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Xtina1217

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Joined
Apr 7, 2008
Messages
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Loved one DX
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US
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FL
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Oldsmar
Hello All!

My name is Christina and I am a daughter/partial caregiver to my father who has ALS. My mother is also a new member, and I at first just signed up because I figured I could help her manage her profile (I am a little more computer literate ) but after going through the site I was blown away with the amount of information available, and also how nice it must be to just vent your feelings sometimes and have other people actually understand how you feel.

To give a quick background to my dad's case, he was a hard working truck driver who was always active looking for things around the house to fix, even if they weren't broken to begin with. Then after a fall at work he was forced to have a knee replacement. When he wasnt recovering, and was in fact getting worse is when we had to go to a specialist. After going from doctor to doctor to get a diagnosed. we finally were given ALS as an answer in late Nov/ Early Dec of this past year. In just these past horrible monthes he has gone from walking with a walker to being completely wheelchair bound, and his hands and arms have become inactive to the point where we need to feed him his meals, and most recently his voice has changed quite a bit and is starting to have trouble pronouncing some of his words.

I was just wondering, does anyone have any possible ideas on what to expect next?

Looking forward to talking with you, and helping in any way I can!

Christina
 

CindyM

Moderator emeritus
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3,543
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Learn about ALS
Country
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New England
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Anytown
Hi Christina- I am not a CAL (person who cares for someone with ALS) but I have a hunch you might want to prepare for grinding up his food. If he is having trouble talking, chewing and swallowing could come next. Is he registered with your local ALS chapter? The MD folks? THey might knowof support groups in your area where you and Mom and Dad can pick up some tips.
 

Xtina1217

Member
Joined
Apr 7, 2008
Messages
11
Reason
Loved one DX
Country
US
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FL
City
Oldsmar
Cindy,

Thank you... and yes he is a member of ALSA as well as The Les Turner Foundation specializing in ALS and we have gotten quite a bit of help. the only thing about that is that some people have been there for someone with the desease, but that is much different than experiencing it first hand... even if that means the experience through a loved one! That's why I am so greatful to have found the forum!

Thanks Again!
Christina
 

CindyM

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Joined
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Messages
3,543
Reason
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Country
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State
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City
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I am glad you found us, too. THere are a bunch of caring and experienced folks areound here and a wealth of information. Please keep us informed on how things are going!
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Christina - first, welcome to the forum. I know it was mentioned before but please remember to sign up with MDA also. They have a very big ALS division and funding and loan closet in addition to information is available.

Sharonca
 
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