Feb 25, 2019 Latest post:
May 30, 2019
Back in 2007 I first learned of Caring Bridge when a dear friend of mine found he had colon cancer and wanted to find a way to share information with people. He fought a brave fight and passed away three years later. I’ve had the good fortune of never having to use Caring Bridge for myself or for any family members because I’ve lived an incredibly blessed life that has been remarkably trouble free. But now I find myself in a position where I think it’s important for me to get the word out about a physical challenge that I’m having and do it in a way that will allow lots of people to access the information and allows me to keep people up to date and not accidently leave people out. So I’m going to start my own Caring Bridge experience.
Back in 2016 I had the good fortune of transitioning the ownership of my business to a great company called Anchor QEA, a national environmental engineering firm, renowned experts in many areas. 2016 was a really challenging year for me to keep my various projects going, keep my own small business operating, and at the same time negotiate and close on the business transaction.
During 2016 I noticed I had leg cramps and muscle twitches. It was like a nervous eyebrow, maybe some people have experienced. I really didn’t think much of it, just assumed it had to do with the stress of the business transaction, general fatigue, and the fact I’ve always had tight leg muscles. So at the end of December 2016, I closed on the business transaction and joined the Anchor QEA family.
On January 9, 2017 while skiing with my kids, Will and Lila, I took a hard fall and landed on my left shoulder as well as hitting my head on the ice. I had a helmet on, of course, but I sprained my clavicle and probably partially separated my shoulder. It hurt really badly and for the first time ever, I quit skiing, took the day off and sat in the lodge. A week later I flew out to Oregon to celebrate my Mother’s 95th birthday. A week after that I went to Washington DC and did the march on Washington. Both of those were pretty rigorous events and I really had no great side effects so I figured my ski injuries would heal up just like previous ones had.
Around March or April my shoulder just wasn’t healing well and my left arm was losing a lot of muscle. I was concerned and saw my general doctor who referred me to a neurologist. Throughout the summer of 2017, I had a variety of tests at multiple locations, brain and muscle scans of all kinds. They found that I have severe stenosis, or pinching of the nerves, in my neck and for a while thought that might be the cause of my problems that by this time included pretty significant loss of the use of my left arm and decreasing use of my right arm.
So, fast forward to January 2018, the doctor I was seeing at UNC Chapel Hill said they ruled out every other potential cause of my challenges which left them with an Amyotrophic Lateral Sclerosis, ALS, diagnosis also known as Lou Gehrig’s Disease.
I won’t say I didn’t believe it and I won’t say I was freaked out, I was just stunned and didn’t think that could happen to me.
In February, 2018 I went to Mayo Clinic in Minnesota and over a four day period, repetition of many of the same tests, they confirmed the original ALS diagnosis.
ALS is a degenerative neurological disease wherein for no known reason, the motor neurons stop functioning and quit sending signals to the muscles. The muscles then atrophy, wither, and become so weak they can’t function. The disease generally progresses one muscle set to another, usually starting in the limbs migrating into the core. Eventually it reaches the point where the total diaphragm becomes affected and the diaphragm atrophies, ceases to function and I will eventually suffocate. In the meantime I slowly degrade.
That is what my two years have been since my ski accident in early 2017. At this point I have no real use of my left arm. My right arm has maybe 10 percent use. My legs are able to steady me in a standing position for a minute or two at a time. I can, with assistance, and only with assistance, shuffle from one seating position to another. I can get from a chair to a wheel chair and from the wheel chair to the bed. All my transportation now is by wheel chair.
In the last couple of months I’ve taken on almost full time care givers. My wife, Nancy has been my sole care giver up until late last year. Only recently have we begun to bring in caregivers from the outside. Nancy still continues to do a phenomenal amount of work taking care of me. I can’t begin to express how grateful I am to her. I thought I loved her before, but I don’t even begin to understand the depths of my love for her.
So one of the things this disease has the potential to take away is one’s ability to speak. This is one of the things I’m in the midst of battling right now. I am grateful I can speak today. I am dictating this and my loving sister is typing this up for me and I appreciate the fact that I can speak. I never even considered the ability to speak as anything but commonplace and just the way things should be. Now I consider it a wonderful gift.
So I have so much to be grateful for. I am blessed in oh so many ways. Maybe I will share some of those in future Caring Bridge posts. But for now I just wanted to get the word out that we are, my whole family, my whole team, in the throes of this disease. It is hard to predict just what the future will hold. I have tremendous faith that what will be will be. I will do everything I can to slow the progress and reverse the damages that have occurred. But, truly it’s out of my hands. I have to trust that if I am to be healed, a much more powerful force than doctors or positive thinking will need to intercede. Life is good. Life is special. I have lived and continue to live a very blessed life.
If folks want to reach out to me via this Caring Bridge page I will do my best to respond and if I don’t get back to you right away, I appreciate your patience.