trial period that came w/ computer. It was the most frustrating free thing we ever got. After a month I cancelled, a 4 hour epic of voice mail evasion b4 i got a person. The next mo. our credit card is charged for this free service. Last nite their collection arm called about our outstanding bill. I got the billing #, called & got the same robot voice round robin evasion. This was a perfect place to exercise verbal blasting. As the machine kept giving the same questions when answers were polite i resorted to made up syllables. We almost died by laugh when machine said she understood, then asked same questions again. 30 min. later we got a human so syllables worked better than answers by 3.5 hours. Am thinking of calling their 800 # again whenever feeling a need to blast.

Take care of yourself, i'll add you & yours to my prayer list. let me know if you want that 800 #.

kathy
 
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