Yesterday was an difficult day for me, it was an unwelcome anniversary actually. It was exactly one year ago yesterday that I was diagnosed with Parkinsons Disease. Debbie and I sat in my neurologist’s office after his examination, questions about symptoms and a review of several test results when he uttered the words I will never forget, “I’m sorry to say Richard, that your family doctor’s suspicions are correct, you have Parkinsons Disease.”. Of course the news hit us like a ton of bricks and made for one of the most difficult and conflicting days of my life.
Yesterday was certainly not an anniversary to “celebrate” which is one reason I am writing this on July 5th and not yesterday. Instead I did something yesterday to “mark” the event by doing something decidedly “anti-parkinsons”, I went for a 20 km bike ride. Since exercise, and cycling in particular, has been found to be neuroprotective and can actually slow the progression of the disease it seemed like an appropriate way to mark the day.
So here we are, one year later and looking back over this time I have to say that I have not handled things as well as I could have or should have. I have allowed this disease to affect me in more ways than I should have and have not coped as well as I would like to have done. It has essentially invaded every aspect of my life. Work, social, home, sleep and of course my health. Though I have attempted with all the energy I can muster to try to prevent it from controlling me, I have failed in more ways than I can count. Does this mean that I have given in? No, I cannot give in or give up, instead I can learn from my mistakes and fight back.
A few of my greatest challenges this past year have been with engaging socially with friends and family, physical challenges, stress and overwhelming fatigue, depression, apathy, daytime sleepiness, and memory all a part of and symptoms of Parkinsons. In fact over the last year, several physical changes have resulted in forcing decisions that I had hoped I would not need to make for a few years yet.
Because I never know how I will feel from more than one hour to the next, short and long term planning presents challenges for committing to social engagements. This has dramatically interfered with my social life and I have pretty much shied away from most social engagements over the last year. They are especially difficult as I often have to explain things about my condition when symptoms such as tremors, sudden contorting cramps (dystonia), sudden bouts of sleepiness manifest themselves. Social gatherings with other PD patients is no problem as I don’t have to explain anything or try to hide the tremors or other symptoms. Decreased strength, stamina, pain have all made it more difficult to engage in physical activities. Even my beloved cycling has been adversely affected and has prompted another decision I was not expecting in order to be able to continue this all important activity. This will be covered in another blog post for reasons that will be clearer then. Work and technology has become more of a challenge related to low energy levels, fatigue, lack of concentration and increasing inability to effectively multitask. The latter has always been one of my strong points so it is especially dis-heartening to lose this.
Needless to say, a lot was going through my mind yesterday as can be seen from the above. One important conclusion I have drawn is that for the next year I need to do better, and tackle these issues head on. With the ever present help, encouragement and love from my wife Debbie, this would not be be possible and would make life most unbearable. She gives me the strength and love to take each day at a time and to fight the battles I can win and is largely responsible for the smile on my face each day. Also my faith in God helps me each day to be thankful for the many blessings I do receive, to enjoy the victories however small they may be and He gives me the strength to keep fighting. The staff of the Parkinsons Disease Society of BC and our monthly support group have also helped me in countless ways, most importantly to know that I am not alone.
So here’s to hoping and praying that the next year I will cope better, one day at a time.