Things that helped you as a PALS

Jimi

Distinguished member
Joined
Sep 24, 2019
Messages
153
Reason
PALS
Diagnosis
02/2015
Country
US
State
CA
City
Torrance
For me,, my DIY "smart recliner" has by far been the most helpful. Having the ability to adjust the headrest, backrest and leg rest when ever I desire hands free from my phone or computer has been a game changer...
 

KenM

Active member
Joined
Jun 21, 2019
Messages
44
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
City
Charlotte
thanks to all for these very helpful suggestions.
For me, for now my symptoms are confined to my feet and legs. The single most helpful tool for me is my AFO, which has given me much greater mobility and had reduced worries that foot drop will cause me to trip and fall. Also allows me to stand for longer periods of time before needing to take a seat.
 

Shadefinder

New member
Joined
Nov 12, 2020
Messages
4
Reason
PALS
Diagnosis
06/2020
Country
US
State
WA
City
Seattle
I am fairly new to my ALS journey but have already made some changes as my symptoms progressed. I first had symptoms of Bulbar ALS in September 2019 with a slight slur that stayed slight until January 2020.and got progressively worse until I quit working in June 2020. I finally got a diagnosis of probable ALS in June 2020 and confirmed ALS when my C9 test came back positive July 2020. Once my grip started going I switched to front closure bras once I could no longer clasp the traditional back hook bras. I also have a bidet toilet seat that I bought when I renovated my bathroom in 2016 I’m regretting not getting a blow dry model. But have seriously consider using my actual blow dryer to dry now. And regret not putting in walk in tub I was thinking about it then! I also cut my hair short as I was having trouble detangling it. It’s super curly. I live in a basement apartment alone. And don’t want to move until I really can’t walk up and down the three steps from outside to my door.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,036
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Shade,
If you still have enough strength to wipe yourself, just put some wash cloths near the toilet. After the bidet has done its magic, use a dry cloth to wipe. I have a stack of them because I'm too impatient to wait for the dryer to finish, especially if it's in the middle of the night.
 

JimInVA

Senior member
Forum Supporter
Joined
May 29, 2014
Messages
865
Reason
Lost a loved one
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
Darcey wore her nasal pillow mask all the time during the day. She disliked two things about it the most. The first was that if the hose dropped against her arm, it made her cold. The second was that the weight of the hose would pull somewhat on her mask... making it feel weighted. One day I came up with an idea that solved both situations for her and gave me another one of those "Champion" moments.

With simple plastic tie wraps and a paper binder clip, I was able to affix her Trilogy's hose where it neither could touch her arm or would pull upon her mask. Here's a picture of this simple solution...

Trilogy Hose Clip.jpg
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,191
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Just a note that, in addition to Jim's solution, Circadiance masks can use a narrower, lighter ("Feather Weight") tube that connects to the regular hose, so there is less drag on the hose and weight on the mask.
 
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