As much as Parkinson’s disease tests my day, it does not define my existence. My illness is a part of me, much like my hair color and my bushy eyebrows. It is always with me, but I do not embrace it– nor do I curse it—it just is.
The luxury of time and slow mild progression, if any, has allowed me to use Parkinson’s as a platform. For over ten years, the three-hundred plus blog posts in my archive of blog posts on www.asoftvoice.com continues to be a resource for information seekers.
What was once a straight-forward blog devoted to Parkinson’s disease encouragement suddenly evolved into a somewhat popular published book in 2012, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease, became a reality. For a self-published non-fiction book by a first-time author, the book was surprisingly well-received and graciously promoted by members of the Parkinson’s community. In 2016, our workbook, Dealing and Healing with Parkinson’s Disease and Other Health Conditions was released for anyone looking to make changes in their life (with or without Parkinson’s disease).
I would be remiss, incomplete, and a narcissist, if I failed to bring attention to the woman behind me and the driving inspiration that keeps me in some semblance of alignment. My wife, life-partner, carepartner, best friend, soul mate, and confidante, Angela made both books a priority and brought them to life. Her fortitude, dedication, and patience throughout the book editing process as well as our twenty-two years of marriage is a tribute to her angelic nature and ebullient spirit. She is the gift of a life-time! Michael J. Fox claims to be a lucky man, but I am far luckier.
The encouragement, love, and reassurance from the Parkinson’s community is a vital incentive and pillar to my strength and motivation to the continuation of my blog posts, lectures, future books, and upcoming surprises to come in the coming weeks, and the new year.
Many thanks to my loyal readers, the newly joined and those who have followed me for all these years! I appreciate you reading and sharing my words.
This was created in May 2014, but I thought it was worthy of another appearance.
Here are some Tips for Staying Positive and Proactive:
Take care of yourself. The more you know about Parkinson’s, the better. You play the key role in your own health. Seek out therapies/modalities that work for you. Accepting your illness does not mean giving up.
Appreciate the good in every day. Focus on what you can do! Do not focus on what you can’t do! Savor and appreciate everything.
Stay flexible in all ways. A rigid pole often tends to break in the wind. A flexible pole will bend and give in the wind. Being more flexible will add a new dimension to your life.
A person with a good attitude is much easier to be around and is good for our well-being.
Being positive is a choice! When we label everything “good” or “bad”, we lose sight that we cannot savor one without the other. You cannot have the sweet without the bitter. This is life!
Explore the stressors in your daily life. Find an outlet to help you release your stress.
Procrastination, denial, fear, and apathy only delay the opportunity to begin our own self care. Don’t hesitate to ask for help when you need it.
If you don’t laugh every day, start! Laughter has all kinds of health benefits. Don’t take yourself too seriously. Don’t stop laughing!
Plan ahead for what you can and be aware and engaged. Always have a plan B, C, or more.
The best exercise or activity is the one that you like and you are willing to do. If Parkinson’s prohibits us from doing something we love, then we must find a replacement for that activity.
I hope these are helpful to you.
EverydayHealth.com Recognizes ASoftVoice.com Blog as One of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive!
Recently, EverydayHealth.com recognized ASoftVoice.com, as one of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive.
It is such an honor to be included with so many outstanding websites! Many of the chosen blogs on the list are included on our blog resource list. If you know of a blog related to Parkinson’s that we overlooked, please let us know and we will check it out! Thanks to EverydayHealth.com and to you, our readers! Congratulations to the other bloggers on EverydayHealth’s list and to every blog sharing their important story!
If you are embarrassed, sad, shamed, or lack self confidence about having Parkinson’s, I am here to tell you that you don’t have the energy or time to devote to such unproductive emotions. Stay strong! You have joined a community of amazing, caring, helpful people who are there to support you and encourage you. Spending time on activities that take you away from being your best will only deplete you more. Choosing to be positive and to be your very best can be a reality and not a mushy platitude!
It is up to you to make the first move. Admitting and succumbing to the realization that you need help is not weakness but new found strength. Helping oneself to learn about how others are surviving and thriving benefits all involved. This generous group of people with Parkinson’s and care partners are ready and willing to share their experiences of what has worked and what needs improving. There are tomes of great advice, educational videos, supportive medical experts, and organizations with helpful support groups and exercise programs! Be aware that your improvement and care all begins with your passion, diligence, and commitment to getting better.
I won’t say that being thrust into the world of Parkinson’s is easy and nor is it your first thought to just accept it and move forward. I had some dark days until I realized that my body, mind, and spirit were in jeopardy. My being is my responsibility. There is plenty of help out there, but you are your greatest resource. Now, build your team!
Parkinson’s is an illness that you do not fight, but work with, work around, and find solutions that work for you. In other words, Parkinson’s takes work! I, like you, am on a constant and continuous hunt for wellness or at the very least, some therapy, drug, exercise, or device to improve my condition. I wish you well!
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.