Finding the Keys to Living Well with Parkinson's

Sometimes we are given the opportunity to share our wisdom and experiences with others, to be ambassadors for dealing with Parkinson’s in a positive way. Because I speak on a variety of topics to Parkinson’s support groups, attendees sometimes email me with questions. I received one such inquiry asking me how I dealt with accepting a diagnosis of Parkinson’s. She was confused, had questions about taking meds and concerns about what she could do to be proactive. This is my response to this newly diagnosed Parkinson person trying to accept a new path in life. Since writing this response, I have created a presentation based on these ideas. I first presented this seminar at the 4th World Parkinson Congress in Portland, Oregon in September 2016. Here is what I shared with this woman who wrote me.

Coming to grips with having Parkinson's is not easy or quick. It takes time to deal with all the emotions it creates. First is shock (I have what?), then denial (this couldn't be happening to me!), then anger (life just isn't fair), then fear (am I going to get worse), but with time and patience you will finally reach the place of acceptance (OK, let's deal with it and get on with my life). I think you are still on this journey. I applaud you for reaching out to others who are walking in your "proverbial" shoes.
Our stories are similar although details may vary. Like typical Young Onset Parkinson’s Disease (YOPD) person, diagnosis takes time. Doctors are trained to look for horses, not zebras (common diseases happen commonly). I, and my doctor, thought that I had muscular stiffness and shoulder ligament strain for 2-3 years. YOPD usually predominates as stiffness and slowness - we often get the tremor later. But when I started to tremor, my doctor suspected that I was a zebra and he referred me to a Movement Disorders Neurologist. These specialists are highly trained to spot a true zebra. (mine did on the 1st appointment. She is great.) That was in 2008. I am now a PD warrior of ten years.

At the first appointment, I was given the option of meds or no meds. My MDN (Movement Disorder Neurologist) said the decision to take or not take meds really boils down to quality of life. Are you doing well, or are you stiff in the morning, tired in the afternoon and feeling sad by evening? I was and chose meds. I respect everyone else's decision, but I believe the meds have helped.
I was also referred to another doctor, who specialized in Integrative Medicine. He explained Integrative Medicine as complementary medicine approved by Western science. We spent the first appointment just talking. A few appointments later, he concluded his assessment, not with giving me a prescription to take to a pharmacy. Instead he gave me the 5 keys to living well with Parkinson’s. I share them with you:
1. Strive for Optimal Nutrition – Your body needs fuel, eat well, choose low fat, high fiber. Increase fruits and vegetables, they are full of vitamins, and drink lots of water!
2. Consider Supplements - Multi vitamins fill in for diets not optimal. Calcium keeps bones strong. Vitamin D, if your blood levels are low. Have your Vitamin D level checked. Mine was quite low, and this seems to be more common for people with Parkinson’s.
3. Exercise - AN ABSOLUTE MUST!
Parkinson’s is called a movement disorder, so we must move to keep the motor skills working. Strength, flexibility and balance are important items to preserve. I exercise at least one hour per day. Start with a stretching and walking and progress to more vigorous exercises from there. Join an exercise class. I teach Zumba dance fitness to others with Parkinson’s. The exercise is great, and the camaraderie is even better.
4. Practice Mindfulness – Pay attention

“Far too often, our progress is limited by our minds, not by our bodies."  – unknown author

Live in the PRESENT. The past is over. You cannot change it, so forget it.  Put it on a raft and send it down the river, just let it go. The future has not yet happened. Again, you have no control over it anyway, so why waste energy worrying about it. The Present is a gift - treasure it and accept it for what it is, appreciate this moment in time, as it soon will be the past. Also appreciate those in your current life that support and love you. They too are a gift.
5. Volunteer - The rewards are felt in the heart and stored in the soul. When you give, you help others but most of all, you help yourself. As you pay it forward, you nurture your own self-esteem and sense of worth. What you gain not only balances what you have lost, it throws out the whole scale.

I hope this gives you HOPE. Life is still good. CHERISH IT.

I end with one of my favorite quotes:

“My motto was always to keep swinging. Whether I was in a slump or feeling badly or having trouble off the field, the only thing to do was keep swinging.” - Hank Aaron    

Jane Busch, DDS was diagnosed with Parkinson’s in 2008. She left her dental practice and took up Zumba, which she learned how to teach and now teaches to others with Parkinson's. Jane was a speaker at the 4th World Parkinson Congress in Portland, OR.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®