Guest blog:  Joel Eissinger

The day I was diagnosed with Parkinson’s Disease, I really couldn’t believe it.  My wife was the one who initially urged me to go to a neurologist.   She had noticed certain changes in me:  the way I walked, the loss of my sense of smell, and my more casual approach to life.  So there I was, sitting in the neurologist’s office listening to the diagnosis, but not really hearing everything that was being said to me.  At that time I did not have many questions to ask—I really did not know anything about Parkinson’s.  After an hour, I was given my medication prescription and an information packet with literature about Parkinson’s and I drove home — still in a state of disbelief!

It has been a little more than a year since that diagnosis, and I have some suggestions on questions that anyone who is newly diagnosed should consider asking the neurologist:

  1. Could you recommend any local support groups?  If support groups aren’t for you, ask where you can find others who have Parkinson’s.  Apathy strikes many people with Parkinson’s and they withdraw within themselves and their homes.  People are made to be interconnected with one another not just to survive but to thrive!  Resources, including other people with Parkinson’s, will help you on this new journey.
  2. Where do I find resources and how can I get involved in the Parkinson’s community?  I didn’t have any idea that an organization like Rally Against Parkinson’s even existed.  I found it through Rock Steady Boxing, and what a difference this organization has made in my life!  Instead of feeling isolated and alone, I met a whole new family–my Parkinson’s family!
  3. The goal of Parkinson’s Disease treatment is to help manage symptoms and everyone’s symptoms are different.  Depending on your symptoms, ask questions like:
    • Should I see a movement disorder specialist?  This person helps treat tics, tremors, and other involuntary movement that can interfere with your life.  This person can help you at any stage in your treatment.
    • What other specialists should now comprise my care team?
    • What role will my primary care provider play?
    • Do I need to go to a physical therapist?  How about an occupational therapist?  Dietician? Sleep expert?
  1. Where can I find reliable information about Parkinson’s?  You are making a big mistake if you have been diagnosed with Parkinson’s but are not actively pursuing learning more about this disease.  Use the internet but go to reputable sources.
  2. Besides medication, how else can I manage the disease?  After taking your medication, exercise is the next most important activity you can do to manage your Parkinson’s and lead the best possible life.  Exercise needs to become part of your daily routine.  And, if you have never been one for exercising, it now needs to become a lifestyle with you.  Here’s a tip: choose an exercise program that you will actually do.  Exercise can be fun and something that you can look forward to doing.  If you find it hard to self-motivate, join a gym like Forest Hill Health & Fitness, and find a workout friend or family member to share this experience.

Finally, I will leave you with this thought; Remember, you are not alone.  Yes, you have Parkinson’s, but so do almost one million other Americans.  My faith, family, friends, Rally Against Parkinson’s, Forest Hill Health & Fitness, and my medical care team have given me a greater quality of life: today, tomorrow, and into the future.

Note:  The author is a member of the RAP Board of Directors.