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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.
 
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!
 
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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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
 
Ken, voice banking #1, list of go-to peeps #2, I chose addition to house, ramps work, are you a vet?
 
I'm not a vet. I appreciate your advice and am planning handicap-accessing the house next.
 
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