Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

I was laying in bed last night thinking about this and had the wording all figured out. Now I can't remember how I was going to approach it! It is great to be getting older and not able to remember. LOL.

 

This is going to be a 2 point post.

 

The first point is that everyone should get things in place before needed and practice using them. Items like walkers or wheelchairs are easy to get when you need them, but even these should be in place before they are necessary. Don't wait too long and risk a fall.

 

Things like renovations to make your home accessible once you are in a wheelchair, a bathroom and shower, a lift and sling. These thing are important to have in place well before they are needed.

 

What I am thinking of is a lift, this can be a time consuming endeavour to do it right and have it work properly. If you wait too long it can become a nightmare for both PALS and CALS. I wish someone had emphasized the importance to me - so I am doing that for you and hope you will heed the warning.

 

I have always tried to have things in place before they are needed and thought I had this taken care of. But now that we are having to use a lift for all transfers it is a nightmare. The sling is very hard to put on and extremely uncomfortable, to a point it is down right painful. After using it my wife is in tears as I am at a point that I can't help at all.

 

Lifts are very expensive so we only put a track over our bed and then one in the bathroom. This setup requires a transfer from the wheelchair to the toilet, then back into the wheelchair, then move the motor to the bedroom and hook everything back up and transfer me from the wheelchair to the bed. Then comes the chore of trying to get the sling off me. That is a whole other story.

 

There is also the issue of how do you get your pants up and down?

 

What we should have done is had the track go from the bedroom all the way into the bathroom so several transfers could be eliminated. We are still looking for a more suitable sling.

 

Update: We finally have all the bugs worked out and things are working well. We modified the sling and leave it on me 24/7. We don’t worry about pants anymore, we pull them up to my knees and through a blanket over me. We still need the track to go from the bedroom into the bathroom but are so used to doing the transfers it is no longer an issue.

 

So, what I am suggesting is that you get a lift in place and practice using it before you are absolutely dependent on it. Iron out the bugs early, you will be thankful you did.

 

Please don't take this lightly, it is more serious than you think. Without proper planning, and working the bugs out, it can be a nightmare and create huge problems.

 

The other thing I would like to mention is the topic of relocating/moving. I am not talking about moving to a more suitable house in your town. I am taking about moving to a different city because your, well meaning, children want you closer. Although this may sound like a good idea it may not be. After getting our house set up for my care we were talked into selling and moving. It turned out to be a bad idea and we had to start all over again with renovations. This time I could not do it and we had to rely on our children and hire people, needless to say things are not the way I would have done them. They also cost way more than we could afford.

 

Then there is the problem of making new friends, suffice it to say that has not happened and if it was not for some ALS forums and our children, I don't know what I would do.

 

So, if there are children of PALS reading this, please think hard and long before making your parents move, it may significantly shorten their lives.

Added: Dec 2009

Updated: Oct 26, 2010