If you would have asked me seven years ago if I would be sitting at home writing a blog about living with disabilities, I would have told you that you were nuts. I was in the best shape of my life, running six miles a day, running half marathons, training for my first half Ironman. In what seemed like an instant cascade of events, the proverbial carpet was yanked out from under my feet. Now I’m not going to go into all the details because if you have read my blog, you have read about what I have going on.
Now what hit me harder than anything that I had dealt with, which has been a lot, came last November. I remember it as clearly as if it happened yesterday. I was sitting in a board meeting when my neurologist called. “Mason, we have the results of your DATscan. It is abnormal. Between that and your symptoms, you have Early Onset Parkinson’s Disease.” Say what! You mean the disease I watched ravage my dad, I have? I had to excuse myself from the board meeting. I couldn’t focus. I couldn’t think. I was only 47 years old. How could I have this disease?
According to psychcentral.com, The 5 Stages of Grief & Loss are 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. People who are grieving do not necessarily go through the stages in the same order or experience all of them. The stages of grief and mourning are universal and are experienced by people from all walks of life, across many cultures. Mourning occurs in response to an individual’s own terminal illness, the loss of a close relationship, or to the death of a valued being, human, or animal. There are five stages of grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book, On Death and Dying.
So I started doing research and reading everything I could. I joined several online support groups and found a local support group that meets monthly. I wanted to know everything I could about this disease. How long did I have to live? What symptoms could I expect? There were just so many unknowns. A good friend of mine who also has PD gave me some very wise advice. He said “you cannot think about what your life will eventually be like. Just worry about tomorrow, not ten years from now and get busy living TODAY.” This was very difficult for me. I knew what this disease could do. My dad died a horrible death. He was unable to swallow, eat, drink, or even talk. He couldn’t sleep, walk, or even speak at the end. Was this my fate? One thing I was told over and over again was that PD affects everyone very differently and symptoms can be very different from person to person. This did give me some relief.
To say that I have dealt with this diagnosis would be a lie but I am working on it. Every day I learn a bit more. I have seen people react very differently to this diagnosis. Some live in denial (me somewhat) and some change their entire lives. They put everything into their diet, exercise, and every part of their daily routine. I’m a little slower getting there. I have the passion to do it but circumstances have prevented me from making some of the changes I need to make.
One thing that I feel very grateful for is the support structure I have. Between my friends and family, I have a lot of people in my corner fighting with me. It has made the acceptance of this diagnosis much easier. If you don’t have close family to support you, find a support group and get connected that way. Just talking to others with this disease has a healing effect emotionally.
At first, I wanted to blame God. How could He do this to me? How is this just? Then I was reminded of verse in Romans that says this, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28 (ESV). I was reminded that God has a plan for my life and there were others that had a much more difficult than me. I had been having a grand pity party and I needed to get over it. I then needed to figure out how I could use my circumstances to help others. To get through the terrible symptoms of this disease that I was already suffering from: the tremors, depression, chronic insomnia, falling to name a few. This was an opportunity for me to serve others.
If you have been diagnosed with PD and are looking for more information, please go to my Resources page and look through the sources I have provided. Stay strong my PD warriors and keep fighting. There is more and more research happening ever day that could soon lead to a cure.