I don't remember just when I started occupational therapy with Mitzi W, but I do remember a number of times falling back on my bed pillows, exhausted, from just trying so hard to make the muscles in my fingers move….but try as I may, they wouldn't.
In time, I could raise my arm about shoulder height and was able to use my fingers well enough to pick up cough drops by the little paper wrapping with my index finger and thumb.
I remember the time when I first was able to clap normally.....to
use both hands.....instead of just beating on a flat surface, or beating on my leg in order to make the clapping sound. And then when I could first cup my right hand enough to help rinse my face.....instead of trying to rinse with just one hand.
How does it feel to be paralyzed?
Hand & Fingers - Feels like rubber bands around hand & fingers that prevents them from being able to move.feels heavy. Feels dead. Not a part of my alive body. Colder than other hand. Very little feeling when touched. Can't tell whether I have moved it or not; have to look to see.
Arm - Numb & heavy. Feels like rubber bands around. Colder than other arm. When trying to play tennis the arm bounces around and won't stay put so I stick it in the elastic of my pants to hold it.
As far as balance is concerned, it's like having just one arm.
Mouth -Feels funny when touched and can't tell quite where. Feels numb. Feels swollen, bigger than other side but doesn't look that way.
Can't eat a carrot, apple, corn on cab, etc.
Will bite lip while eating.
Leg - So tiring. Feels heavy.
Can't feel what position it's in until you look & see .
I have been fighting my PPMS for 5 years with p.t. and working out which is the reason I can still walk short distances. Yes, I have a cane and a scooter but only use them when my balance is really bad like in the heat. So, I have been feeling quite proud of myself and pretty strong until another problem reared it's ugly head! I now have a lot of spatial issues...more than the usual clumsiness...like missing my mouth with the fork/spoon or cup and trying to get dressed. My neurologist suggested sending me for o.t., I told her I wanted to check into my insurance coverage first. I have Medicare + Blue plan D which means a $30 copay per visit. Ok, so if I was to go even 2 times a week, that is $240 a month, plus the gas to go 20 miles one way to downtown Grand Rapids and parking. The folks who really need it can't afford it when living on SSDI. Plus I live alone with no one to help me. Do our docs really have to wonder why we get depressed?! It is MS's fault in a round about way, it is things like this like only add to the fustration we already have.
Unfortunately there is no simple solution. I just keep on keepin on the best I can but some days it's so hard. Sorry to vent but I know all of you understand.