Category Archives: support groups
Today, of all days is the perfect time to discuss the subject of change. Today, in the United States, millions of voters will have the opportunity to let their voices be heard with a single vote to impact their government. Millions of dollars will have been spent in campaign advertising to insult their opponent, praise or question the current or past administration, or just be terribly annoying, until the next election.
I, for one, cannot wait to see these divisive, bitter, mudslinging, name-calling, unbecoming, childish, messages turn into vapor and return to the barrage of those amusing pharmaceutical ads that we all enjoy at breakfast and dinner time.
If just a small percentage of this political advertising bounty were used to inform the public about the needs of the Parkinson’s world, we could educate the planet on identifying, treating, and caring for patients far earlier in their treatment and improving their care for a disease that has no cure. What could be a more noble use of funds than educating the masses about an illness that is so misunderstood and so poorly explored publicly?
Parkinson’s disease is the second most common neurological disorder in America with an estimated 6 million cases worldwide and approximately 1-1.5 million people in the United States. Even these numbers are suspect for lack of updating and availability to necessary data for making better estimates. For as far as we have come over the 52 years of my life and the 30 years that I have lived with Parkinson’s disease, I see a need for a similar buzz for change, much like the excitement that is in the air on this election day and eve.
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!
When I was first diagnosed, the neurologist in 1991, coldly and in a matter of fact tone informed me that I had “a reptilian stare”! I don’t know if this is an official piece of medical terminology or the vernacular, but I most assuredly must express my thoughts of using such a crude comparison.
Doctors can be outstanding resources for data gathering and possible new treatments, but often fizzle when it comes to bedside manner, hand-holding, support, thinking outside the box, or just sharing compassion. I know that there are some of them out there and I hope that your doctor or doctors are of the compassionate qualification—but if he or she is not, what do you do?
Here lies the $64,000 question (old reference-sorry), of asking what it is that you expect to receive from your physician and how it is delivered?
Is it so difficult to reach your doctor that you can’t get a 24-hour response? Any response?
Navigating the labyrinth-like phone system of most medical providers is a test of resilience and sheer willpower. I think that it might just be an exercise to see just how committed their patients are to the practice. I would compare calling doctors’ offices a close comparison to my childhood game playing of that ever so frustrating, never-ending game of Chutes and Ladders—almost as annoying as pick up sticks. Ahhhhhhhhh, the good old days.
Some doctors’ offices think that they have joined the 21st century by installing these “portals” that are misnamed, closer to a black hole, are often unread on a timely basis, and overly buggy or confusing to maneuver around—other than my issues, they are great!
I don’t have any insight into defying the complexities of the phone systems or portal projections, but you might express your frustrations to your doctor and any staff who will listen. Be sure and share the good stuff with your doctor’s office as well, when this might happen.
This is my first real attempt at an inspirational film. I hope you enjoy it and share it.
I hope that you find this thought-provoking and calming! These are some of my many original photos mixed in with some thoughts. You may have to watch more than once to read everything. Thanks!
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!
For me, the holiday resonates with special memories of the whole family watching parades, football, and eating my late mother’s exceptional cooking. Those memories are treasures that line the walls of my Thanksgiving box for the rest of eternity. Those days are long past, but I am still fortunate to make special new memories with dear friends who mean so much to me. Times change, life moves quickly forward, and I am forced to accept change.
I think a keystone of this holiday is about one thing only, gratitude. In the hustle and bustle of shopping, cooking, pre-Christmas preparation, and Black Friday sales, the meaning of Thanksgiving gets blurred.
This year, I have lost more dear friends, neighbors, and close Parkinson’s disease colleagues than I can count on my fingers. Loss of loved ones, both friends and family are so bittersweet as I rejoice in having been part of their lives, yet mourn that those days have ended.
As the year quickly ends, I am ever so grateful for my wife and best friend, Angela, my wacky and hilarious chocolate lab, Lily, my relatives all across the United States, my dear Reiki and Parkinson’s families, and you the reader/subscriber who takes time out of your busy day to read my latest blog post. I am grateful!
1250 W. Belt Line Road, Richardson, Texas 75080
-Complimentary Valet Parking
-Reception to Follow Performance
or watch the LIVE stream of the concert at the Parkinson Voice Project Facebook page. For more information you can also visit: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1834
It’s so inspirational and moving to witness over 100 unified parkinson voices as one loud harmony! You need to hear it and share the triumph of these singers as they raise their voice in song. I encourage you to listen and experience this magical presentation.
Just so you know, I am a supporter and board member of the Parkinson Voice Project and have been for over ten years.