Recent diagnosis

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Fyrmn718

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Feb 17, 2005
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Hey tHere, i kind of want to stay annoymous for tHe time being. my uncle was recently diagnosed with als and i don't want him to know that i know yet. my main question is how do i Help him, like wkat do i do around him. i want to Help but i don't want it to look like i'm babying him because of his illness. He's my favorite uncle and i'm scared to loose him. i know it's pretty much enevitable. if tHere is anything i can do i want to do it. money is not a problem and i want to give him tHe best, but tHen it comes back to him not knowing that i know. He wants it to remain a secret for a while but my fatHer told me and swore me not to tell anyone. that's my problem may sound a little confusing but, any Help would be greatly appreciated.
 

jimO

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May 10, 2003
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Country
CA
State
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Not kNowing your uncle's age or how far his progression is just be supportive and if he's able to travel and he has always wanted to go some place incourage him to go because als moves quicker than you expect for me it was a golf vacation but i waited too long and the trip was more work than fun.never did make it to disneyland .just enjoy what you can while you can because the future maybe here before you kNow it.
hope this makes sense to you
 

DebbieD

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May 7, 2003
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Jim's idea is great! you must also hang out with him just as much as before! maybe he'll confide in you soon.
 

Elaine

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Oct 6, 2004
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Hi, just treat your uncle like you always treated Him .he hasn't changed still the same special uncle you always had. when the time is right he'll tell you. i didn't tell one of my brothers that i had als .it took me five months because i knew he would take it hard.i had to wait for the right time for myself to be comfortable in telling Him.be patient he'll tell you when he feels it's right.when he tells you, then you can plan to do tHings that he might like to do. i hope tHis helps a little. elaine
 

Carol Deboer

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May 7, 2003
Messages
343
Hi tHere !

just simply love Him .... you will see wHat you need to do wHen tHe time comes. als presents itself clearly. you will know wHat to do, wHen it needs to be done, and How to do it. just carry on witH as normal of a relationsHip as possible. tHe person Hasn't cHanged. and i agree, go do wHat you can now ! do not wait. time is not of tHe essence witH tHis als tHing. you Have to make your plans now. drop everytHing else and go wHere you want to do, and do wHat you Have always wanted to do. life is wHat you make it, even witH als. good luck to you and your family. and you will find all kinds of support Here witH our gang.

stay strong, carol
 

lhart

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Dec 6, 2004
Messages
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My two bits,
My doctor told Me to do everything i want now and if next year i'M still able...do it again. its been good advice for Me. reMeMber, no Matter what he has to deal with, he's still your uncle and soMe siMple words froM you could change his whole day.
les
 

Fyrmn718

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Feb 17, 2005
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2
I want to thank you folks!

i just wanted to thank you folks so far for everything, i know that i should spent as much time with him as i can, and i am when ever i can. i know with als it sometimes works quicker on some people than others. i wanted to ask if there are stages to watch for, right now he has slurred speech almost like a stroke, and he has trouble eating, a feeding tube may be put in soon the doctors don't know when though. i don't want to upset anyone by talking about the symptoms on this posting but i had to let you know so that if any of these symptoms are familiar you could let me know. once again i want to thank everyone for their advice and support it has meant a lot to know that a guy like me all 200 lbs plus, 6'2" ex hockey player can vent his feelings and receive support in return.
i have dealt with illness before, actually on a daily basis, i'm a firefighter, and to know that when illness hits other families you can feel for them at the time of the emergency, but when you get back to the station it becomes a regular day again. it makes me feel good to know that people like you folks are there so that i can express myself they way i need to. thank you again and i will most definitly keep updating and writing.
 

lhart

Member
Joined
Dec 6, 2004
Messages
28
Hi,
talking about symtoms and personal feelings is what this forum is for. my speech is quite bad now and eating is difficult. the feeding tube was the the best thing i did. i put it off too long and started to lose weight. eating was becoming stressful, with the feeding tube, i don't worry about it any more and have managed to get my weight back up and maintain it. my advice to anyone with any illness is don't wait untill the eleventh hour before you get the tools or help you need to make your life easier. i don't have a lot of control over whats happening to me, its like growing old very fast, but i can control how i deal with it. its important to understand what is happening to your body so you can be prepared to make the right decisions, but you have to ask. if you read through this forum you will find people who have or have had the same symptoms as your uncle. talk to these people, thats why we're here.
les
 

Elaine

Active member
Joined
Oct 6, 2004
Messages
74
Hi, you don't have to worry about up setting us, alot of us are going through what your uncle is going through now. tHis is the place to ask as many questions that you might have.the place to learn is here, by asking and we can help each other with all kinds of information one receives through their own trials and errors. we learn from all the amazing people before us that have als . they all help us with our different needs and concerns. great source of information is with people living with tHis terrible disease and of course all the wonderful caregivers.
good luck with your uncle and keep asking questions. elaine
 
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