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lcaron50

New member
Joined
Sep 28, 2012
Messages
2
Reason
Loved one DX
Country
CA
State
Ontario
City
Ottawa
Hi. I can no longer find the forum that speaks to the issue of losing mental capacity as ALS progresses. When I first read it I was totally surprised for in all the reading I have done, it does not state this. Is losing your mental capacity common? Any information would be greatly appreciated. He is 78 (totally alert, brilliant and lovable :>) was diagnosed 2 yrs ago and his now dependent on his wheel chair when outside of his condo and is beginning to have eat/swallowing issues.
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
It used to be thught that ALS did not effect the brain. Now, they know it does. To what extent varies from patient to patient. Dementia can be caused by ALS. Also personality changes are often reported. Frontal lobe involvement from what I read results in a quicker death. It is all still a mystery, but the mind is affected in one way or another. My wife of 69 just passed away after a 3 year battle with ALS. She definitely had a great personality change and said and did things she never would have. I also noticed that she had a dull look when something was funny on TV and was not spontaneous with a laugh or comment. Kind of dulled. She was not on meds, so it had to be the ALS. As far as your loved one. He has lived more that most men. Pray it will be quick and easy for him. Do not forget hospice, it is an excellent place for care and to keep clean. Also hospice at home will take care of him very well. Make him comfortable, check his vitals, and meds delivered right to the house. Even a nurse practitioner each week. As old as he is he will most likely go in his sleep one night. God bless and thank God he will not have to go through this horrible ordeal too long due to his age.
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,569
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Hello,

I am your neighbour in Ottawa. So sorry to meet you here. I understand, that some people can indeed suffer from some dementia. (The acronym of the condition escapes me just now).

Have you been to the Ottawa ALS Clinic? Dr. Buenger,. there is wonderful and the rest of the team is awesome. Their phone number is 613-737-7350. Try calling the nurse- Co-Coordinator, Susan, as she manages the whole place. If there is anything, I can do to help, please let me know. I also reside in a condo in Centretown. You can leave a message on my visitor page.

All the best to you and your family. You sound like a great daughter-in-law!
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,569
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Hi

My post went to moderating land... hopefully it will show up soon. I'm a neighbour in Ottawa.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Look on the menu here for ALS and FTD. you will see alot of good info. Perhaps your father-in-law will not get FTD--if he doesn t have any changes yet after 2 years. (not all people with ALS get FTD)
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Sorry for your father's diagnosis. Hope the link helps you find the info you are looking for.
Sounds like your Dad's mental capacity is OK so far. Not everyone has issues with. FTD, but it's certainly something CALS should be aware of.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,226
Reason
Other
Country
HM
I agree with Deb. Not all pALS are affected, but researchers think that as many as 50% (if I remember correctly) may be affected in one way or another.

It is very nice of you to look into things for you FIL. Good to keep informed so you can be prepared.
 

lcaron50

New member
Joined
Sep 28, 2012
Messages
2
Reason
Loved one DX
Country
CA
State
Ontario
City
Ottawa
I hope I am doing this correctly.

I am so sorry that we all have to meet this way but I am very thankful for your support and 'education'. This forum is filled with very special people and a huge thank you and hugs especially for those who have lost a loved one to ALS and is still taking the time to offer help and encouragement. Elaine, I will contact the Ottawa ALS on Tuesday. Thanks again guys!
 

Helpals

New member
Joined
Nov 3, 2012
Messages
1
Reason
CALS
Diagnosis
11/2011
Country
US
State
North Carolina
City
High Point
Hi,
My husband has ALS? Diagnosed in 2011. His arms and shoulders are very weak and getting weaker each week. Are their any devices or support to help arm movements to help dress and lift small items. High Pt, NC
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
HelpAls, there are several things you can do. To get more helpful responses, I'd suggest that you post a new thread with that title in this part of the forum--just your own thread, so more people see it--as this persons main question has been answered, it's possible no one will see yours.

The ALS center you see should have an occupational therapy dept--if they do, they can also discuss options to help with dressing and the like. Unfortunately, when the arms go completely, more help is needed from the caregiver. Button down shirts are easier when the arms can't be lifted, for instance, for a caregiver to put on. Pants that don't have zippers...that kind of thing.

There are computers that work with the eyes, and with voice. If he can't grip a gripper to open it, then one wouldn't likely help. I think you['ll have to look more at ways to do things he does now adapted to be done without much arm/hand use.

I've only got one arm about all useless now, but I've found that I do better with no zippers, slip in shoes, I can lift my arm, so I don't need button shirts (I can't button them anyway) but for a man who can't raise his arms, they are going to be easiest to put on.

You can also contact the ALS assoc. in your area for tips and suggestions as well.
 

hjlindley

Senior member
Joined
Dec 1, 2011
Messages
761
Reason
PALS
Diagnosis
10/2011
Country
US
State
VA
City
Richmond
My hands and arms went 1st. I still have some use in my hands and find that locking vice grips give me some power. All my closed stretch but I bought a box of binder rings so I can zip things up. Pliers help. boot hooks can grao belt loops or the like. Socks atr my biggest problem. Crocs help me to not slip in the shower. good luck!
 
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