Skip to main content

ALS Appointment Update

The good news is that my FRS (Functional Rating Scale) remained the same at 29. Bad-ish news is that my lung function FVC (Forced Vital Capacity) went from 110% in January 2013 to 98% in April (today).

What's really going on? Head-to-Toe: Breathing is good, swallowing is mostly good (must be mindful, avoiding popcorn, small pills do not trigger swallowing), no drooling. Woo-hoo!

Cannot write (right-handed), fingers curl inward and tremor or trigger upon effort to use, much atrophy and muscle spasming, cannot raise right hand/arm, "frozen shoulder" resolved through massage therapy. Left hand beginning to atrophy and lose strength and dexterity. Employing speech recognition software to "write" with computer.

I walk with assistance, cane or walker. Painfully slow on stairs and shaky. Cannot recover from falls. Use power wheelchair in my home. No wheelchair van, yet. Can get severe muscle spasms in thighs, calves, and feet.

Eating requires assistance to cut food but I can feed myself with special utensils. Drinking using small light cups and narrow waterbottles. Restrooming requires some assistance.

Due to my level of progression, we have a friend moving in to help with caregiving around May.

In case you were wondering, Life is STILL good.
 
Labels:

Comments

Post a Comment

Popular posts from this blog

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...
3 comments
Read more

On-the-job Sass

I continue getting sass from one particular caregiver. He says, "You need to communicate with us." he continues to completely miss or dismiss the concept of I would if I could . It is part and parcel to having ALS, I am losing my ability to communicate and it is his job to assist me. Part of helping me, like it or not, is to learn my routine and anticipate needs, when possible. He misses the fact that I'm failing more every day and night time is when I'm weakest. It is extremely insensitive and arrogant to expect me to cater to his needs and expectations. Pushing me to repeat words or expound on a simple one word suggestion is physically taxing on my system, adding stress which further depletes me. Cuing is supposed to be caregiver's domain, not the patient's. Here is the situation, I am being changed. In the midst of the action, as seems to be his practice, he is sidelined asking me trivial, meaningless, but energy-sapping questions. Do I want my legs raise...
Post a Comment
Read more

Lashing Out

Fed up. Sick of hearing, "I'm sorry."  Apologies don't erase the pain you inflict on me. You pull my pubic hair. Your nitrile gloves pull the hair from my head. Not once in a while but day in and day out. You turn me in a manner that suits you rather than in a manner that doesn't stress my body. Why won't you use the pad and sheet to turn me as one unit? Instead, you allow my body to twist as you hold me one-handed. How good you are at your job. What part of "my muscles are dying" don't you understand?
Post a Comment
Read more