new member to the forum

sassy

Active member
Joined
Apr 22, 2018
Messages
65
Reason
CALS
Diagnosis
02/2018
Country
us
State
Massachusetts
My husband is also a slow progressor and we need to redo the bathroom. Years ago my mother became bedridden from a rare pulmonary disease and was unable to go upstairs to shower. So when we bought our last house- we made sure we had a master on the first floor.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
922
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
Hi Vincent,

I'm sorry to ask this - but I'm asking a few people, since I am a slow progressor as well - where are you at in your abilities to do/not be able to do, certain things at this point in your diagnosis? (If you don't want to answer, I'm sorry for prying!)

Thank you!

~Christine
Hi Christine, at five years plus I can still walk, talk and use my hands. I use a powerchair to conserve energy. That is the big thing, energy. I use a bipap at night as well as the afternoon. I also got a g- tube done as I have trouble with pills.
You just have to focus on what you can do and what you are too tired to do can wait. I look at it that I have really bad things coming, but they aren't all happening today. So focus on today. And remember NO WHITE FLAGS!
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
48
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
Hello, Ken and Vincent!

(I'm a HUGE fan of Steve Gleason, as well! NO WHITE FLAGS!)

First, Ken - as soon as I found out - I put my house on the market and since I felt I had 'some time' I didn't sell lower than I wanted and got a little more, plus didn't pay closing costs. BUT that took about a year. But I am 'glad' (?) I did it. I went through the difficult struggle of leaving the memories that were made there behind, and the 'what am I going to do with all of my 'stuff'?! BUT I wanted to be around a longer time to make more memories and the house was too much to keep up with - plus a larger yard and lots of steps in the home. So, instead of paying someone to clean, mow my lawn and shovel my driveway - I moved into an apartment that actually resembled a 'condo' - AND it was already modified for persons who are handicapped. I have wide doorways for when I need a wheel/power chair, the showers are already modified. It is all one floor with an attached garage that leads directly into my home. I acted on this one right away, because I knew it might take some time. While I was sad about leaving our home/memories, etc. - It needed to be done. Now, I have not done the voice banking and should probably do this soon.

Now Vincent - I get tired MUCH faster than I used to. I wasn't sure if that was the disease, or me making certain I conserve my energy - which could lead to 'if you don't use it, you lose it'. I like the idea of the power chair - I will mull that one over, and give it some serious consideration. I have a J-tube as I developed gastroparisis (sp?), so my tube needs to go into my intestines and it takes FOR-EV-ER to do a feeding at the lower rate I need.
 
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KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,452
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Mod note: I have moved some posts to another thread because I felt they were veering off the topic of the current thread, which is Ken’s introduction and comments on progression rate
 

Jhettinger

Forum Supporter
Active member
Joined
Sep 22, 2016
Messages
82
Reason
PALS
Diagnosis
4/2016
Country
US
State
GA
Ken, voice banking #1, list of go-to peeps #2, I chose addition to house, ramps work, are you a vet?
 

KenM

Member
Joined
Jun 21, 2019
Messages
19
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
I'm not a vet. I appreciate your advice and am planning handicap-accessing the house next.
 
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