February Update

It has been a log time since I posted an update because I have had difficulty using the eye gaze system and I have been depressed for many months. 

I received my own eye gaze system about six weeks ago and Jessica and Megan from PSU came over a couple weeks later to help adjust it and it was working great.  Then the lady from PRC came in to pick up her loaner and try to make it work with the floor stand we bought, but it didn't work with my lift chair recliner where I spend my days. 

So I am still using my tray table and table stand but she messed up the positioning Jessica had perfected.  Every time I get up or reposition have to recalibrate and depending on the height, angle, tilt and glare dictates whether I get a good calibration or not.  If I don't get a good calibration then I can't access all the keyboard or all of the screen which frustrates me quickly.  Usually all I can do then is use the kindle reader.

I stopped eating at the end of November when I started wearing as much as I was able to swallow because I was no longer able to move the food from the front of my mouth  to  the back of my mouth.  I am still able to drink my Perrier. 

I also had an emotional breakdown at the end of November.  After spending four months in Bill's mancave and only a window that looks at the house next door and mostly blocked by a shrub I was sick of being isolated and staring at the same four walls.  So we moved my recliner out to the family  room where I am not isolated and have lots of windows to look out.  Waiting for our house to be completed has been more tolerable as a result.

Physically a lot has changed.  The muscles in my arms and legs continue to atrophy as he family roomy motor neurons die.  I can make small contractual movements but cannot lift them or extend them.  I cannot move my fingers at all  My cheeks have weakened so my mouth won't stay shut.  My mouth dries out quickly resulting in dried saliva leaving a sticky film on my teeth, tongue, and roof of my mouth.  During the night this becomes more of a problem when my mouth, throat and airways dry out and I start coughing until someone (Kim) has to get up, swab my mouth, and give me a drink.

My teeth and jaws continue to be a problem as my lower teeth are now digging into the roof of my mouth and shredding the gums behind my upper teeth.

My neck muscles have gotten very weak over the last few months to the point I cannot hold my head up.  This makes it more difrficult to use the eye gaze with the table stand.  I use a neck brace when I am on the toilet but it doesn't work well and my neck is often torqued at a large angle to the right when the aides don't set me squarely on the commode, which occurs 90% of the time.

I still experience constant muscle tremors and spasms in all of my muscles.  Lately my  eyes have been affected, making it that much more difficult to use the computer.

Dick's medical came by to let me try a head array to try to operate my power wheelchair but my neck doesn't have enough strength or mobility to operate the switches that control on\/off and chair mode selection (speed, up /down seat control, etc.).  I have pretty much given up on being able to operate the chair independently.

The house is getting closer to completion still waiting for kitchen and bathroom sinks and countertops.  Hopefully we will move in by the end of   March.  What we hoped would be an 8-week renovation will end being an 8-month ordeal. 

We are going to install some ceiling lifts to reduce and hopefully eliminate manual transfers that are hard on me and the aides.  I can barely lock my knees for a second or two before they start to buckle and the two aides have to bear my entire weight.   A round trip to the bathroom requires four manual transfers.