With the absence of a cure and the limited ability of our medical system to provide the help we need, countless entrepreneurs have sprung into action to fill the social web with cures-R-us, whether they have any legitimacy or substance to do so.
To fight Parkinson’s effectively you must know it. But, in order to know it, you must have it.
Before you press SEND on your email expressing outrage over my unambiguous statement, allow me to explain my position. I am not trying to negate the work that today’s primary care doctors, physical therapists, or movement disorder specialists are providing – not at all. My goal is to shed the light on a new epidemic of dubious healers that populate the internet with their dubious wares.
To find real help, a newly diagnosed person must navigate through the three-ring-circus of the eager-to-help entrepreneurs, some of whom are downright incompetent and even dangerous. I know. I met them, took their classes and listened to their propaganda. It is my duty to report what I’ve learned in these last 12 years and hopefully point you in the right direction to better help.
Type the words “Parkinson’s Disease” on your computer and you will be delighted to learn that there are millions of pages devoted to that topic. To that we add legitimate foundations, research centers, dedicated associations, treatment clinics and labs. If you knew next to nothing on the day you were diagnosed, by the end of that same day, provided you have access to a computer, you can be fairly up-to-date on the PD topic. But, here is your first obstacle, who should you trust? There is a lot of stuff on the word wide web that will make your skin crawl, scare you, or riddle your PC with the types of viruses that make the Black Plague seem tolerable. Alongside the myriad of legitimate help and care, you may fall prey to the charlatans eager to exploit your condition. And, they are so good at marketing “their” catchy slogans and promises that an inexperienced person who is looking for help can be easily misled and unfortunately victimized. Shortly after I was diagnosed, back in 2007, I was contacted by a representative whom I’ve never met, from a PD clinic in Germany. Said representative was 100% certain that I do not have PD and I should be treated for Lyme disease to the tune of $40,000.00, with 100% guaranty of success. We are not taking about some Caribbean Voodoo shamans, we are talking modern and progressive Germany. When I recall those early months of uncertainty, I feel fortunate not to have become a sucker for those criminal enterprises that use words like: Stem Cells Transplants (without sufficient research and evidence to back up their treatments), Lymphatic Drainage, Inner-Core laser therapies, Hyperbaric Ventilation, and so on. As of March 2018, besides doctor-prescribed medications or Deep Brain Stimulation surgery, essentially everything else is part of ongoing research at its best, or fraud at its worst. If you need to know the latest news and REAL scientific developments, go to: michaeljfox.org or if you feel equipped to evaluate the merits of research, you can find millions of papers at pubmed.gov.
After twelve years of searching for ways to live better with Parkinson’s, it is my duty to point out the inconsistencies and lack of useful knowledge that permeates PD’s eco-system. PD is so much more than a gradual loss of mobility and cognitive function. Every person that I work with presents his or her unique set of challenges and symptom variants that must be observed and evaluated on individual basis.
Let’s focus on the gait issues, as one of the symptoms of PD. Most movement disorder specialist I’ve encountered focus on the obvious weakness of the nerve signal due to depleted supply of dopamine. Their solution is to supply you with Dopamine and a suggestion of adding some exercises to your daily routine. But, the questions you may have… who, what, where, when, and why are usually not addressed. I know, because I went to neurologists and movement disorder specialist for years and I was NEVER told what to do. I had to find a physical therapist who would specialize in PD and hope that they would be up to date on the types of physical activities required to help me walk without limping. I hate to report, but I did not receive the necessary help from any of a number of Physical Therapists I went to. They treated me by the book, but their book wasn’t written specifically for people with Parkinson’s.
And so began my search for what would help me deal with PD symptoms. Fortunately, I had spent close to forty years as an athlete, professional ballet dancer and dance educator and I quickly realized that my personal experience was a fantastic starting point. In 2010, I began to develop Parkinson’s on the Move, to share the knowledge and experience that I have gained not only from my fight against PD, but also from my extensive background in physical movement.
Living with Parkinson’s and finding the right way to combat the inevitable onslaught of worsening symptoms is the kind of education you can’t buy (trust us, even a $200,000+ Harvard Medical School education will not buy it). It is in the details of living with it every day, of understanding your triggers, of focusing on your physical condition that makes the difference. It’s not enough to do a few squats, punch a heavy bag, take a dance class or eat fava beans in obscene quantities. The sum of many different, daily activities determines the success of any personal quest to fight PD. You must be physically active, eat right, monitor and manage your stress.
Most people with PD fall into 3 categories:
1) Not disciplined enough to change their lifestyle, or operating under the premise that they are already doing enough.
2) Simply don’t know how or where to start.
3) Too far advanced in their PD progression to believe that anything might help.
What I discovered in these last twelve years is that PD can be managed successfully, but only on an individualized and personal level. It is not enough to send a PD patient to take a boxing class and hope that it offers some lasting help. Truly successful treatment of PD is not available from a dance, boxing, swimming, spinning, or aerobics class. Don’t get me wrong, a person with PD should take as many classes as they can and love them. But, we must keep in mind, most of the classes for PD offer a temporary, feel-good solution. Group classes are great as a place for a vital social interaction, but they are designed for a group and do not truly address individual struggles or provide the level of personalized attention and help that is necessary. And, most instructors do not have PD, or even a sufficient understanding of neurology and physical movement, to truly understand your disease. At best, they can offer an educated guess. Having “some” knowledge about PD gives you an idea of what’s going on, but having PD gives you the type of insight that can’t be obtained any other way.
These days, the web is abuzz with catchy words, such as neuroplasticity — the ability of the brain to change throughout an individual's life. How does that help a person with PD? Is being able to move normally doing a previously acquired skill neuroplasticity? How do we enhance neuroplasticity, and utilize pathways that circumvent the challenges Parkinson’s poses? These questions are often misunderstood, or simply ignored. To effectively generate the creation of fresh neural-pathways that bypass the affected areas of the brain, you must analyze the weakened movement and create a variation that can be performed correctly and repeatedly to allow the formation of a strong signal that is unaffected by PD. This signal may be existent already, but strengthening it, making it into a habit, is key. It is almost like learning or inventing a new language. Shuffling gait, freezing, Dystonia, Dyskinesia and many other issues become manageable, only because the movement has been altered, sometimes very slightly. The puzzling question is, what is that new movement, or a variation of movements? It’s impossible to answer that question broadly because in order to understand what particular new movement may be helpful requires observation and experience to key in on the subtleties of each individual case.
Same goes for nutrition. Telling someone to eat right is a good advice, but for a person with PD you better come up with more than just EAT RIGHT. The basic rules of good nutrition are not enough for a person with PD. You have to know the dangers of food/drugs interactions and what specific food items may help or even slow down PD’s progression. Most PD symptoms can be helped by proper nutrition, and some foods seem to trigger worse symptoms. It took years to figure out what works, but we did it. Again, the right advice can only be based on thorough observation and evaluation of each individual person. Dietary modifications will only work if a person with PD has the discipline to accept the necessary changes and is determined enough to allow for the new nutritional guidance to do its work.
Finally, here are some key items that many cyber “experts” seem to ignore.
STRENGTH and COORDINATION.
In order to address gait issues, stiffness and freezing of some body parts (particularly feet and shoulders), we must first determine which aspects of those symptoms are indeed caused by PD. Sometimes, inaction and absence of a clear personal treatment program are worse than the true physical manifestations of PD. We consider how deteriorating mobility, apathy, despair, loss of motivation and absence of a clear vision on how to deal with the multitude of complex issues may be playing a role in your physical condition.
A simple way of thinking about PD is the following:
- Because of PD, some will experience worsening balance.
- With loss of balance, some will experience loss of confidence.
- With loss of confidence, some will be afraid to move or exercise.
- With absence of exercises, some will develop muscle weakness and weakened neural signals.
- Without sufficient mobility and coordinated exercises, you will be unhappy and may develop psychological problems.
Parkinson’s can be viewed as an avalanche of downward spiraling symptoms, and indeed it is. Remove any item from the MUST DO list and the PD will surely and methodically overwhelm you. We see STRENGTH training as a vital component of any successful regiment when fighting PD. Without sufficient strength, all the feel-good classes will be too challenging and minimally effective.
Another seldom used word when it comes to fighting PD’s symptoms is COORDINATION. Most PD experts see the loss of coordination as an inevitable part of living with PD. That is a simplistic view on this complex disease. There is no degradation of coordination due to PD, but rather a gradual slowing down of the speed with which certain moments are being performed. Throughout our lives with PD, coordination in fact is not affected, but rather the speed of the nerve signal(s) to perform any and all movements has been compromised. Restoring the signal will restore the coordination, but the way of restoring the nerve signal or signals is the area often overlooked, or even ignored by most PD healers because they simply can’t get under the skin of a person with PD in order to find out what are the causes of the multitude of symptoms.
To get our coordination back (or to acquire coordination that we perhaps never had), we must first determine what portion of the movement(s) has been compromised. Then, we must find the way to alter one or some of the movement in order for the new and unimpeded signal to become the dominant nerve signal to offer unaffected movement. Sounds complicated? It is for most people. That is why coordination is not sufficiently addressed. Finding the right movement may be a small step for a man, but it offers a giant clue for mankind, especially anyone with PD and anyone who is trying to crack PD’s complexities.
Fortunately, we do this kind of work everyday. We help people by focusing on the subtleties of their symptoms and we offer solutions based on personal experience and knowledge accumulated over the last twelve years of living with PD 24/7. We do not simply guess how to help anyone to feel better. We work to demystify the most important truths about PD, so that you too can reclaim lost or compromised abilities.
So, while people will continue to scour the internet for answers, we hope that they use their best judgment and basic intuition. If something seems too good to be true, seek more information, do some rudimentary detective work and weed out the charlatans and crooks. There are places that offer effective tools for PD management, but not as many as you may think.
Alexander Tressor & Alexis Peterson
Founders of PDontheMove.com
