Comments on: The Words We Use

By: Kathleen Mackenbrock

Kathleen Mackenbrock — Sun, 25 Jan 2015 17:52:01 +0000

Dear Sarah and Fellow ALSers,
How right you all are. I don’t think of myself as having a terminal disease, I just think of myself as SLOW.
My DX started out as PLS, then after 2 years I was DX’d as ALS. I have ~ upper motor neuron dominant ALS. In short ~ my disease is a slower progressing ALS. As of today my legs are weak, I walk full time with a walker, my hands and arms are weak and my speech is very very slurred.
All I can add is to keep praying for God’s graces. He never disappoints. It’s the ONLY way to truly accept this terrible disease, be inspired to work hard at keeping our muscles active, to be grateful for what we do have & can still do & to live as an example of a Christ follower.
I am humbler and more focused on what this “gift of life” is all about. The good faaaar outweighs the bad & my transformation has not been easy. This is a daily, sometimes hourly or even moment to moment struggle. And I still have a loooong way to go.
Last but not least The Ice Bucket Challenge has elevated ALS awareness and funding beyond compare!
Blessings to all who share this disease.

By: Richard Thiede

Richard Thiede — Wed, 14 Jan 2015 05:46:16 +0000

I rode my Look 585 to Forbes Norris, adorned in matching racing garb….carried my bike in. I was late! Almost 4:00 pm….a beautiful typical October afternoon in the city…..Dr. miller, who I instantly bonded with ( his carbon fiber bike parked behind his desk) welcomed me…..directed me to the EMG exam room on the right…after inserting the probes into my upper and lower extremities….an hour passed….he returned!
” do you want it strait and simple? “He asked… I smiled ” shoot”
“You have ALS”
A single tear fell

My wife was working at Google in Mt.View that day….I had to ride down to Cal Train and meet her….dinner in the city!
We get to the restaurant, she asks how it went….I told her
She pushes me ” shut up” ” give me the paperwork”
I’ll never forget how she looked….she never even considered this could happen the me….superman! US Marine….ride 25 miles a day

We wrapped our arms around each other like never before
” the Cry”

I learned so much since then
As will you
My heart has grown
My ego shrunk

You have a gift …to make people understand
Write
Love
drink wine ( Rutherford Valley)
Enjoy every moment

There are only a few of us
Make it count

By: Lauren

Lauren — Fri, 09 Jan 2015 22:31:13 +0000

Sarah,

I have had that kind of day today where I have a pit in my stomach and the feeling of a burden that has crushed my spirit and made me feel ill. In the scheme of things in life though, I have nothing to complain about other than a simple rough patch in life that needs a solution. Reading your blog always fills me with happiness and I think about you so often after reading that piece you did for a magazine shortly after your diagnosis. (I forgot which one). I admire you in so many ways and I wish you continued peace as you go through this journey. Hugs