Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

Hi, my name is Joel and I have been married to the most fantastic woman you could ever know for 39 years, her name is Christine. We have 4 great kids who are all married, have families and doing extremely well. I have been a workaholic all my life, usually doing 3 to 4 jobs simultaneously.  It was fun when I was younger but as I got older it was tiring and the projects I was involved in were much more challenging and stressful.  Finally my health started to suffer......guess what...ended up with ALS.  At least it forced me to start slowing down.  Now I am learning to enjoy life and take time to "smell the roses."  We  are enjoying time with our children and their families. We would like to be more involved with our Church but it is impossible to get out now.

I was diagnosed in August 2005. It was affecting my hands starting with my left. I was losing dexterity and strength which was interfering with my work in the computer industry. I was no longer able to enjoy my favourite hobbies - woodworking, boating and playing my keyboard for the worship team in Church.

It quickly went from my hands to affecting my diaphragm, thus affecting my breathing. I was not prepared for this as I always expected my ability to breathe would be the last thing that would be affected. With this new development we decided to move closer to the medical help I would need as the disease progressed. So we packed up and moved close to Vancouver, BC.

I started using a Bipap at night in early 2007. By late spring it was becoming obvious I would soon need a feeding tube (PEG) as my ability to swallow was being compromised and my breathing was getting worse. So before things got critical I made arrangements to get a PEG and in July 2007 I got one.

All went well for the next few months before the progression started again and by spring 2008 it was clear I needed a tracheostomy and ventilator to assist my diminishing ability to breathe. On July 9, 2008 I went into the hospital and 7 days later came home with a trache and vent.

I also started using a power wheelchair full time in the spring of 2008. By the summer of 2009 a lift became necessary for transfers.

To this day I can still talk somewhat but I am very hard to understand. Can also use a computer with the help of specialty aids and have a speaking program that talks for me.

We have had some ups and downs along the way but have made it through them with God’s help and the support of our family.

Life continues to be good and worth living.

ALS does not have to be Fatal