THE ODDS (Debbie Does ALS)


Following up

The highlights: I have not fallen, I have not aspirated, and I have not gotten an alert system.

The alert system requires a phone line and that we do not have, relying on our cell phones. Even if we did have a line,  the devices are not Louise-friendly. Consequently, I have engaged weekend babysitters. Now I will never be alone. Or at least not for very long.

In order to avoid that awful aspiration mess, I follow proper drinking-through-a-straw guidelines;  the chin is tucked before my lips even touch the straw. So far, so good -- there is no evidence of any spewage (always a good thing).

Recognizing that the culprit behind Wednesday's gymnastics was lack of balance,  a new walking protocol  is now in place and is strictly adhered to: no matter the distance, my attendant firmly grasps my wrists and we take baby steps to the destination (usually my favorite room, can you guess which one?), and contact is maintained until I am safely deposited.

Caregiver Lisa suggested I might want to think about making the move downstairs. She also  asked  about installing a ceiling track for a lift/sling. I don't like to think about these things just yet, but because I am a planner, I'm considering the following:

1. I will move downstairs at some point.
2. I will widen the bathroom door.
3. Rather than build out the bathroom, I'll purchase a portable roll-in shower.
4. Which will require a roll-in shower chair  (check with Ellen).
5. Rather than install a track, I will procure a Hoyer lift (again, check with Ellen).

If anyone out there has any suggestions, please feel free to comment. I think this is the most  practical and economical solution. Oh, I almost forgot, I may also be in the market for a hospital  bed. Keeping my head elevated and taking the pressure off my lower back are becoming problematic -- I can only put so many pillows behind my head, you know?

Have a lovely weekend. I'm waiting for my new babysitter to arrive...

1 comment:

Sylvia said...

All of your steps are reasonable. They seem geared to your health and comfort. What is the downside of moving downstairs? AS a related question (you can tell I work in a law firm--duh!) Why not have the bathroom built out and door widened as you wait to move downstairs? It seems that in this way--you get the benefit of both--your own timetable (important to me) and the improvements to reduce the stresses in your daily living

Love you kiddo and you are in my thoughts--from the big apple..SRM

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