Old 04-19-2007, 08:19 AM #1 (permalink)
New Member
 
Join Date: 2006
Posts: 61
Mary Helen Barr is on a distinguished road
Mary Helen Barr Mary Helen Barr is offline
New Member
Join Date: 2006
Posts: 61
Mary Helen Barr is on a distinguished road
Default trunk weakness

Of my family, I do the most caretaking of my father. I do a pivot transfer to move him from place to place. The only time he really has to stand and stay standing is when I clean him up after using the toilet. Even though he is putting weight on his legs, he has to lean on a towel bar and walker, and I have to use my body to help hold him up, only giving me one hand to do what I need to do to clean him up. (really should be a 2 person job, but it's just me). I often have to sit him back down on the toilet to rest, and stand him up again several times, especially when he has diarrhea (like now). Anyway, is it trunk weakness that makes him bend so far forward? Does trunk weakness lead to bulbar symptoms? He doesn't seem to have bulbar symptoms, even though his head hangs. Any breathing difficulty is due to his airway being closed by his hanging head. When I tie his head back on his wheelchair (a little invention of ours), he doesn't have trouble breathing. I guess I'm just wondering about his "trunk"--he seems to curl forward while standing. His progression is pretty slow, but I was just wondering about other patients and that area of their bodies. MH
Mary Helen Barr is offline  
Old 04-19-2007, 11:22 AM #2 (permalink)
Moderator
Forum Moderator
 
Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
CindyM CindyM is offline
Moderator
Forum Moderator

Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
Default

Hi Mary Helen. I am sorry that your Dad has this horrible disease and sorry for all you and your family are going through. He is lucky to have such a wonderful and caring daughter and I am sure you will never regret the love and attention you are showing him in his time of need.

You are right about the task at hand being a 2-person job. But professional caregivers have tricks of the trade not known to the rest of us. Perhaps your ALS clinic or your local MD chapter can offer some tips on how to transfer your Dad while providing personal care. They may also offer additional (often free or low cost) help if you are not already getting this. Seems like a home-health aide might be in order.

Last thing: if you do a search at the top of this screen you might find ideas on braces that help people with weak trunk and neck muscles. At any rate, let us know how this works out for you and your Dad. Often the best advice comes from folks who have "been there." Cindy
CindyM is offline  
Old 04-20-2007, 03:14 AM #3 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

Hi Mary Helen. I have a shower commode chair that was given to me by a friend that's husband passed away due to ALS. It is adjustable for height and when this becomes an issue for us for wiping I'll be high enough that it can be done fairly easily. Is your chair height adjustable? As the muscles get weaker we do tend to fall in the direction of least resistance which is usually forward.
AL.
Al is offline  
Old 04-20-2007, 10:20 AM #4 (permalink)
terri's Avatar
Member
 
Join Date: 2005
Posts: 127
terri is an unknown quantity at this point
terri terri is offline
Member
terri's Avatar
Join Date: 2005
Posts: 127
terri is an unknown quantity at this point
Default toilet

Hi Mary Helen,

I use a lift to move LB from his chair to the toilet and back to his chair. It's pretty easy when using the Hoyer. We have a U-sling (split leg) which leaves his bottom completely exposed so it pretty easy to clean him plus he is secure in sling and I don't have to worry about him falling over.

I hope you find a solution soon. Good luck.

terri
terri is offline  
Closed Thread

Tags
back, breathing, bulbar, family, father, lead, progression, symptoms, symptoms?, transfer, walker, weakness, wheelchair


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
The Age Old Question: Perceived Weakness Vs. Clinical Weakness max777 Do I Have ALS? Is This ALS? 30 01-31-2014 02:23 PM
For The New People: Perceived Weakness and True Weakness notme Do I Have ALS? Is This ALS? 29 11-07-2012 09:02 PM
weakness in body/weakness in neck/mouth edwards5257 Do I Have ALS? Is This ALS? 9 07-18-2012 06:56 AM
Head and Trunk Falling Over abbas child Tips, Tricks, and Gadgets 23 03-18-2011 11:08 PM
Can you loose trunk muscles before you loose the use of your legs APL55 General Discussion About ALS/MND 14 11-15-2010 09:55 PM
Wheelchair - When the trunk muscles are gone... abbas child People With ALS - "PALS" 18 10-27-2010 09:39 PM
Trunk involvement Booklady General Discussion About ALS/MND 7 03-02-2010 11:16 AM
Weakness from UMN and LMN fmarino General Discussion About ALS/MND 0 03-21-2008 09:19 AM
Leg Weakness (I think) fmarino General Discussion About ALS/MND 2 03-13-2008 01:25 PM
Weakness vs "feeling of weakness" ptich General Discussion About ALS/MND 1 08-12-2007 12:58 AM


All times are GMT -5. The time now is 06:35 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016