ALS over 75

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Dominika

New member
Joined
Aug 23, 2014
Messages
3
Reason
Friend was DX
Diagnosis
08/2014
Country
SVK
State
Slovakia
City
Banska Bystrica
Hey people.. is anybody here who knows somebody with ALS over 75y please? My grandma s got this insidious disease this month. She has affected legs and are starting to be affected by the hand. Doctors have not met anyone who was diagnosed at such a high age as she is. She is 75 years old.
 
> is anybody here who knows somebody with ALS over 75y please?

yes, one in our als group, 3 or 4 in our ALS clinic group.
 
I'm sorry she had to get the disease but glad that she at least lived a good number of years before she got it. It can hit at any age though over 60 is the likeliest.
 
I have a friend PALS here locally, not sure of his exact age but he is certainly over 70
 
My husband was diagnosed at 72. Ironically, one specialist ruled out ALS because he said my husband was too old to have it!
Neil, he often remarks what you said about living a long life! When you've had a full, rich, long life, it is a LITTLE less devastating (maybe!) than young people with young families who should have many years ahead of them!
 
Hi! My name is Skipper. My dad was past 75 when diagnosed. It was two years in May since he got his diagnosis. He will be 80 on Sept. 11th. Dad has limb onset.
 
>it is a LITTLE less devastating (maybe!) than young people with young families who should have many years ahead of them!

Ditto that!
 
HI Skipper. How is your dad please? Is he having Rilutek? He is living with ALS lond time in this age. Sorry for my english. Thank you Skipper.
 
Hello. How fast the disease progressed please?
 
all different like snowflakes -- I could live until next week, month, year, or until the Packers win the Superbowl again ...


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Max - Sunday, August 24, 2014 2:26:45 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Dominika, that is the question we would all like to answer but can't.

We don't know why, but everyone progresses at a different rate. Sometimes it is obvious early on that a person will progress rapidly, sometimes not.

My husband was obviously rapid progression and he passed away 11 months after diagnosis.

My friend in his 70's was diagnosed just over a year ago, he can still walk, talk with difficulty, swallow with difficulty, no use of one arm, reasonable use of the other arm, good breathing.
 
Am I the only person to admit having ALS and being over 75 years young? ? Was diagnosed in October 2010 at the tender age of 74. I am exceptionally thankful to be progressing at a relatively slow pace. I was blessed with having been diagnosed very early and thus getting on Rilutek very early. - - Could be a bit opinionated, but really believe early diagnosis could extend our life expectancy over what we now believe to be three-to-five years. As a slow guy, I consider myself very lucky in this very unlucky club of ours. Yes, I also no longer sweat the small stuff and don't feel at all guilty of having a good stiff measure of Scotch in each and every late afternoon. Peace.
 
all different like snowflakes -- I could live until next week, month, year, or until the Packers win the Superbowl again ...

but I know I wont live till the Knicks win the NBA championship again-not even if I was 5 and healthy!
 
My adorable funny youthful husband is 77 and just a few months into diagnosis. I am 64. We have been married a short 22 years.
I feel heartbroken for everyone who encounters this disease within their life circle - young and old.
Has he had a full life? yes, of course.
Could I be more frightened and devastated? no - I can't imagine it.
 
Dominika,
My dad tried Rilutek for a very months when he was first diagnosed. He didn't feel it did any good whatsoever so he quit taking it . He used a bi-pap machine also at night for awhile when he was first diagnosed. He has one now but doesn't use it. His breathing is still pretty good. He also can eat most of the time without any choking episodes as long as he takes small bites and isn't distracted while eating. Also, his food shouldn't be overly dry. He choked really bad on a overly cooked steak in a restaurant in June on my birthday. So, steak is not something he usually eats.
Dad still talks pretty clearly. He only sounds hoarse if he's tired or if someone has upset him. Dad can still manage to feed himself and with much effort brush his teeth. But, other then that he needs help with everything else. He can take steps with his walker with his caretaker directly behind him only on firmly to his gait belt. But, he has have help from caretakers to get out of bed and their help to get out of a chair. He has no strength in his arms and only can use a few of his fingers. He talks to me on the phone by using speed dial and putting me on speaker phone.
Dad drinks Boost that he gets free through the VA. I think it helps him maintain his weight. His weight is holding pretty good. They don't want him to gain a whole lot because they don't want it to go to his stomach.
Dad was in the clinical trial of the drug Athatar for several months. He had injections twice a week. He had not bad side affects while in it. They are unsure if it did much good or not. But, he didn't progress really any while he was on it. He didn't improve nor progress more while on it. He said the results of the others who were in the trial with him had the same results. No changes one way or another while on it.
My dad is a real trooper through all this and rarely complains. He so hopes that we find a cure soon. He says not so much for him anymore but the young people who are getting this with young family.
Let me know if you have anymore questions and if I can be of any support. I am not my dad's caretaker but feel free to ask any questions. If I don't know the answer any of the other PALS/CALS would be willing to help out. Kim
 
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