What has your journey been like since diagnosis?
The day I was diagnosed with Parkinson’s was one of the hardest days of my life. The neurologist said that it wasn’t a death sentence, but rather a life sentence and that within five years I would have no quality of life remaining. Hearing the news so bluntly was like a shock to my system. Though I have always been a positive person, this news was so negative that I began to feel incredibly low. However, thanks to my strong faith, I awoke the third morning after hearing the news with the knowledge that I wasn’t dead yet and the resolution that I would get up and live my life.
Since that morning, Parkinson’s has meant two things for me. First, while I accept the fact of having the disease, I do not passively accept all the things it could entail. Second, I see Parkinson’s as a new challenge. To successfully meet this new challenge, I had to reject the thought my life was over and instead live my life to its fullest. To do that, I needed to learn a lot more about Parkinson’s. Educating myself about Parkinson’s has allowed me to make changes in the way I respond to my symptoms. I have also learned so much about improving and maintaining my quality of life for as long as possible. One other thing I learned in my Parkinson’s research was that there was as great a chance, if not greater, of dying from something else. In 2014, I was diagnosed with metastatic prostate cancer and was told that I wouldn’t live to see 2015. I’m still standing.
I was serving as an assistant pastor when I was diagnosed in April 2000, and soon after I met my wife. She was an incredible presence in my life and an amazing care partner. In 2005, it was thanks to her that we took a 16-day, 5000-mile trip through 12 states during which I drove all but 30 miles. Together, my wife and I also visited many people who were suffering from terrible illnesses and shared our story about God being so gracious to us even through our struggle with Parkinson’s.
After 15 wonderful years of marriage, my beloved wife died in a tragic mishap, which affected me greatly. However, by the help of God, my faith, my three wonderful daughters and many special people who have come into my life, I have been able to overcome the grief and press forward. I have remained very involved in my community, both in my ministry and through online support for other people with Parkinson’s.
How do you live well each day?
I follow a daily exercise program and spend time preparing for a 5K benefit by walking and jogging. I am now able to go three miles in 39 minutes, and I am striving for more. I also have a 15-passenger bus with a handicap lift with which I have started a non-emergency, free transport service for people with no insurance coverage needing local transport. I am also very active in an online Parkinson’s support site, daily posting inspirational messages and responding to other posts, comments and requests. One thing I recommend to every new member whom I have the opportunity to welcome is to request a copy of the Davis Phinney Foundation’s Every Victory Counts manual, which I believe every person with Parkinson’s and care partner should have.
My journey with Parkinson’s has been no cakewalk. I still suffer from intense daily pain, I work with a speech therapist twice a week for speech and swallowing issues, I have constipation and digestive issues, sleep issues, hallucinations, vision problems, loss of smell, orthostatic hypotension and 95% hearing loss. Despite all of this, however, a positive attitude through faith in God, my support team of family and other special people in my life keep me motivated to maintain a desire to live well.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
My primary wish is that the neurologists, by whom I have received treatment, would have provided more information, resources and support to help me transition to this new stage in my life.
ROBERT ALEXANDER’S PHILOSOPHY
What do you wish everyone living with Parkinson’s knew about living well?
Many people are not told by their neurologists that attaining a higher quality of life has a great deal to do with the individual and their attitude. I wish that more people with Parkinson’s were made to see that living well today is possible and that the tools and resources that they need to help attain that are available.
SHARE YOUR VICTORY
Each month, we spotlight people from our Parkinson’s community who embody living well today – what we call Moments of Victory®
Your story, like Robert’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.