I want to
tell my classmates what’s been going on with me, since I was absent from our
last reunion. With a little help from Noelle, here’s my story.
About three
months before our fifty-fifth reunion, I started having cramps in my legs and
saw a physician when we got back, mainly because my legs were getting weak. The
MDs did every test in the world for the next year with no answers. Finally,
last June, they diagnosed me with ALS, the PMA type that 90% of people with ALS
have: progressive muscular atrophy.
From Noelle: Motor neurons reach from
the brain to the spinal cord and from the spinal cord to the muscles throughout
the body. The progressive degeneration of the motor neurons in ALS eventually
leads to their demise. When the motor neurons die, the ability of the brain to
initiate and control muscle movement is lost.
Needless to
say, the initial diagnosis was pretty devastating, and I’ll admit I was deeply depressed.
Then last
August the FDA approved a drug for ALS – it doesn’t cure the disease but slows
down the progression. I started in October on the medicine. It is administered
via a venous port each day for two weeks, M-F, and then two weeks off. I had to
go to an infusion center to have this done, and it took three hours each day
plus travel etc. so your day is pretty much eaten up. Luckily the drug has no
side effects, but all that time was a pain.
Then someone
told me to check with the VA. Because I’m a vet, the military should cover the
treatment, and I discovered with VA coverage I could be treated at home. A
nurse comes to put a needle in my port on Monday, and Elaine just hangs the bag
with the medicine each day. Then the nurse takes the needle out on Friday. Easy
peasy! And I have time to do other things.
My VA
benefits also got me a van and a power wheel chair. I can drive the van with
hand controls or Elaine can drive with normal controls and I can ride my chair
into the van and travel with her.
I don’t know
whether the meds are helping, but my MD who works with vets with this type of
ALS told me the usual life span for ALS-PMA is 2-5 years, but I have a tentative
diagnoses of ALS-FAMILIAL which only 5-10% of ALS patients are diagnosed with.
This type progresses from the legs to the arms, but not to the chest and
breathing. If there is any good news in all this, it’s that this prognosis has a
life span of 14 years from onset. With
the meds, it could be longer.
The VA is
redoing my house – the doors will be widened, the floor of our lanai will be
raised to house level, and the bathroom will be done with a ‘roll-in’ shower
that I can use a special bathing wheelchair and ride it into the shower. It
still sucks, but not as badly as at first. I’ve had the wheelchair for 10
months now, and now have a HOYER lift so Elaine can get me out of bed to the wheelchair and back
in again.
The good
news is that the disease doesn’t seem to have progressed much in the last few
months.
So that’s my
story, friends.
