April 2011 - The ALS Association Greater Sacramento

Attitude of Gratitude
Page 6
Living on Earth, Living with Mirth, time for Re-Birth by Cathy Speck
I’m baffled, befuddled and operating with a teeny part of my brain.
The rest of my brain is busy reminding me to breathe, hydrate,
don’t lie down flat, and take my meds on schedule. I’m thrilled and
honored to have the opportunity to use my literary skills. I get to
die doing some of my favorite things. Sounds like a song. How
ironic.
My biggest concern I had after being diagnosed with ALS was losing
the ability to talk, sing and perform. Well, that time is here, and
I’m not dead yet. I can still speak, but go hoarse quickly. I might be
able to eek out a song at a wedding or funeral, or castrating ceremony.
I’d love to write something monthly, if I can keep up with the
deadlines. We’ll take it one day a time. I could write about many
facets of ALS, but these will be points of departure. From there,
it’ll flow into dying death after death after life. Living on
earth/living with mirth.
Every column will be fun, funny and honest, bare, vulnerable and
insightful. It’ll be rated “G” or “PG.”
“Hey, Cathy Speck, what will you call the column? Macaroni?” How
about: Speck Speaks — For Awhile.
sports, or being a
show-off and hollering,
“Hey Mom!
MOM! Watch me!”
I was climbing the
towering mulberry
tree and jumping —
while keeping my
eagle eye on lookout
duty for dog doodie.
CALS Linda Duval rockin’ with Mazie
and Sky Serrani
…The most common
form of ALS, called
Sporadic ALS, is estimated
to be 90-95
percent of the ALS
demographics. With
large SOD1 families
(like mine), researchers
have a better chance at following the cells, nerves and proteins
to gain more information about “what, when, why, how” the mutations
are activated. This was huge breakthrough, but that was in
1993. As you can guess, we need so much more money to keep the
research going strong.
as
Ham I am, and in German, my last name, “Speck,” means bacon/ham.
Did I just hear you yodeling, “old lady old lady heeee
whoo, yoohoo old lady oh oh uuu lady I diddle jey de hoeo?”
Which roughly translates to: “arrrrghhhh grrrrruffff,” or, “From
Speck’s Vista Point Spot.” Or “Checking in With Chatty Cathy.”
Please join me in striving to bring ALS awareness to the forefront.
Join hands and vocalize our needs so that the voice of ALS is not
silenced by the calls from so many of the more “popular” diseases:
Parkinson’s, diabetes, prostate cancer, heart disease, breast cancer,
leukemia, AIDS.
Anyhoooooo…I’m typo-ing (as opposed to typing) two, maybe
three fingers at a time, as I occasionally look out our patio door.
Thee daffodils smile back, and the gigantic fern begs me to come
out to play. (I would if I could, but we should have scheduled a
“play date.”) We have a small patio — yes, a cute, north-facing
patio small enough to be a large town populated by the many transient
gnomes who’ve sought refuge here.
Which has nothing to do whatsoever with my intended message.
What I wanted to type is this: ALS — amyotrophic lateral sclerosis
aka Lou Gehrig’s Disease — is not a popular disease. There is no
cure, and no cause has been confirmed. The biggest breakthrough
in research was the identification of a rare genetic mutation
(SOD1), which is known to cause some familial ALS.
This SOD1-type of ALS has been documented in only two percent
of all ALS cases, but that small population is perfect for researchers
to work with since they can follow…
Oh, brother, I’m not a scientist. I wasn’t even one of those kids
who played with chemistry kits. I preferred playing outdoor team
Please spread the news, sound your trumpets, bong your bongos,
wet your whistles any way you’re able and tell your congregation/friends/family/co-workers/dog
park acquaintances to take a
look at our regional office website: www.alssac.org
Thank you berry much. That’s a phrase our mom used when she
was teaching us how
to be polite. But she
didn’t say “berry.”
Now she’s buried in
the Davis Cemetery.
Gallows humor fuels
me.
By the way friends,
have you checked out
the Davis Independent PALS Cathy Speck & CALS Linda Duval put
Film Festival website?
their heads together to support ALSSAC.
It's an ALS Awareness
event, too. www.davisfilmfest.org