This was my first blog post 10 years ago–slightly updated!
When I was first diagnosed at the age of 23, I have to admit, the diagnosis of Parkinson’s Disease (PD )came as a relief. What I had convinced myself was a terminally malignant brain tumor was a chronic neurological deficiency of the neurotransmitter, Dopamine–that didn’t sound as bad. Sure, PD can be degenerative and rarely do people with PD get better, over time–but I will say I haven’t changed my medication for several years. I am lucky and fortunate that my symptoms show a slow progression.
We expect our loved ones, friends, associates, and colleagues to understand our struggle with this difficult ailment. Parkinson’s challenges us all in different ways. Rarely, if ever, do two PD patients share the exact same symptoms. Those who are healthy and untouched by PD are incapable of understanding what it is that we endure with this mysterious and troubling disease. As much as we would like for those who are close to us to understand what it is that we are going through, it just isn’t possible.
Even if we live or work with someone on a daily basis, there is only so much that we are capable of understanding about what it is that they are going through. The best that we can do for any one is to be present, understanding, compassionate, and supportive. Supportive doesn’t mean that you can’t encourage better living and reminding those who you care about to exercise, eat healthier, and to get proper rest.
I’d like to know about your experience with PD. I plan to address issues facing PD patients like doctors, resources, medicines, cooperative medicine, health ideas, what works and doesn’t , Support Groups, PD Conferences, etc.
I hope you find this interesting and helpful.
I recently joined a Rock Steady Boxing class! The class and the instructor are wonderful! If you have Parkinson’s disease and haven’t tried the Rock Steady Boxing program, I encourage you to find the nearest program in your area. The camaraderie and encouragement amongst the participants is uplifting and inspiring.
The workout is tough, lively, active, loud, motivating, and rewarding. I hate to admit it, but I am getting older. I’m rediscovering muscles that I have not used for a good while. For an hour and a half, the boxers either move through a series of exercise stations made up of quick thinking and moving games, flexibility or core exercises, many of them borrowed from yoga focusing on balance, strength, posture, and mobility. The program is flourishing, as it should. It’s novel, fresh, and effective! This program does something amazing—it makes working out fun again, for me.
Rock Steady Boxing NOVA has been an experience that I did not expect! The whole class has bonded and become a unified group. Everyone supports the other and encourages their fellow boxers. Our coach and leader, Alec, is a charismatic and inspired young man who really strives to make improvements in our class’s lives.
My first two classes, the workouts kicked my butt! I am happy to say that I can see an improvement in my strength, balance, and overall fitness. Rock Steady Boxing is a welcomed break in my day and week. I see the boxing as a moving meditation. It is a break that I look forward to, as well as seeing my boxing friends and putting on the gloves. I think this program builds your confidence as much as your body. Rock Steady Boxing is like a fast-paced support group that makes you sweat.
If you are looking for an opportunity to get a great workout, build some muscle, make some new friends, and pound some punching-bags, then I encourage you to try Rock Steady Boxing in your area to see if it’s right for you!
ParkinsonsDisease.net Reaches 10k Likes!
If you follow this blog, you know that I have been actively posting on the new Health Union site, www.ParkinsonsDisease.net. What you may not know is that this site recently made a rapid climb to 10,000 likes! Here’s where you come in—in honor of this success, you have the opportunity to vote for one of the fine charities below to receive a donation, if they win the vote count. Encourage your family and friends to vote as well. Vote today by clicking this link and scrolling to vote in the poll!
- Parkinson Voice Project
- Davis Phinney Foundation
- Parkinson Association of the Rockies
- Parkinson’s Foundation (National Parkinson Foundation/Parkinson’s Disease Foundation)
- The Michael J. Fox Foundation for Parkinson’s Research
Parkinson Voice Project – Parkinson’s Lecture Series
The Parkinson Voice Project has launched a lecture series which features Parkinson’s experts talking about topics affecting our community. They hold this lecture each month and it’s live streamed for anyone in the world to attend. They also archive previous lectures so you can watch the lectures that are of interest to you. Visit https://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1876 for more information about upcoming lectures and view previous presentations which include lectures on wellness, physical therapy, cognitive challenges, making a Parkinson’s diagnosis, and Deep Brain Stimulation.
Virginia Education Day – October 7th, 2017
If you live in or near Virginia, I hope to see at the Virginia Education Day in Williamsburg on October 7th, 2017. I am a member of the planning committee. The event is being held at Fort Magruder Hotel and Conference Center. The Education Day is has a diverse mix of wellness information including presentations by physicians, people with Parkinson’s, caregivers, and allied health professionals. Click this link to see the conference brochure and click here to register for this event.
Living Well Conference 2017 – Parkinson Foundation, Western Pennsylvania
Join Angela and me in November in Pittsburgh for their Living Well Conference 2017, where we will be presenting and facilitating two breakout sessions. Read this link for all the details. We would love to see you there! We will also be selling and signing our books and audio CD collection at both events—we hope that you can make it!
The following PDF is an excerpt from our new book, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit.
We are excited to provide this collection of exercises and tools that we believe can benefit most anyone! Whether you are an individual, a support group, a social group, or a small informal group, we encourage you to try these exercises and to share it with those who you feel may benefit from it.
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!
Five or More…
My thanks to Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF) for contributing to my question/get to know you experiment.
Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not.
Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?
Italian – See next answer
What do you like on your pizza?
I’m a New Yorker. Plain cheese, bent with the oil dripping onto the plate
Of the four seasons, which is your favorite time of the year?
Spring because baseball season starts. Go Mets!
How many World Parkinson Congress events have you attended?
3 – DC, Scotland, and Montreal
What are you looking forward to most in Portland, site of the WPC 2016?
Unfortunately, I am unable to attend this year but am looking forward to hearing all the reports from the MJFF team. I always love the interactions on the exhibitor floor and hearing what people are really interested in and concerned about.
Tell us something about yourself that we might not know about you that you would like to share.
I’m extremely scared of heights.
Where would you like to go, that you have never been before?
Hawaii – how about they have the next WPC there so I can go?
What is the Michel J. Fox Foundation working on that you would like to tell us?
We are working really hard to develop better diagnostic tests and ways to monitor disease progression through our Parkinson’s Progression Markers Initiative (PPMI) . These measures are critical to allow the field to test new disease-modifying treatments – with the potential to slow the disease. I’m excited that all the data from this study is made available to the research community in real time at http://www.ppmi-info.org.
I am NOT a paid sponsor nor have I been compensated for these comments:
I guess you could call this a “footnote”–okay, bad joke, but I think some of you with foot problems and balance issues, might just find benefit in trying these shoes. They are the cost of a good running shoe and they have a return policy if the shoes don’t work out: My only mention of these shoes here is because I have found them to be so comfortable–period. My wife and I recently discovered these
running shoes made to accommodate for more space for a wider foot. We each got a pair–she loves that her heel doesn’t hurt and I love the comfort and flexibility that it allows my toes. I can say that these are the most comfortable shoes that I own! I just think this product should be known. I haven’t sold out and I won’t sell out. I will only share products that I use, find great benefit, and feel that they may have a positive impact on your life. The shoes came from altrarunning.com.
I want to commend my friend, Sonia Gow on organizing her first Parkinson’s Cafe! Her event was a smashing success as over 50 people in the Fairfax, VA, area attended. The event was like a free-flowing support group and a great opportunity to share and catch up with friends. We are so lucky to have Sonia’s passion and vision for helping the Parkinson’s community so close by. Check out her site at www.parkinsoncafenetwork.org. to learn more.
My friend Jean Burns is bringing awareness to some very important concerns involving clinical trial participant and hospital policies. After you have read this, share it with friends and family. This is an eye-opener. Here is the article in US News World Report.
The 2016 World Parkinson Congress registration deadline for discount is nearing (July 5), so register soon. Don’t forget about visiting the author Book Nook and Wellness Way while you are in Portland, Oregon. This event only happens every 3 years and as an international event in North America, this is a great opportunity to learn from doctors, researchers, practitioners, and patients across the globe. This is a wonderful opportunity to meet and learn from neurological experts from all over the world. Go to WPC2016.org to learn more.
I was going through my files of paperwork and came across years of documents that I considered to be motivational, inspirational, and truly worth being read and reread. You might even remember it.
Although this following post is not specifically Parkinson’s disease related, I find it to be sound and practical advice for everyone. I hope that you enjoy it, find at least 1 of the 10 pieces of advice to be a morsel to take away, and may even share once again with others:
Palo Alto High School Speech by Guy Kawasaki 6/11/95
10. Live off of your parents as long as possible.
9. Pursue joy—not happiness.
8. Challenge the known and embrace the unknown.
7. Learn to speak a foreign language, play a musical instrument, and play no contact sports.
6. Continue to learn.
5. Learn to like yourself or change yourself until you can like yourself.
4. Don’t get married too young.
3. Play to win and win to play.
2. Obey the absolutes.
1. Enjoy your family and friends before they are gone.
If I were to add to this thoughtful list, I might add – Tell the people in your life and those you care about, just how much they mean to you, while you still can!