My Journey with ALS

My name is Doug and I am married to the most wonderful, and patient woman, Karen. I am also a very proud and happy father and papa. I was 52 years old when I was diagnosed with ALS on April 8, 2014. For the previous 12 years I have been living with a damaged spinal cord. Prior to that I had a wide variety of jobs. I like to say I am a Jack of all trades and Master of none. The one thing I did master was loving to work with others. I am a very optimistic person who loves life and lives life to the fullest I possibly can.

When I was younger he faced some adversity, but channeled it into athletics, eventually going to college on a baseball scholarship…which I lost, because I thought I was hot stuff (I wasn’t). It was one of the best things to happen to me as I then had to pay for college and got a lot more out of it since I was investing in myself.

I have lived on both coasts and worked all across the country and done some international business. What a great opportunity to learn about other people and their cultures. Through various life changes I came to the home state that I absolutely love, Arizona. This is where his faith as a Christian has matured.

I love/loved being active. I coached both of our sons’ little league teams, played tennis and golf. I loved hiking, even proposing to Karen on the back of Camelback Mountain. In 2002 I had to take permanent disability, but still remained active within my limitations.

I learned woodworking and enjoyed making things for others. I finally got around to making an entertainment center for our own home. It was the last thing I built. I started feeling weakness in 2010, but attributed it to my spinal cord injury. Eventually the weakness took my ability to do woodworking away, but I still wanted to be active and remained positive.

I started meeting with people facing disability and/or back surgery. I also worked with blended family couples since our family is a blended family, which brings unique opportunities to improve himself. It is especially challenging being disabled on top of that.

2014 was a life changing year, as is every year. We had been looking for answers to why I had a lot of atrophy in my left calf. Previously everything could be attributed to the spinal cord damage. My back surgeon said it wasn’t back related and sent me to a neurologist. After all the tests and imaging, we went in to have EMGs done on all 4 extremities. We had been praying for an answer and were looking forward to getting one on April 8.

After doing EMGs on 2 limbs the Dr. said she knew what it was and to meet her in the office. We were excited, we were going to get the answer to our questions, FINALLY!!! She told us it was Motor Neuron Disease, or amyotrophic laterals sclerosis (ALS) better known as Lou Gehrig’s disease. I had no idea what that meant, but she did say that there was no cure and to get into a clinic as soon as I could. She said overall life expectancy is 2-5 years. We were shocked, to say the least. We wanted an answer and prayed for one, but did not expect this, but it was an answer.

When we got to the car, we prayed and thanked God for an answer, even though it wasn’t what we wanted. The next few days were a blur and even to this day I can’t recall much about those days except that many people cried for us, prayed for us and reached out to us. I have not felt love like that ever in my life, and the loving has not stopped. I think because of that, and the many blessing we have, I have dedicated my life to God and to be used in any way possible to spread awareness and hopefully raise money.

We had an incredible Walk team and had people come from all across the country to the Scottsdale Walk. How could I not feel loved. We are very fortunate to have the most incredible support team here in Phoenix. They invited me to help lobby Congress for ALS Advocacy Day. My clinic also included my story at a dinner thanking their donors.

If my story can help raise awareness then that is great. If I can be better used to drive people and visit others with ALS that is great. I will do whatever I can, for as long as I can, to help raise awareness of this disease. Sometimes, actually quite often, people are shocked at my positive outlook when I tell them I have ALS. I guess I could wake up sad and bitter, but why! I had a license plate from that says – ALS  Love Life, LIVE LIFE!

Another good thing we have been moved to do is travel. ALS encouraged, or drove, me to take Karen to 2 of my favorite places in the country, The Great Smokey Mountains and Yosemite. They are so beautiful. I am not sure we would have gone to either had it not been for the ALS, so another blessing from it.

Thank you for your support and encouragement. We need help both financially and in spreading awareness & understanding of what ALS is and isn’t. ALS is terminal, but it isn’t contagious. ALS has very limited treatment options (which I didn’t tolerate well), but, well, there is no but, there are no other treatment options.

My desire is to live a long time and see my grandkids get married. The chances are I won’t, and that is ok. I have a very full and blessed life and do not regret where I am with ALS. My pain is for my wife, kids, other family and friends. I know they hurt for me. I hurt for them. Please help the family and friends of people afflicted with ALS. They can use your love, prayers and encouragement.

Thank you to everyone who has helped us along the ALS journey.