Living with ALS
I need to let you know that this is a pretty long, no really long, intro. And it isn’t even half of the story. This story is one that affects many people, not just me.
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 diagnosed with ALS in April 2014 just after I turned 52. For the previous 12 years I have been living with a damaged spinal cord called adhesive arachnoiditis. Prior to that I had a wide variety of jobs. I like to say I was a Jack of all trades and Master of none. The one thing I did master was loving people. I am a very optimistic person who loves life and lives life to the fullest, every day that I possibly can.
Many people have heard of ALS because of the Ice Bucket Challenge, but most still don’t know what ALS is. This link is a brief description of what ALS is.
When I was younger I 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). Losing the scholarship was one of the best things to happen to me, because I then had to pay for college. I got so much 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 travel. What a great opportunity to learn about other people and their cultures. Through various life changes(divorce) I finally came to the home state that I absolutely love, Arizona. This is where I came to faith in Christ. I grew up going to church, I was an acolyte in the Episcopal church in Atlanta. I still remember that I was the only one who would serve a funeral in the city. But through all that, I didn’t know what being a Christian meant.
I have always loved being active. I coached both of our sons’ little league teams I played tennis and golf. I loved hiking, even proposing to Karen on the back of Camelback Mountain. I made sure it was next to the one shrubby tree you can see on the camel’s back, just above the Phoenician. In 2002 I had to take permanent disability due to a failed back surgery, and eventually had 4 more back surgeries, but I still remained active within my limitations.
I took up 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 ever I built by myself. It isn’t to bad, except for a couple of spots that I know aren’t right, but Karen likes it and that is all that matters.
I started feeling weakness in 2010 while making the entertainment center, but attributed it to my spinal cord injury. Eventually that 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 myself (and there were, and are, MANY areas to improve and grow).. It is especially challenging being disabled on top of that. We started a blended family ministry for pre-married and newly married couples. That was a great place God put us and we are still blessed by our time doing that.
In 2012 I sold my woodshed and bought a recumbent trike. I rode rides of 20-30 miles. It was so awesome to sweat from exercise, not from pain. I was so thankful how God provided for the trike through selling the wood shop. The wood shop allowed me to make things for other people (mostly height rulers, really nice ones…Karen asked if I was ever going to make something for us). God was creating a patience in me that He knew I would soon need. I forgot to mention that I was praying for patience when I became disabled. Not quite what I was expecting, but it was exactly what God wanted I would eventually learn.
In 2013 I started falling and denting the granite countertops with my hard noggin. My left foot had been weak from the surgeries and the pain pump I have implanted in my abdomen deadened some of the nerves. It just seemed like it was related to my back, like everything had been up to that point. So I waited until I saw Claire, my back doctor’s PA in late November. She had me do an EMG and a CT myleogram. We still thought it may be a need to extend my fusion up into my ribcage so she referred me for a pre-surgical appointment.. Eventually, I had the appointment with Dr. Crandall and when he did an exam, he said it wasn’t the back and that I needed to see a neurologist.
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 and my foot drop and falls. I only hit my head on one countertop, so they were going to be safe. After all the tests and imaging, Karen and I 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. Karen had sent in a prayer request that we would get an answer to what was wrong. Boy, we got one.
After doing EMGs on 2 limbs the Dr. said she knew what it was and to meet her in the office. She asked what kind of insurance I had and I said “so it’s gonna be expensive then, huh doc?”. She said “Doug, you’re a typical male” and laughed. I have great relationships with my doctors. Probably from the peanut butter pies and brownies, but not this Dr since she was gluten and dairy free, just like Karen.
We were pretty excited, we were going to get the answer to what was wrong, FINALLY!!! She came right out and told us it was Motor Neuron Disease. I asked her to dumb it down for this typical male and she said it was known as amyotrophic laterals sclerosis or ALS, but better known as Lou Gehrig’s disease. I had no idea what that meant except that it wasn’t good. She did say that there was no cure and life expectancy is 2-5 years and to get into a clinic as soon as I could. I remember standing up, and walked to the window and came back and asked her if her daughter needed a human patient for her trial as I knew that ALS was what she was studying. She said I was incredible. I didn’t know what she meant then, but I think I do know now. She knows my faith and I responded differently than most others who get a death sentence. I know all of us die, we all have that disease called life.
We were stunned, to say the least. We wanted an answer and prayed for one, we didn’t expect this, but it was still an answer. When we got to the car, we prayed and thanked God for an answer, even though it wasn’t what we wanted. We prayed that we would be used by Him through our lives. 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. and LOVED 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 blessings we have, I have rededicated my life to God and to be used in any way possible to spread awareness and hopefully raise money and to share what He is doing in our lives.
We had an incredible Walk team that 1st year and every year since. We 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 frame made that says – ALS Love Life, LIVE LIFE! God has been and continues to be and always will be so good to us.
Another thing we have been able to do is travel. Having ALS has allowed me to take Karen to 2 of my favorite places in the country, The Great Smokey Mountains and Asheville and Yosemite. They are both 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, ALS families, 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. Chances are that I won’t, and that is ok. I have had 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 families 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.