31042 full
Persevering
Sex: M
Data Quality: 3 stars
ALS: 3 yrs
Wheelchair
Bulbar: moderate
Arms: severe
Chest: none
Legs: moderate

Persevering

Male, 42 years
NC, United States

Primary condition
ALS and 1 more
First symptom
Diagnosis
Deceased
Sep 10, 2012
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About Persevering

I was diagnosed with Bulbar Onset ALS at age 39. I have been married to my wonderful wife, Kelly, for 17 years and also have 2 terrific children, a son age 15 and daughter age 12. I am fortunate to have very supportive family and friends.

I worked for 18 years as a mechanical engineer and most recently as a project manager for a high-end residential builder.

I have always been very athletic and spent about 10 years racing bicycles to the semi-professional level and also have run marathons, endurance trail runs, etc.  I've read that athletic people are more suspectible to ALS and I wonder if the many years of pushing my body to the limit of endurance have helped set ALS in motion.

Still using what I've got, while I can (could) - April 2010 

 

Backpacking with my Buddy, Otis

 

 

My kids and I with Otis - Hiking

 

My wife and I

 

 My famly vacationing in Puerto Rico December 2010

 

My kids and I December 2010

 

Dr. Horton, from the CDC, and I meet at Advocacy Days. I am honored to be participating in the ALS Registry Meeting in September 2011 as a PALS representative!!!

 

Me on Capitol Hill during ALS Association's Advocacy Day, May 2011

 

Meeting SmoothS at Dec.2010 International Symposium on ALS/MND

 

Meeting PatientsLikeMe's Emma Willey October 2011:

 

My wife and I advocating for ALS on Capitol Hill January 31, 2012:

 

Participating on expert panel for ALS Biorepository program for National ALS Registry, March, 2012:

 

Talking with Senator Kay Hagan May 2012 at Advocacy Day

 

 

Activity

Comments: 1 update, 4 for others

My CareTeam

Member since: Apr 07, 2010
Last Login Sep 17, 2012

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