And as we’re doing last minute finishing touches, our day comes to a halt. In the midst of dotting our i’s and crossing our t’s, our hearts and minds turn to Boston and to all families who are affected by the explosions at the Marathon today. There are Parkinson’s Unity Walk teams and walkers from all over, and we hope that those who are based in Massachusetts are okay.
Please know that we are always conscious of security issues at our event, particlarly this year, and regularly engage a security company to provide services at the Unity Walk, throughout the event and on the Walk route. We have already arranged for increased security coverage at the Walk based on last week’s events in Boston.
I spent Wednesday in New York’s Central Park for a site visit. It was a glorious day to be in the city! The skies were blue, the temperature was warm and the buds are starting to show on the trees. We’ve been waiting for spring for a long time and we think it’s finally here – just in time for the 19th Parkinson’s Unity Walk in two weeks. I walked the 1.4 mile route with our contact from the Parks Department and our security agents, all in preparation for the Walk. If I closed my eyes, I envisioned the Bandshell filled with thousands of members from the Parkinson’s community, wearing their team t-shirts and carrying their signs. We look forward to being together again as a community.
As I was walking towards the subway to take me back to Penn Station and the train the NJ, what did I spot as large as day? It was a bus shelter with an ad about the Unity Walk! Media space like this throughout New York City has been donated by the Wilkins Parkinsons Foundation. We are very grateful for their continued support. Look for these ads on NYC buses, subway platforms and entrances, taxi tops and even in tv ads in NYC taxis. We are taking NY by storm! Help us spread the word. Tweet #puw2013 if you see one of these ads, or post a photo of you next to the ad on Instagram or on our Facebook page. You can also email it to us at email@example.com.
As we all prepare for the Unity Walk and for other walks and races that will raise money and awareness for Parkinson’s disease across the globe, it is important that we keep in mind the simple tips and secrets that can improve the lives of sufferers. One secret that is kept a little bit too tightly by Parkinson’s disease experts, is that the Parkinson medication interval (timing) is as important as the dose. Here are some practical tips that can improve the number of hours of good quality functioning in each day for a Parkinson’s patient:
If the medication is wearing off before the next dose, consider moving dosages closer together.
It is not uncommon for some Parkinson’s disease patients to require medications even as close as every 2-3 hours.
If you experience dyskinesia (extra movements usually an hour or more after a medication dose) you may need to decrease the dose, and move the medication intervals closer together.
Medication timing usually changes as Parkinson’s disease progresses.
Remember in Parkinson’s disease timing is everything!
Sometimes before a big race or athletic event Parkinson’s patients will take an extra dose of medication.
The most humbling experience of my life has been the time I have spent with families, and with patients suffering from Parkinson’s and chronic neurological diseases. I use the word humbling, because time after time, in person, and also on the web forum, we have uncovered simple and addressable issues and secrets that have changed people’s lives. For some sufferers it has meant walking again, for others it has restored their voices, and for many it has resulted in the lifting of a depression, anxiety and desperation cloud that has obscured their dreams, and robbed them of potential unrealized happiness. I never assume a sufferer or family member is aware of the “secrets” that may lead to hope and to a happier life. We must share these secrets, and this is the purpose of this website.
My newest book, Parkinson’s Treatment: 10 Secrets to a Happier Life was published on April 1, 2013 for Parkinson’s Awareness month. We will provide translations of the book and its secrets into over 20 languages, so that we can help people from all worldwide cultures and languages. In each chapter of this new book I will reveal an important secret, and will explain the insight, the rationale, the empiricism, and the science behind it. Additionally, in each chapter I will try to reveal a little more about myself, and a lot more about the patients and talented clinicians who gifted the secrets.
These patients planted the seed of faith. They learned to grow hope, and they discovered the core values necessary to achieve happiness despite chronic disease.
So *FINALLY* our community’s disease awareness month is here. This April, our team invites you to attend the 19th Parkinson’s Unity Walk on Saturday, April 27 in New York City’s Central Park. If you are looking for a place to unite with fellow advocates, teams, families, friends, and caregivers, come join us.
Our Executive Director, Carol Walton, describes our annual event as “… so much more than just a Walk for a cure. It is a time to be with the rest of the community and learn more about how you can improve your quality of life while living with Parkinson’s.”
As a participant, you will have the opportunity to learn more about managing Parkinson’s. Spend time at the booths of major Parkinson’s organizations, Ask the Health Care Experts which will have a Movement Disorders Specialist and members of a multi-disciplinary team, and sponsors’ booths. You will have the chance to participate in activities designed to inspire and encourage our Parkinson’s community. There will be activities for the whole family, including the Kids’ Zone.
The generosity of our sponsors allows the Parkinson’s Unity Walk to donate one hundred percent of donations to research. Since our inception in 1994, more than $12 million in research grants have been awarded. All donations are shared among: American Parkinson Disease Association, National Parkinson Foundation, Parkinson’s Action Network, Parkinson’s Disease Foundation, The Michael J. Fox Foundation for Parkinson’s Research, The Parkinson Alliance, and The Parkinson’s Institute and Clinical Center.
The Parkinson’s Unity Walk will take place at the Naumburg Bandshell on 72nd Street. Registration will open at 8:30 a.m., Kick-Off will begin at 9:45 a.m., and at 10 a.m. thousands of walkers will participate in a 1.4-mile, wheelchair-accessible stroll in Central Park. Additional event information can be found here.
If you want to participate from home, you can take action and fundraise from your hometown! Getting started is as easy as registering online. You can also join and follow the online conversation about #puw2013.