Tomorrow, James Parkinson‘s essay will be 200 years old. Since his discovery, modern medicine has made strides with L-Dopa and Carbi-dopa breakthroughs that have become the long-standing gold standard of regimens. Not to diminish the importance of the Levadopa breakthrough, but that was over a half a century ago.
New drugs and procedures are slowly trickling out, but no one drug that I know of has impacted Parkinson’s disease as that of L-Dopa. To this very day, since my 1991 diagnosis, I have found benefit from this most amazing life-changing drug. I am very lucky to report that my dosage, even after all this time, is a lowly 3 pills (25/100) a day. I aim to keep my pill consumption to the utmost minimum, but only time will tell.
I am hopeful but impatient as I plead with any pharmaceutical company, researcher, doctor, or anyone connected with creating new innovations to the neurological world that a huge need is there, right now, and an escalating problem that will impact so many. I would offer detailed numbers, but at this time, as we have no hard numbers, for lack of a registry devoted to Parkinson’s patients, the numbers just aren’t gathered, yet.
On World Parkinson’s Day (4/11/17), like millions around the world, I will be participating in #UniteForParkinsons. Please join us to spread awareness via social media to the world about Parkinson’s disease. Visit https://www.worldparkinsonsday.com/#world-parkinsons-day for more information!
It is April and that means it is Parkinson’s Disease Awareness Month!
Everyday ought to be Parkinson’s Awareness Day! For each and everyone of us who lives with this illness, we know that our awareness is real and constant. Now, bring that awareness to those who you encounter or who are less familiar with this illness. Too often, much to my amazement, I meet people completely unaware of what Parkinson’s is and what it can do. We have got to do a better job of telling the world about this illness, and what it is all about.
I refuse to mix politics and ethics. I try to keep my nose out of politics on this site and provide my readers with a perspective that informs and allows you to make your own decision.
I have seen the life-changing impact that Meals On Wheels has made and continues to make on lives. Just the thought of erasing a program as important as this one, is heartless, cruel, and the sign of a system that is out of touch and totally unfamiliar with real human needs.
To reduce funding for the FDA and the NIH reduces our hopes for a speedy breakthrough or drug development. Our health matters and many of the best minds in research and future developments come from these organizations.
The elimination of the EPA could cause numerous devastating changes and have even more repercussions on climate change and various environmental factors that impact genetically sensitive people. The future of the animal kingdom on this planet is in even greater jeopardy, than it is right now.
Speak up! Let your voice be heard!
It is so important to share your story and how governmental decisions impact you and those you love.
Davis Phinney knows how to inspire an audience! I have had the privilege of seeing and hearing him speak on his dealing with early onset Parkinson’s disease several times. Davis is an Olympic Bronze Medal winner in cycling. He has achieved more wins – 328 victories in all – than any other US Cyclist.
The insight of Davis’ perspective is truly inspiring and a great way to begin Parkinson’s Disease Awareness Month. I hope that you enjoy this interview and will share it with others facing Parkinson’s.
I want to thank Davis and everyone at The Davis Phinney Foundation for allowing me this opportunity. What a great way to begin Parkinson’s Disease Awareness Month. I encourage you to learn more about Davis’ Foundation and the upcoming Victory Summit in Richmond, Virginia on May 19th, 2012.
1. How has PD changed the way you view life?
PD has had a significant effect on me – on my view of life and my place in it. I am much less likely to take things for granted than I used to be, and I’m much more ‘present’ for, and appreciative of, positive aspects to any given day.
2. What has PD taught you that you didn’t know before your symptoms?
It has taught me much about living with disability and disease that I wouldn’t have otherwise learned – and that has led to greater awareness, understanding and empathy – which I view as very positive and grounding.
3. What is your advice to newly diagnosed PD patients?
My advice would be to immediately check out the Every Victory Counts (EVC) manual! being newly diagnosed with this disease, one faces an uncertain frontier, and there may not be a full spectrum of resources or the right resources immediately at hand. We work hard to keep the information in the EVC manual relevant and highly applicable – and based on highly positive feedback from the Parkinson’s tribe – we’re filling a void. So EVC is a good starting point as well as accessing the local Parkinson’s community for resources, support and connections available in the immediate community.
4. What do you do on a daily basis to fight your Parkinson’s disease?
I start each day with a smile in the mirror an affirmation stating my intention that this is going to be a good day. I make it a priority to eat well (but not obsessively), take pictures, engage people in conversation and relish in the little victories; a good cup of coffee, a laugh out loud moment, an inspired sunset, etc.
In an active way I engage myself physically whether it’s through yoga, hiking, walking or cycling around town. Getting outside and breathing and moving is a big key for me, but I feel some form of daily exercise, while good for anyone, is crucial for those of us living with Parkinson’s.
5. How do you think sports and teamwork helped prepare you for dealing with Parkinson’s?
Great question. The way I relate my athletic background in dealing with Parkinson’s is to give myself goals that are not unlike what I did when I was competing, but instead of focusing on winning bike races my focus is on enhancing my daily quality of life. That’s the goal; to make today better – and in so doing, I setup tomorrow for success and the day after and so on. With PD, it helps tremendously to be self-sensitive, to have self-awareness, to ask the question: ‘how’s this medicine affecting me?’ for example. Athletes are usually instilled with this awareness, so that’s a plus.
As regards teamwork, we are not living with this disease singularly. There are (hopefully) caregivers around us (spouse, family, therapists, doctors), whom you are reliant on. By doing what you can to help yourself, you set a good example for the team and are in a better position to ‘marshal your forces’! Creating a good team is vital to managing this disease.