Monday, December 3, 2007


December 3, 2007

I woke up to my legs feeling like never before. I am walking w/ out hinge in my step for the first time in 5 months. I was flying through my physical therapy this morning. Feels great, I just hope there is some longevity to it.

Chris from Tennessee arrived the other day with his family. He is an SCI (spinal cord injury). He is a positive kid. He has the coolest electric wheelchair-it goes up the stairs by itself.

Michael from the UK came in last night w/ his mom and dad. He is the youngest person on record in Europe and they think the world to have-you guessed it-ALS. He is 20 years old and an ATHLETE. Yeah that’s right-20! He told me that he thinks the symptoms started as far back as 17. He was diagnosed October 2006. It started in his legs and spread to his hands and shoulders. He gets around w/ help. GREAT family. It seems as though I'm seeing a pattern emerging. Like for instance, Boris and I, we lost OUR ability to articulate but we get around fine. With Mike (Toronto) and Michael (UK)-they have there ability to articulate but they need help getting around. I guess you pick your poison or the man upstairs does IT FOR YOU. Either way it leads to the same mysterious highway. I can’t shake that he’s 20. I have lived a great life-if it’s my time-I have but one regret (KMR) otherwise I’m okay with dying-as harsh as that sounds-I swear, I’m okay w/it. And don’t think for one second I’m throwing in the towel-BECAUSE I'M NOT! I am not afraid to die-is all. According to my doctors and the definition of ALS-I’m dying right now as I write this. My point with this is -- I have nothing to lose here. I have to fight along w/ everyone else and see the outcome through. Whatever that is and accept it.

But he’s just a kid. That’s NOT fair. I told him youth is on our side and to ride that wave. Exercise (PT, OT and acupuncture) and eating right are the keys to keeping this two-headed monster at bay. And the human mind does not get enough credit-- for it can undo anything if you believe. I really believe that. Like I always say to my mom, “if it doesn’t mind it does not matter”.


The best way to prepare for life is to begin to live


Gina (Santoro) Kohr said...

Reading your blog today brought tears to my eyes... I can't tell you enough what an amazing person you are. You have a spirit like no one I've ever seen before. Keep fighting and keep living.

Anonymous said...

The youngest spontaneous case of ALS I heard about was a 12 year old.

Anonymous said...

Hi Drew
Have just got my computer going againafter three days.
Have tried to blog you last Thur & Fri but I dont think they went.
I was saying thamks for your pics of the apartmnets out back. They are certainly coming along!
I believe they are being built for unatatched nurses & doctors.
Your writings are inspirational Drew, keep it up.
Hope this arrives and bye for now
Mike & Shelagh.
ps. I also asked when are you due to leave, also, have you caught up with Hazel & jody's Blog??

Anonymous said...

Hi Drew,

We wanted to send a couple of thank yous your way. You are there with a wonderful couple, Donna and Mike, who are Aunt and Uncle to my two girls. First thank you is for the analogy because, as you know, no matter how hard we think we know, we don't. Second thank you is for being you and sharing you. You really are inspirational and we wish you every day full of love and happiness. I could go on and on here but I'm a little bit of a sap and would most defitinely end up in a meltdown which I'm sure you don't need! LOL! Please say hi to Auntie Donna, Uncle Mike and Ryan from Karen, Dave, Chantelle and Delaney. We send our love to ALL of you. Keep up the are doing a great great great great job!

Love from the crew from Canada.....who are now snowed in for the day!

Kevin said...

Hey Drew!

Your inspiration and strength is a source of strength for all of us. Thanks for sharing your experiences so openly and I am grateful for the opportunity to stay connected during your journey. We will see you soon! By the way, I wanted to find out if you recall the names of some of the guys you used to play hockey with at Twin Rinks. I joined the Circus in Tier 4 and have been subbing for the Goal Diggers and Bandits as well. We kicked butt last night vs. Traktor, 9-2 and I had you out there with me!!!


Anonymous said...

Hi Drew,

I am Donna's (Mike-Toronto)sister Shelly and I first want to say what a amazing young man you are.

I appreciate your courage and commitment on educating as many as possible on ALS and Stemcells.

I thank you for your openess of your ups and your downs, but most importantly your inspiration to look at life just a little differently. To Live...

Over the last year I wondered how Donna and Mike were going to manage, I wondered how I could help, I wondered what the future would bring. I have realized that things just come naturally with family and we will be there for them. To enjoy today, and tomorrow when it gets here.

Please keep up the great work on your journey--kick ass--keep fighting--keep living.

Will continue to read your progress.
Shelly from Canada

Anonymous said...

I heard this leg of your journey has come to an end.
Good Luck to you in whatever the stars hold for you next.
Be well, be Drew.
Lesley (from Canada)