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Day #1

Eight years ago I had the idea to write a Social Media post every day for the Month of April; which is Parkinson’s Awareness Month. It became a book (thanks Edward Huerta) Recently I was reading said book and decided to make another one with the same format of thirty posts, one for each day of the month…

There’s been tremendous changes not only in the life of yours truly, but life for each of us is vastly different from eight short years ago!

It’s my sincere hope that you enjoy this adventure we’re about to take together and that by reading these daily posts you can come away with a little more information about Parkinson’s. Even though it’s being written from my perspective, it’s truly the story of you…my friends, family and even strangers whose love, compassion and support are the driving force behind what keeps me moving forward!

There’s several things that I mentioned in the first book that I can say for certain make all the difference between living a productive and happy life and wallowing in self pity and I’ll be touching on them in future posts.

The first is exercise! I can’t stress enough how crucial it is to keep moving! I’m now in my twelfth year of dealing with this Beast, and can say for certain that without exercise my progression would be much further than it is at this time!

Exercise is not only beneficial for physical health but it works wonders for your mental health as well.

Personally, I enjoy my morning walk around my neighborhood. There’s always something new to see and encounter and that keeps my mind fresh! I see other people who are walking dogs, pushing strollers or just sitting on their porch and the interaction with them is something that makes me feel better! Twice a week I go to a Physical Therapist, Dr.Physio Therapy and Wellness Center, and they have tailored an exercise plan for me specifically.

Karen has agreed to give me a portion of our home for a small gym for the in between sessions and on the rare occasion that I don’t work out…I feel it!
My takeaway from this story is that you don’t have to run a marathon or do hours every day at the gym to achieve results. Walking to the end of your driveway and back or parking a bit further than you would at the grocery store will make a huge difference in how you feel! Parkinson’s is a disease that moves, for the most part,slowly and robs you of your joy (If you let it) by exercising, even a small amount, you are saying that you are NOT going quietly!

Just remember “A little bit of something is better than a lot of nothing “ See you out there!
DOB

Day #2

I’m frequently asked “what type of exercise should I do for Parkinson’s “ and my answer is…whatever you do that makes you want to continue! Sounds pretty simple doesn’t it?
The bottom line is that based on your age, previous exercise habits and severity of your Parkinson’s, pick an activity or exercise routine that is something that you want to do!
Working closely with a Physical Therapist is a great way to begin, and many are trained to work specifically with PD…
They can assist in finding the right exercises for your needs.
The place I go to has a wide variety of patients that are in various stages. Some are in wheelchairs and require assistance. There’s others that have very few symptoms and everything in between! The common factor is they are all there, working hard and trying to slow the progression of Parkinson’s through exercise.
The first time I went to a session I was evaluated by a Therapist and given an exam to determine my level of fitness.
Next, they asked me what I felt I needed to improve on the most and before the session was over I had a set of exercises that I could use at home and at future sessions.
I’m still doing my daily walks and now incorporate stretching, meditation and yoga with a sprinkling of Tai Chi for good measure. Find something that works for You and remember:
“A body in motion tends to stays in motion and a body at rest tends to stay at rest “
DOB

Day #3

As Parkinson’s Disease progresses many of us develop a slowness of gate and walking. The arms don’t move in a natural way and feet can drag, prompting falls…the #1 cause of injury related to PD.
Posture begins to deteriorate, and we can hunch over, another potential cause of falls. Legs become weak as muscles begin to atrophy… standing up for an extended period of time becomes difficult and the fluid movement of your body becomes a challenge…And you thought Parkinson’s was just shaking 🫨! Here’s a few tips to help you manage the above mentioned issues through exercise! Without medication.
#1. Walking to a Metronome. You can get a free one to put on your phone. Start slowly and find a pace that works for you. As the rhythm of the metronome clicks, think left right left right 1-2-3-4. (Assuming you’re in 4/4 time! As your left foot steps forward,move your right arm forward…same with the right foot and left hand. Take big steps and be aware of where your feet are. Walk heel to toe. As this becomes easier, increase the tempo Eventually, your brain 🧠 will adapt and your gait will improve.
#2. Posture… stand against the wall with your back against it putting your feet as close as possible to the wall. Stand straight and tall with your back and shoulders touching the wall. Breath in through your nose for a count of five and hold your breath for a count of four then breathe out through the mouth for a count of five, all the while being aware of your back, shoulders and butt against the wall.
Another good one is to stand in a doorway with arms at shoulder height. Lean forward, as if you are doing a vertical push up and try to touch the shoulder blades together. This one can be a little tricky so it’s a good idea to have someone there with you.
#3. Leg strength. Sit in a chair with your feet on the floor and your back straight. Cross your arms over your chest in front of you and slowly stand upright, as you come down, be aware of your body posture and return to the seating position. Don’t forget to breathe 🧘‍♂️!
Here’s my disclaimer… Talk to your doctor about ANY exercise you begin to make sure you’re capable of doing it safely. What I’ve presented here is something that I have been doing for years. Start slowly and at the first sign of pain or discomfort… stop 🛑
I hope it helps…
DOB

Day #4

Balance… What comes to mind when you hear this word?
Most people think on a physical level relating to Parkinson’s and that’s understandable, but there’s other forms of balance including mental, emotional and spiritual balance that have nothing related to the physical. Seeing as how this is a book about Parkinson’s, I’ll start with the obvious…
Physical Balance amazes me! The very act of walking upright is an engineering marvel in itself. You have so many different parts of the body and brain working together to create a physical symphony of motion and movement. In a healthy person we don’t think about what it takes to orchestrate this interaction. It’s no wonder that it takes a few years for us to learn how to master the art of movement from birth to toddler to child.
The portion of our brain that controls unconscious movement is generally one of the causality’s of Parkinson’s. Many loose the ability to move fluidly and develop a shuffling gait. Not being able to initiate movement is another thing that can happen and the term for that is freezing.
Practicing Tai Chi is a great way to help with Parkinson’s. The movements are slow and steady with emphasis on breathing posture and balance. Many local communities offer free classes and there are excellent resources available on the internet as well. Rock Steady Boxing is a class that combines not only balance but a very good aerobic workout as to boot!
Tomorrow I’ll delve into the non physical aspects of balance…
DOB

Day #5

Yesterday I touched on the topic of physical balance as it relates to Parkinson’s. Today’s post will be about finding balance in your mind and heart…
It’s been twelve years since my Parkinson’s diagnosis and during that time I’ve experienced pretty much every emotion in the book from complete and utter despair to elation and everything in between! For the most part, my life is filled with positive thoughts and emotions but occasionally the dark side creeps its way in. That’s when finding an emotional, mental and spiritual balance is most important.
Parkinson’s Disease is a progressive illness that has many symptoms that are invisible to the people around you…even those who are closest to you. The same loss of brain function that causes the tremors most associate with Parkinson’s also has an unseen impact on mood. Things that most people take for granted sometimes feel like monumental tasks.
In my own experience I find that some of the activities that I took for granted are ones that I now avoid! As my abilities diminish there’s a sense of sadness, frustration and despair knowing that the very essence of who I am and how I see myself will never be the same as the vibrant guitarist who was ready to take on the world. That’s when the Balance comes into play.
Even though things aren’t the way I envisioned them, I know for sure that the hand life has dealt me is the one that I am destined to play. Because of Parkinson’s, I’ve met and count as friends, some incredible people. Through several of them I am involved with a foundation that helps others…The sense of accomplishment from that endeavor is one of the most rewarding aspects of my life…The volunteer work that my friends and I do playing music for children at the local hospital and young adults is without a doubt the best gig I’ve ever done!
I’ve been fortunate to be able to make a great living doing something most people can only dream about. Playing music in front of thousands of people and having many famous musicians as friends to this day is a gift that I now appreciate more than ever. Parkinson’s attempts to upset my balance but with my family, friends and memories to count on it doesn’t stand a chance…
DOB

Day #6

Yesterday I touched on the topic of physical balance as it relates to Parkinson’s. Today’s post will be about finding balance in your mind and heart…
It’s been twelve years since my Parkinson’s diagnosis and during that time I’ve experienced pretty much every emotion in the book from complete and utter despair to elation and everything in between! For the most part, my life is filled with positive thoughts and emotions but occasionally the dark side creeps its way in. That’s when finding an emotional, mental and spiritual balance is most important.
Parkinson’s Disease is a progressive illness that has many symptoms that are invisible to the people around you…even those who are closest to you. The same loss of brain function that causes the tremors most associate with Parkinson’s also has an unseen impact on mood. Things that most people take for granted sometimes feel like monumental tasks.
In my own experience I find that some of the activities that I took for granted are ones that I now avoid! As my abilities diminish there’s a sense of sadness, frustration and despair knowing that the very essence of who I am and how I see myself will never be the same as the vibrant guitarist who was ready to take on the world. That’s when the Balance comes into play.
Even though things aren’t the way I envisioned them, I know for sure that the hand life has dealt me is the one that I am destined to play. Because of Parkinson’s, I’ve met and count as friends, some incredible people. Through several of them I am involved with a foundation that helps others…The sense of accomplishment from that endeavor is one of the most rewarding aspects of my life…The volunteer work that my friends and I do playing music for children at the local hospital and young adults is without a doubt the best gig I’ve ever done!
I’ve been fortunate to be able to make a great living doing something most people can only dream about. Playing music in front of thousands of people and having many famous musicians as friends to this day is a gift that I now appreciate more than ever. Parkinson’s attempts to upset my balance but with my family, friends and memories to count on it doesn’t stand a chance…
DOB

Day #7

I’m grateful! That may sound a bit strange coming from a man who has a progressive, incurable,degenerative brain disease but I’ll say it again…I’m Grateful!
I’m grateful to have the ability to write these daily posts. I’m grateful for my home.I’m grateful for having a loving Wife and supportive friends. I’m grateful for the people who were the early pioneers of Deep Brain Stimulation Surgery and the skilled Doctors who turned the clock back on my Parkinson’s. I’m grateful for all who have gone before me to advance the science and continue to fight for a cure. I’m grateful for the friends who stepped up and made our foundation a reality.
dobparkinsonscharity.com (shameless plug) I’m grateful for the musicians who come out to give of their time and talents to help us raise funds. I’m grateful for the support of the venues that host our events and last but never least I’m grateful for you for taking time to read this…I love you all!!!
DOB

Day #8

The people around us…
How do you see yourself in your minds eye? Do you think about how your family and friends are being impacted by Parkinson’s? Do you worry that you will become a burden on those you love? Whether or not you admit it we all have these thoughts from time to time and it can be a very sobering experience to think of someone you love being put in the role of caregiver for you
In my experience there’s been people who have vanished from my life… I understand that it’s a very difficult thing to see someone you know as a vibrant, active person…and now…
Don’t misunderstand me, I’m still active and independent and at 70 years of age am in better shape than some 50 year olds
but I get it.
The point of this diatribe is that you should not judge others by their actions towards you. Some people, for whatever reasons, just can’t accept the reality that we all face the same inevitable outcome.
In the meantime, enjoy those who are your true friends and rejoice in times with family!
DOB

Day #9

So much for planning…
Yesterday afternoon I had what I considered a great topic for today’s post. Here’s where things get interesting.
Another of the “ gifts “ Parkinson’s has is related to sleep patterns. Vivid dreams and nightmares are a common thing that many experience along with thrashing around and sometimes even falling out of bed! Well my friends last night was my turn.
The dream part occurred when bizarre dreams began and then escalated to finding myself on the floor… Thankfully I didn’t hit my head but both elbows, hands and tail bone took a good hit. The left elbow has a small laceration. As I’m laying there assessing the damage the song from a Jeff Bridges movie comes into my head. The line, “ Funny how Falling feels like Flying only for a little while “ keeps playing over and over!
I pulled myself up and with as much dignity as I could muster, shuffled out to get coffee and read the paper.
Returning from my daily routine of walking and still taking stock of what hurt, out to the kitchen for my smoothie I went all the while trying to put last night’s debacle in perspective.
I unlocked my studio…went inside and put my smoothie on the desk. Unbeknownst to me there was a small pen exactly where I placed my cup and…you guessed it…the contents of my fruit smoothie were now on the desk…floor…a couple of Amps and a guitar! As I stood there trying to decide whether to laugh or cry, Karen came out inquiring what I was doing on my hands and knees and I burst out laughing 😂
She helped me clean up the sticky mess of blueberries and assorted other fruits and I decided to make my great idea another day.
To put it in perspective, here’s what was left of said smoothie.
The moral of the story is “ Roll with the changes “ sorry REO😎🎶

Day #10

Staying positive…
Staying positive and happy is the best medicine for the brain.
It provides a much needed boost of Serotonin which in turn aids in the production of Dopamine… Some days are easier than others though.
Any chronic illness wears on you at one time or another and Parkinson’s is no exception! There are days when I feel like I can do anything and others that all I want is to barricade myself in my house and not do anything. Here’s a few tips for dealing with the not so good days.
Give yourself a break. It’s all right to not be 100% all the time. Make time for you. Turn off your phone and silence text and email alerts for a while. Sometimes all you need is a little alone time…
Get outside and take a walk! This is a great way to feel better quickly… Try to calm your mind while you are walking and take time to relax and look around at your surroundings as you soak up the sunshine and natural vitamin D, something that most of us with Parkinson’s have a deficiency of.
Find a quiet place and meditate. Just attempt to sit and clear your thoughts for a few moments. You don’t need to get into a trance…just relax. I have a childhood memory of waking to the fields that were once behind my house and climbing up a tree. From my perch, the village below was like a Norman Rockwell painting and if I try I can feel the breeze blowing and the sun on my face.
Don’t fixate on the bad and unpleasant things that you are feeling, and realize that they too will pass.
Acceptance of the moment will lead to better times…
DOB

Day #11

When life gives you lemons…
Parkinson’s Disease can give you bushels of lemons 🍋 it’s up to you what to make with them.
When I was growing up in my hometown life was a little challenging at times, to put it mildly. For a while there was a point in time when my own two feet were my only option for getting from one place to another. Working at a few factory jobs was how I earned my meager existence all the while dreaming of being a full time musician. The kindness of others kept me alive…
Eventually, the dream became a reality and I was able to make a decent living as a guitarist and vocalist locally. The rest as they say is history.
During the early days, I didn’t understand how life worked at all (I’m still trying to figure it out) and often turned to alcohol and drugs in an attempt to “dull my pain” not realizing that the events of the day were shaping who I would eventually become.
Fast forward to today. The music career is over but a new one has begun…Nowadays I advocate for others who are going through the horrible effects of Parkinson’s Disease and I believe the years standing in front of an audience with my guitar led me to that! Most times when I’m giving a talk about my experience with PD, it’s a shoot from the hip…no script presentation…much like jamming with a band! I don’t get nervous or have any kind of stage fright. The reaction of the audience is very similar to what a show would be with people hanging on every word, and after the presentation is over, there’s always those people who want to hear more and speak to me one on one.
It’s a great feeling to be able to bring a bit of hope into the lives of others and I’m honored to be able to… Maybe next time I do a talk we’ll have lemonade! 🍋

Day #12

Clinical Trials
When first diagnosed I asked about stem cell therapy and was told that it held great potential but was 3-5 years away. That was 12 years ago!
In the ensuing years the number of people diagnosed with PD has risen exponentially. There’s amazing advances being made in countries around the world almost daily, but for the ones who have Parkinson’s it seems like we’re at a standstill.
Recently I spoke with a respected Neuroscientist in South Florida about stem cells and got the same answer…great promise but 3-5 years away.
In the first couple of years after diagnosis I participated in a clinical trial for the DaTscan, which is now being used as a definitive test for diagnosis of PD.
The brave men and women who were the pioneers of Deep Brain Stimulation are responsible for patients such as me to lead an active,almost normal life!
It seems as though every day I read about a new pharmaceutical product being developed but we’re still waiting for a cure…
I urge everyone who is able to participate in a clinical trial. You could be the one who finds a cure.

Day #13

Quality of life…
Yesterday afternoon I was doing an editing session with a long time client and when we finished, we went to the garden to enjoy a “ Chamber of Commerce Day “ in Fort Lauderdale.
As we sat under the Bamboo, listening to the birds singing and petting one of my cats 🐈 we talked about many topics. Quality of life came up as she told me about her friend who had all but given up on living…That got me thinking.
Before I had DBS surgery my quality of life was going down fast. The tremors that were my constant companion made it impossible to perform, which in turn caused depression and anxiety. It’s been three and a half years since my surgery and not even a single tremor since then! Also, I have not taken any medication since that time… You would think that my quality of life is fantastic,and on some levels it is. On other levels not so much.
I was fully aware going into the surgery that it wasn’t a cure but a very effective treatment and that I still had Parkinson’s. I had tucked away the knowledge that symptoms could and would return…some day. The nagging feeling of waiting for the other shoe to drop so to speak was beginning to invade my thoughts and my quality of life was suffering due to my thoughts more so than anything physical. That’s not to dismiss the new physical issues I now experience. My walking and balance are getting worse and just last week I found myself on the floor…having fallen out of bed! Five days later and I’m still licking my wounds.
Karen and I have worked hard for our entire life together and can pretty much go anywhere in the world we choose. We have no bills or financial obligations other than the day to day expenses of life. We’re at the point in our lives where we should be deliriously happy and for the most part, we are.
We have each other and that’s all we need…
Maybe quality of life is all in your head. Enjoy your day.
DOB

Day #14

Let it go…
On this morning’s walk the Dave Mason song Let it Go Let it Flow kept playing in my head. As a side note, Dave Mason is in my humble opinion one of the most underrated guitarist out there! His voice and songwriting are second to none…but I digress.
The song is about not letting things get to you and letting life’s issues “Flow like a River” Great advice but not always quite that simple. Chronic illness can wear you down even if you aren’t the one who is experiencing the tangible effects. Family and friends are oftentimes trying to make sense of the way their loved one seems to be morphing into an entirely different person right before their eyes.
For the one who is experiencing the symptoms of Chronic Illness they are trying hard to understand and hang onto the last vestige of who they see themselves as…
One of the main reasons why I continue to write these daily threads is because it provides a measure of release for the pent up emotions that are in my head… I think they may also be of benefit to others who are going through the same issues as yours truly and by sharing with them my thoughts and personal experience with Parkinson’s perhaps they can “Let it Go…Let it Flow”
DOB

Day #15

A new day
One of the more challenging aspects of Parkinson’s is you never know what the day will bring. While this is true for all of us on one level or another, Parkinson’s presents it’s own set of rules to how your day will go! Some mornings you get up and feel like you’re invincible, while other times it’s a struggle to get motivated and the simplest things become a monumental effort. Not only is waking up a surprise every day, but things can change in an instant! Various factors come into play such as stress levels, amount of rest, medication absorption…even a change in the weather can produce a physical change in how you feel from minute to minute.
The most effective way I’ve found to lessen the swing between feeling good or not is by establishing a routine. When I get up in the morning I have a very strict routine that I do…every day with no variation. By sticking to my routine I’m able to start the day on a consistent note…
Aside from the physical issues Parkinson’s brings to the table, there’s also psychological and emotional issues that arise in the course of the day that can be difficult to control… (More on that in future posts)
Making plans, either long or short term, is another challenge with Parkinson’s. You may have the best intentions about going out to meet friends or any number of other activities, but at any given moment you can go from feeling great to feeling terrible! It’s truly amazing to me how many ways this disease has to try to dominate and control you and it’s a constant battle to keep it at bay…
The positive side (you knew this was coming!) is that you’re forced to slow down and to appreciate the good times… You focus on feeling better and try to minimize the bad periods. The establishment of a routine involving exercise, not only for the body but also the mind and spirit is essential, and that good habit produces results that work in fighting not just the physical issues we face, but also the emotional and mental challenges of a chronic disease….Enjoy your day…
DOB

Day #16

Treatment alternatives…
In the Twelve years since Parkinson’s made its appearance in my life there’s been great strides in the treatment options available to those of us who are in the throes of this disease.
Though Carbidopa/Levodopa remains the gold standard in pharmaceutical treatment for many, other drugs are also available. As a side note, Carbidopa/Levodopa was made available in 1967!
There are time release options and some that trick your brain into thinking that it is making more Dopamine, while others deliver Dopamine via a pump infusion. One of the biggest obstacles is something called the Blood Brain Barrier. This membrane is vital to keeping unwanted particles from entering your brain and causing problems. Unfortunately, it also inhibits the absorption of many pharmaceutical drugs to reach the area where it does the most good. I’ve seen research on an interesting technique to deliver medication where an MRI guided Ultrasound will open up a portion of the Blood Brain Barrier long enough to deliver the drug where needed, then close it!
Other studies are also being conducted on the Vagus Nerve, the largest nerve in your body that goes from the gut directly to the brain.
The benefits of physical activity and exercise are being studied as a way of reducing the amount of drugs that are needed.
DBS Surgery is an excellent choice for many people who are experiencing Tremors as a main symptom. Electrolytes are placed in the brain at strategic locations with thin wires that connect to a stimulator in the chest. I opted for this choice three and a half years ago and it was the best choice I ever made! (Aside from marrying my Wife) The technology is evolving at an unprecedented pace in history and I am optimistic that a cure will be found…in my lifetime 😎
DOB

Day #17

Where did the time go…
My thirty days of posting for Parkinson’s Awareness Month is more than half finished. It seems like I just started!
Time is a very valuable commodity indeed and as Gerry The Cat and I were doing our morning walk it dawned on me just how fast the years can go by.
The home we live in has been ours since 1990. We purchased it for less than many new cars cost today! I left the Upstate New York area in 1982 began an adventure that continues to this day.
During those years I’ve made many friends and lost some… Triumphs and tragedies have come and gone…relationships ended and children and grandchildren were born.
The only thing that is constant in life is change. It’s inevitable…How we deal with it is what makes us or breaks us.
I’ve resolved to keep the negativity and those who wallow in it at a safe distance. Don’t waste your precious time on those who don’t deserve it. There’s plenty of people out there who are good, caring compassionate citizens of the universe and those are the ones that deserve a piece of the most precious commodity we possess…Time!
DOB

Day #18

Roll with the changes…
Nothing stays the same… Life is a series of peaks and valleys that’s every changing. There’s no predicting what’s coming down the road and if you’re not quick enough, you can get run over!
As a young man I would have never imagined in my wildest dreams that I would be fast approaching my 65th voyage around the Sun! There was a popular saying back in my youth that went “Don’t Trust Anyone Over 30” Our culture was changing from the Leave it to Beaver mentality of the 50’s to something exciting and new! People were becoming more aware and proactive and a change was in the air… That change was evident in all aspects of life, but most notably in Music. It was a magical time to grow up,and I’m grateful that I got to experience those days first hand.
It wasn’t all flower power and peace and love though…I remember having “long” hair and being ostracized by some people who were just to closed minded to be tolerant of others…The Civil Rights Movement was in full swing, and the brutality that was on the nightly news was shocking. The war in Vietnam was going full steam and young men were dying…
Through all the triumphs and turmoils of that era, we managed to survive! The nuclear war didn’t happen (remembered those drills in school where you’d get under your desk?) we went to the Moon and Woodstock happened!
You may be wondering what this has to do with Parkinson’s Awareness Month… Well, here goes…
With Parkinson’s, as with life, it’s all about being able to adapt to changes. Sometimes those changes are good and you benefit from them…other times not so much. Being flexible to those changes is crucial. As this disease progresses it can bring new challenges and hurdles that you may not be ready for Just like life, you can adapt or fall by the wayside.
This is an exciting time to have Parkinson’s! Just like in the days of my youth, changes are in the air. New technologies are emerging on an almost daily basis, and a better understanding of the root cause of this monster is bringing with it the advent of new treatments and the possibility of a cure…
I understand only to well what this hideous disease feels like and the havoc it wreaks not only physically but emotionally, but just as in life…you either adapt or you get left by the side of the road. I encourage anyone reading this who’s dealing with Parkinson’s to become a Warrior! Learn all you can about your disease…Reach out to others if you need help…Volunteer for a study…Live your life! As difficult as it is from time to time, stay positive and learn to roll with the changes…

Day #19

Awareness…

Whenever I meet someone with Parkinson’s it’s amazing to hear the lack of knowledge they possess about the disease that will be with them forever, or until a cure is found.

This morning I was honored to be on a panel consisting of people with PD and care partners hosted by The American

Parkinson’s Disease Association. As I was sitting at the table,surveying those in attendance I could see the hope and fear of the unknown in their faces. I’ve done similar events before but this one was different…

I talked about the importance of exercise and staying social,two topics that I stress when doing these talks but this time I emphasized the importance of doing research on your constant companion. It was as if a light bulb was switched on.

Getting educated about Parkinson’s, or any chronic illness provides you with a valuable tool. The fear of the unknown is certainly a powerful emotion and knowing about what is happening with your body is quite empowering! Remember…Knowledge is Power.

DOB

Day #20

Awareness…
Whenever I meet someone with Parkinson’s it’s amazing to hear the lack of knowledge they possess about the disease that will be with them forever, or until a cure is found.
This morning I was honored to be on a panel consisting of people with PD and care partners hosted by The American
Parkinson’s Disease Association. As I was sitting at the table,surveying those in attendance I could see the hope and fear of the unknown in their faces. I’ve done similar events before but this one was different…
I talked about the importance of exercise and staying social,two topics that I stress when doing these talks but this time I emphasized the importance of doing research on your constant companion. It was as if a light bulb was switched on.
Getting educated about Parkinson’s, or any chronic illness provides you with a valuable tool. The fear of the unknown is certainly a powerful emotion and knowing about what is happening with your body is quite empowering! Remember…Knowledge is Power.
DOB

Day #21

Using your gift…

I believe that you’re born with a talent…Some are born with several. Having talent doesn’t necessarily mean that you’re successful. That requires practice and dedication and a willingness to work hard for your goals!
When my musical career began to suffer due to the ravages of Parkinson’s a new talent began to emerge in the form of writing ✍️. I found that the act of writing down my thoughts was a way to keep my brain functioning and not long after the idea of sharing those thoughts became my first Booklet. What your reading now will eventually become Booklet # 3.
Having been on stage in my previous career the natural evolution was to “Take it on the road “ and thus began my speaking career! So far it’s still in its infancy as I’ve given only a dozen or so such talks, but the feeling that I get from standing (sitting) in front of a roomful of strangers and the look on their faces is as rewarding as any concert I’ve ever played!
Yesterday morning I was part of a panel discussion for the APDA and the people in attendance along with the event coordinators were most receptive and gracious to me. For several hours after I was home, I felt fantastic! The feeling was quite similar to what it feels like to be on stage with a great band. On a technical note the release of Dopamine and Serotonin that I felt was tangible…with no side effects!
See you on the Motivational Speaker Circuit 😎🎶
DOB

Day #22

Sharing

Parkinson’s Awareness Month is rapidly winning down…For those of us who live with it, awareness isn’t limited to a calendar date but is a daily fact of life. My mission for the Month of April is to raise awareness and hopefully impart some useful information to those who have this disease. Through the sharing of information it’s my hope that more research will occur and a cure will be found.
I belong to several on line Parkinson’s groups and subscribe to various medical sites that are working on new treatments and a potential cure. I’m quite active in the local Parkinson’s community. Several months ago (it feels like a lifetime!) I was involved in a panel discussion in Miami with a roomful of pharmaceutical researchers. They wanted to get a first hand view of what it’s like to live with Parkinson’s and what I was doing to control my symptoms. We covered not only the Doctor prescribed medications, but also delved into the non traditional treatments that I use. We talked about social interaction…medical marijuana…exercise…nutrition and alternative treatments including supplements and treatments that have been in use by other civilizations. It was a great day and I came away from it feeling better about the future of Parkinson’s treatments.
Soon after that, a facility in Boca contacted me about doing a fund raiser for a new wellness center they were planning on opening to serve the Parkinson’s community. At our initial meeting I agreed to not only do the fundraiser but volunteered to give talks at the center about ways to make living with Parkinson’s more manageable. We also discussed my giving guitar instruction to Parkinson’s patients as a way to help with symptoms.
Around the same time I had a call from a producer who had gotten wind of my story and wanted to know if I’d be interested in doing a documentary about my Parkinson’s journey. They had a film crew scheduled to come and shoot my band performing at The Fort Lauderdale Irish Festival, with a series of additional one on one interviews scheduled after that. These events are still going to happen…it’s just a matter of when.
I feel that by sharing my story it makes Parkinson’s more personal. People that wouldn’t have a clue about it now have someone they know first hand who not only lives it every day, but gives insight into ways to have a happy and productive life…If someone had told me twelve years ago that I’d become a Parkinson’s advocate I would have thought they were crazy! This path that I now find myself on is a far cry from my old life, but I accept and embrace it wholeheartedly. I’ll keep sharing new information on the treatment of Parkinson’s and telling my story…as long as there’s someone out there who can benefit from my sharing…
DOB

Day #23

Care Partners…
In my opinion far too little is said about the ones that are with us as we navigate the world of Parkinson’s, or for that matter any chronic illness. The emphasis is on the one that has the disease but never downplay the role our loved ones play and the physical, emotional and mental toll our illness takes on them. The most bothersome aspect of my own illness is seeing how it affects my Wife.
I attempt to put on a brave face so as not to make her worry, but after 42 years together it’s not easy to fool her! She makes a valiant attempt to not show her true feelings but from time to time I’ll catch a glimpse of her as I shuffle around the house and the concern and sadness in her eyes…
I was always the strong one… ready for anything and even though I try to maintain that dynamic sometimes it’s hard.
As my physical limitations increase the daily chores that were once a part of my routine became difficult and I see her picking up the slack for me. That saddens me… Now that we’re in the position to travel to the places we always talked about seeing, the prospect of making it a reality is daunting to say the least! I’m grateful that we did the things we did when we were both able to… Traveling the entire Country on a Motorcycle for a year…Spending time in a Rainforest and hiking glaciers in Alaska are all etched in my mind along with many other adventures we’ve shared…
Now we’re sharing an adventure that neither of us ever imagined, but I can’t think of anyone else that would be as patient and supportive to face it with then my Care Partner…
My Wife… My Love…
DOB

Day #24

Small word…Big impact
As I was taking my morning walk and thinking about a topic for today a single word came to mind. It’s a small, four letter word that, the more I thought about it I saw what a profound impact it has on us…The word is Can’t. Think about your own life for a moment and all the times you said to yourself “I can’t do that or that can’t work.” When we use that word we’re actually setting ourselves up for failure. I can recall many, many times talking myself out of trying something because I felt I couldn’t do it.
Growing up in Upstate NY during the Summer I went to a local camp. One of our weekly outings was to Prospect Park Swimming Pool. They had a learn to swim program there and for graduation you had to swim across the deep end of the pool. I can recall the sense of terror I had when it was my turn in line, even though I’d done it many times before… The nagging thought that I can’t do this was paralyzing me with fear. Eventually, I dove in and made my way to the other side splashing and sputtering. I thought I couldn’t do it and almost gave up but in the end succeed.
When we’re first born, can’t doesn’t exist yet. We’re open to any possibilities. The act of learning to walk is a good case in point. The very nature of physics is working against us when we stand and walk upright. If the concept of can’t existed in our brains as babies we’d never take that first step! As we age, we put limitations on ourselves and justify them by saying we can’t do something. When I was a younger man I did many things that I now say I can’t do. Of course, as we age there are certain restrictions that our bodies impose on us, but how much of that is physical and how much is giving in to that little word?
Parkinson’s gives you a whole new set of circumstances where saying “I can’t” is often the response. Everything from social engagements to exercise to eating healthy can be dismissed by using the words I can’t… It can become a very destructive habit that’s self perpetuating and can hasten disease progression…if you let it.
Here’s an experiment to try. See if you can go a full 24 hours without once using the word can’t. If you do, keep track of how many times you say it and under what circumstances. Think of other phrases that may convey the same emotions such as “I don’t feel like it” or “I’d rather not” instead of I can’t… That tiny little word hits hard in our psyche and eliminating it is a big step in having a happy and fulfilling life… You CAN do it!
DOB

Day #25

Petting my Cat
What could petting my cat possibly have to do with Parkinson’s you may ask? As it turns out…quite a lot. Every morning part of my ritual is to sit on my front patio, smoothie in hand and write something. Invariably, every time I get settled and ready to go, Gerry The Cat hops on my lap and insists I brush him and lavish praise on him. He’s very persistent and won’t take no for an answer! Eventually, he’s had enough and heads out to the garden to torture a lizard or two before finding a comfy spot for a nap. Some days I’m anxious to get right to the business of putting my thoughts down but that doesn’t concern him in the least! I really started to think about it this morning and here’s what I came up with…
It doesn’t matter what I had planned for that moment because he is going to have his way… He wants his lap time, and nothing is going to change that. Gerry The Cat’s time with me is a metaphor about life itself.
Most of us have a plan about our lives and the direction we’re heading. We think we’re in charge of our own destiny and live accordingly. That plan can hum along smoothly as time passes. Out of nowhere, something pops up that changes it. An illness, changes in finances or the death of a loved one can shake your life plan to its core.
The appearance of Parkinson’s twelve years ago was one of those moments for me. There were all sorts of opportunities being discussed about my career and the future was bright. Karen was doing great and we both enjoyed good health. There was plenty of money in our retirement accounts and we were making plans to do some traveling. All in all, the plan was coming to fruition…
Parkinson’s changed that.
It took us a while, but eventually when the initial shock wore off, we started on plan B. My career goals were reassessed and priorities shifted. About that same time, the idea of volunteering came to the forefront and things changed again. I discovered how rewarding it is to be of service to others and that started a plan C that continues today. What I’ve learned from this experience is that no matter what your plans might be, a Gerry The Cat is waiting to hop on your lap… You can either shoo him away or you can embrace the moment and pet him…The choice is yours…

Day #26

Can you see the real me…
There’s no denying things change when you have a chronic disease… Modifications to your lifestyle and routine are inevitable as your condition advances, and you learn to roll with the punches and adapt to your new normal. I sometimes catch a glimpse of myself in the mirror and wonder “who’s that old guy looking at me?”
Despite having Parkinson’s Disease, I still feel young…at least mentally! This leads me to my topic for today… How do you see yourself, and how do others see you?
Many of my friends are lifelong…going back to the days of growing up in a small Village in Upstate NY. Back then, we played ball, rode our bikes and spent countless hours exploring the woods and creeks that were everywhere in that rural setting. Later, as music came into my life, another world opened up, and more lasting friendships were formed…
Relationships came and went, and I was blessed with two Sons…
I set out from that small town and embarked on a career in music that continues to this day. Through luck and good fortune, I’ve been able to earn a living doing something that I love for most of my adult life… I realize how rare it is to be able to make your passion a vocation and am mindful of that gift every day.
There’s an entire set of friends that have come into my life since Parkinson’s who have never known me without my constant companion. They didn’t see the young man in his prime jumping around on stage in front of thousands of people, playing venues across the country…What they see now is a much slower version, in local clubs, still doing what he loves despite the limitations of this disease…
Truth is, both of those images have merged into one… The spirit and love of life is intertwined with the realities of a debilitating physical illness… There are times when that old man in the mirror is replaced with the image of a young man, ready…willing and able to take on the world! At other times, the reflection is that of a man showing the ravages of his disease…
I sometimes detect a fear in the eyes of my friends that I’m just now beginning to understand. The same reaction you would have at the sight of an automobile accident…Part of you wants to look away and have nothing to do with it, while another part is drawn to it with a morbid fascination. I, myself feel the same way at times…
The primary reason why I’ve chosen to do this month long series of posts is to raise awareness of Parkinson’s… A very large part of that involves realizing that a person with Parkinson’s, or any illness, is still the same person! The disease does not define them! They had a life before their illness, and will continue to have one! Look beyond the physical and emotional aspects and see the person inside…
The two merged together… Just trying to get along on their journey…

Day #27

I see my old comrades, all bent stiff and sore…
The above is a line from one of the songs the great Michael Meehan sings in our Irish Band… It popped into my head on the morning walk, so here goes…
Today, I want to focus on all those who have gone before me on the Parkinson’s journey…The logical first one would have to be Dr. James Parkinson. In 1817 he wrote a paper entitled
“An Essay on the Shaking Palsy”. The disease goes back to the ancients, with reference being made to “Kampala” an Indian word that means tremor in Sanskrit. Ancient Chinese medicine describes it, as well as documentation from Western medicine as early as AD 175! Dr. Parkinson was the one responsible for the name we all know now, but as you can see…it’s been around as long as mankind itself…
Others with names long forgotten refined his theories, and continued on, finding other symptoms related to this shaking palsy. It wasn’t until 60 years later that his work was universally accepted, and a French Neurologist, Jean Martin Charcot officially named the condition as Parkinson’s Disease.
It was in the 1960’s that researchers discovered a lack of chemicals in the brain, specifically in the area known as the substantia nigra that was the cause of the disease. Why this area deteriorates is still unknown, but a substitute for the missing chemical was discovered soon after, and Levodopa was first administered as a way to combat the symptoms… It was first used in 1961 when it was administered via an IV injection. Eventually, an oral form was created, and continues to be the Gold standard for treatment to this day… Various other forms of treatments have developed, and the search continues for a cure to this disease…
Along the way, thousands of nameless individuals have volunteered to put their own well being aside, and participate in trials that are aimed at eradicating this disease. Through their selfless acts, new treatments such as Deep Brain Stimulation have emerged, giving hope and a better quality of life to many… Research continues, and the need for participants in clinical trials is the driving force in finding a cure.
Individuals such as Michael J Fox and Muhammad Ali have put a face on the disease, and millions of dollars have been raised for research due to their efforts. I’m grateful to them for having the courage to come forward with their diagnosis and lend their names to the fight!
Many of us have had loved ones with this horrible disease, and have seen the ravages of it first hand…Watching as the one you love slowly succumbs to It’s relentless progression, feeling powerless to help…
Those of us in the grip of it live a life of uncertainty…not knowing when it may decide to rear it’s ugly head and move on to the next stage… Wondering how long will I have… We anxiously look forward to the next breakthrough, and hold out hope that a cure will be found in our lifetimes…
I’m eternally grateful to all who have come before me and helped to develop the treatments that make our lives a bit more manageable… To my friends who have succumbed to this disease, you’re always with me…in my heart and mind, and when the day comes that a cure is found, I’ll raise a glass to you…
DOB

Day #28

Back to the Future…
When I’m speaking to people who’ve been recently diagnosed with Parkinson’s, the most frequently asked question I get is “What can I expect?” When I received my diagnosis in August of 2012 that’s exactly what I asked…I’m still waiting for the answer!
Parkinson’s Disease is for the most part a slow moving illness (pun intended). By the time a diagnosis is made, you’ve had it for years… Different symptoms appear as the damage to brain cells continue, but it affects everyone differently.
Some progress rapidly while others stay in the early stages for years…It’s the luck of the draw.
When you get the news that you have an incurable, progressive brain disease the natural reaction is to want answers as to what to expect for the future. Unfortunately, that’s not something anyone can answer…
Parkinson’s generally shows as a tremor on one side of the body, usually in a hand. Current medications can do a decent job of keeping things under control for a while. As it progresses it can move to other limbs such as a foot or leg. This can lead to walking issues, which in turn can lead to balance problems sometimes resulting in falls. A laundry list of other issues can show themselves at various times including sleep problems, difficulties speaking, pain and stiffness, facial masking, emotional problems and cognitive decline. In the course of the last twelve years here’s what I’ve learned about what to expect from this unwanted visitor…
It’s not going to go away… I was convinced all I had was a pinched nerve from a fall…Wrong! Even up to today, I’m still waiting for someone to yell surprise! We were only kidding!
I know that this monster has forever altered the course of my professional life. Tremors, unsteady gait and balance issues make it impossible to do my job, although I’m not ready to have a garage sale of guitars quite yet!
It’s had an impact on my Wife. This is by far the worst… She sees the man she loves shuffling around with his shaking hand…She sees the impact not just financially but emotionally on me with my diminished ability to do do the thing that I love…almost as much as I love her.
These things won’t get better as time marches on and I understand and accept that…to a degree!
Dwelling on and obsessing over the bad things that happen to us is exactly what Parkinson’s wants you to do! As I’ve said before, it’s a living, breathing creature that feeds on fear! Letting it control your life is exactly what it wants! I’ve immersed myself in anything related to Parkinson’s in an effort to better understand what I’m dealing with. There’s a saying that goes “Knowledge is Power ” and I believe that one hundred percent!
The best advice I can give to someone with Parkinson’s, or any health issue is to learn to be in the moment! Thinking about who you were before and what you may become is a waste of precious time and energy. The past is just that, the past. Embrace the fond memories but don’t obsess about the glory days.
You can’t predict the future… Worrying about what may happen takes you away from where you are right now! None of us have any control over what the future will bring and the only thing for certain is that no one gets a pass..
Life is a beautiful gift and it’s meant to be enjoyed and savored like a fine wine. Don’t ever let anyone or anything take that gift away from you…
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