Home Health Care

As my limbs continue to get weaker I am needing more help.  Kim and Jean have been wonderful, but they could use some respite also.

My right hand is becoming non functional quickly.  My two rightmost fingers are pretty much useless and don't move much.  At night my hand pretty much folds closed.  I really can only use my index finger or thumb to type on the keyboard.  I have great difficulty grabbing a Kleenex out of the box.  I have to tape my feeding tube onto my stomach.  I can't rip the tape and can barely use scissors to cut a piece.

I bought a special pen so I can sign my signature when a I have to.  One is a ring pen, the other is a stubby pen that fits my index finger.  I can no longer hold a spoon or fork the way you do.  I have to grip it in my fist and then struggle to raise it to my mouth.

I can no longer get a shirt over my head without help.  I can barely get one off.  I can lift a 5lb dumbbell with my left arm but not with my right.

Because my fingers are so weak I can't button jeans or pants, so I wear sweatpants.  I can barely zip a zipper sweatshirt.

I bought a portable floor pedal exerciser that I can try to use to exercise my legs or arms but my legs shake when I use it.  I used a cane for about 2 months but had to get a 4-wheel rollator walker that I now have to use all the time.

We contacted a home healthcare organization 3 weeks ago and they put us on a waiting list and we haven't heard back.  We met with Home Instead tonight and will hopefully start getting some help this Friday three days a week.  I need help showering, dressing, and fixing food at this point.  This should take some of the pressure off Kim and Jean and will help me also.

Eventually I will need help 7 days a week and around the clock, but we're not there yet and hopefully won't be for a while yet.  I may be in a wheelchair in the next few months instead of a walker if my rapid progression continues.

We just ordered a vibration plate exerciser that I can use upstairs that may help me preserve my remaining limb strength a while longer.  Also plan to start walking with my walker around the parking lot next week when home health is here.  I need to get in shape for the 2 mile ALS walk on June 6!

We sent my completed Long Term Care claim form in this past Monday.  Once approved and after a 12-week elimination period we will have a daily benefit to offset the costs of some of my care needs.