The time is right for me to tell you this story, so I fight off that familiar heavy force of inertia that tries to hold me back. Life’s unexpected changes and details have made their attempts to halt my momentum and send me backward— or maybe downward into a “gradual decline into disorder”— which is not inertia, but entropy, by definition.
Just what is inertia? What is entropy? In my human emotional experience these two are a tag team of forces that set out to unwind your resolve and drain away your power. Cunningly, and with my agreement, this duo took up a permanent residence in a small corner of my life in the Winter of 2009. Then slowly grew, claiming more and more of me.
In January of 2009 I laid down with a terrible three month flu, and got up with a different life. Through months of high fever and a bone-rattling cough I waited for my health to return, as it had always done before. But somewhere in the dark of one of these nights some little pact was made just below my conscious awareness. Somewhere in the dead of night I gave up and let these forces take their course. Once being a person described as “willing to charge hell with a bucket of water,” I was now a helpless and exhausted collection of maladies and mysterious symptoms that I could not seem to overcome.
From this flu came terrible back pain, then a slight tremor, then rigidity, uncontrollable shaking, and loss of strength on my left side. My hair started to fall out, I had gallbladder attacks, I lost my sense of smell and sense of balance, I had very little energy, I couldn’t sleep, I couldn’t stop sleeping, and then there was the depression. After seeking every treatment I could imagine over several years time I found myself face to face with a diagnosis, one that I adamantly denied for one years time, but one that I have now had to accept. The name this wretched overstayer calls itself is a name synonymous with inevitable decline. Its name is Parkinson’s Disease, but I recognize it as “the Nothing.”
The Nothing, according to Michael Ende in his book The NeverEnding Story, is that force which represents human apathy, cynicism, and the denial of dreams. A force that eats away at possibility and destroys hope. In his book, the Nothing destroys Fantasia, the land that represents the endless potential of the human imagination and the capacity to build from our dreams and ideas.
What more is left to imagine when you hear the words “incurable,” “degenerative,” and “neuronal cell death?” How ready are you to dream big when your body no longer obeys the simple commands of basic movement?
I rejected the idea that my symptoms were PD for four years and wrestled this enormous black hole that was such an inviting space to collapse my will into. I was convinced that my symptoms were due to earlier spinal injuries and the resulting misalignment and possible entrapment of nerves. My digestive issues seemed unrelated and I chose to address them with herbal remedies, eventually with great success. My falling hair could be attributed to menopause and I was able to curtail this and reverse it with herbs also.
The rigidity, the shaking, and the weakness were a different story. At first they were intermittent and relieved by chiropractic care and rolfing but over time they got worse, and I got worse. I was always tired, puffy and bloated, with an aching back and injuries from losing my balance and falling, and a horribly painful frozen shoulder. Flat-footed and shuffling, with a frowning mask on my face, I was growing older by the day.
Having PD is like having some alien entity take over your body and direct it against your will to perform movements that are against all logic and practicality. It is a maddening exercise in nearly constant frustration. The very worst of it though is an overwhelming sense of hopelessness. The daily message of this vast Nothing, as you witness your own deterioration, seems to be “just give up.”
I had pretty much given up. Were it not for my persistent son arguing that my health was indeed in my hands I may not be writing this same story. He advised me on diet and exercise and recommended practitioners in his holistic circle. I went in search of more “new and different” health practitioners to answer my questions and help me get control of my symptoms.
Along the way I encountered several modalities that helped manage my symptoms, and finally I found someone in a controversial new field called “functional neurology” who changed the course of my illness for the better.
From mid June 2013 to today, as I write this in mid November 2013, I am a different person. My face appears lively and alert and I look forward to waking up in the morning. I no longer stoop and can rise from a chair and stand upright without pain. My shoulder has regained nearly all of it’s normal mobility and is pain free. I have lost 30 lbs and have gained energy. My digestion is once again normal and healthy. I have regained my sense of smell, and more importantly, my sense of purpose.
My sense of purpose has a specific goal, and that is to recover from Parkinson’s Disease, to recover fully and to support others in doing the same. I have heard again and again that it is an incurable disease. I am here to tell you that this message of no hope and no possibility, this message that cements us in terror, is the voice of the Nothing. I hear it less and less these days but it still sometimes speaks with authority, insidiously creeping in despite all attempts to tune it out. If it manages to catch me off guard and pull me down, I reach out and grab hold of it. Once again we are engaged, wrestling, but now I am winning.
The Curables 
What did you do to get back what you had lost to PD? what is the program ?
Hi Connie,
I think it is fair to say that although many support therapies contributed to the healing process and brought me some relief, the single most powerful therapy towards actual recovery has been the Functional Neurology. It confirmed my diagnosis, yet the approach was one of possibility— and you are very actively involved in the process. It is very important to keep this sense of possibility, and to be patient.
Diet is of great importance, which I will be writing more about soon. I have not yet listed all the therapies I experienced but I will be adding things and adding the experiences of others as well as we go.
Also check out PDrecovery.org, a radically different approach and something to work on.
Best,
Laura
Hi Connie,
Just following up with a list of therapies:
chiropractic, massage, rolfing, yoga, cranial sacral therapy, rebirthing breathwork, continuum movement, shamanic healing, sound healing, functional neurology, non-contact boxing, yin tui na, psychological work on a feeling of safety and becoming more heart centered, transformational education.
As I remember more and try more I will add them.
Needless to say, I am astounded. I had no idea. Of course, I have been too self absorbed for a while to ask the right questions of you. If I can help in any way, let me know. I admire your fortitude and your ability to find the right way to go.
No worries Sara. It it a challenge I have been presented with and I intend to overcome it. I want to live a great life and I had to get sick to realize it and find my power.
Hi Laura,
I hope you are doing great and your experience with the Functional Neurology is still successful. Can you please explain this further and what kind of diet do you follow! I am 38 years old and I was diagnosed with PD several years ago . I look forward to hearing from you.
Joe
Hi Joe,
Thanks Joe! I am well, I hope you are well also. Unfortunately, in October I lost my job so I can not afford any kind of treatment right now, even though Dr Kaplan (the functional neurologist) was not expensive.
Still, I am doing pretty well. I have intermittent rigidity and tremor on the left side which I intend to address when I return to Dr Kaplan. I have just started doing some of the eye exercises he gave me again and for now I quiet my nervous system as much as possible with the continuum work.
Check out the diet I am using here:
https://thecurables.me/2013/12/18/diet-feeding-the-brain/
If you are in or near New York City, please consider coming to the question and answer about functional neurology that I am hosting through my Meetup support group.
Details here:
Questions and answers with a functional neurologist.
Saturday, Feb 1, 2014, 2:00 PM
Location details are available to members only.
4 PD movers Went
Dr Kaplan has much experience treating people with PD with functional neurology and has helped many of them regain function. Would you like to know if functional neurology can help you? Would you like to know how and why? Here is your chance to ask questions.
Check out this Meetup →
I hope this helps. If you want to chat more I am always here.
Best,
Laura
Hi Laura,
Thank you for your response and I hope that you are doing great. I would like to share with you something that seems very interesting regarding Parkinson’s disease. Recently, while searching for clues to fight Parkinson’s, I found out that there is a TMJ mouthpiece called: oral orthotic that reduces Parkinson’s symptoms . It is really amazing, please see this video:
I contacted Dr.Gary Demerjian’s who treated the patient in the video . Dr. Gary told me that there are only a few doctors that do this type of treatment. Many TMJ dentists make similar ones, but it is the adjustments to the mouthpiece to the specific needs of the person that make the difference.
Can we explore this further! I am curious to know your point of view about TMJ since we both have the same disease. I look forward to hearing from you!
Joe
Hi Joe,
Thanks for posting this!
I am not surprised that this treatment is effective. Both because I think EVERYTHING IS CONNECTED. and I have found chiropractic care of the cervical spine and adjustments of the TMJ to be helpful.
I got a recommendation from Dr D’s office for a doctor who does this in Maryland, since I am in NYC. I watched a video about him and called his office.
The total cost is about $5000. I would love to see some mainstream interest and studies on this treatment, so that this number, hopefully, could be brought down.
I think the functional neurology gives the same results and is less expensive, and lasting without wearing a device. However, I was impressed with the device’s dramatic results, especially in this video:
What is your location? What have you tried so far?
Best,
Laura
Hi Laura,
Thank you so much for sharing with me such valuable information. Well, unfortunately I don’t live near NY city. I live in Ohio but I am out of state now. My major problem with Parkinson’s Disease is freezing of gait known as FOG as I feel like my feet are glued to the ground, but that happens only in narrow and busy places.
For the time being, I am trying to find ways other than medications to reduce the FOG problem. I consider the TMJ mouth device that I shared with you as a good option. There are other things under development such as smart glasses, PD shoes, but they need more time to be improved.
For now, I am doing my best to stay in shape through exercise. From my own experience; I strongly believe that sport is very effective to slow PD down. I might consider trying the TMJ mouth piece, I only need to find a doctor who does it near my area. Do you mean by functional neurology, the diet you are following or is there anything else added to it? Please don’t hesitate to share your thoughts.
Yours
Joe
Thank YOU Joe, I had no idea about the mouthpiece.
From what I know, you are already on course, exercise is a huge factor. I am guilty of not getting enough of it but that will change soon as a Rock Steady Boxing class is coming to my area. They are specifically trained in working with all levels of PD. The folks that are offering it in NYC are great people and they gave me a sample class and I LOVED it. Here is a link to their affiliates, some in Ohio:
http://www.rocksteadyboxing.org/our-affiliates/
The diet is separate from the functional neurology. To find a board certified functional neurologist in your area, look here:
http://www.acnb.org/DoctorLocator.aspx
Tell me more about the glasses and shoes under development. I will make a page about things on the horizon!
Let me know how it is going.
Best,
Laura
Hi Laura,
Thank you for your reply. As a response to your request, The PDShoe is currently developed by the University of Delaware. According to the University, the PDShoe is an ordinary beach shoe equipped with force sensors and a vibration system.
Kyle Winfree, a doctoral student in UD’s Biomechanics and Movement Science program, explains that the vibration in the robotic shoe is synchronized to the heel strike and toe-off of the person wearing it, so it delivers a vibration every time the foot strikes the ground. Please see the video and the link below for more details :
http://www.udel.edu/researchmagazine/issue/vol4_no1/taking_steps.html
I strongly believe that the PDShoe will change the quality of life for many PD patients. In the same context, I have a suggestion, why don’t we contact the Michael J fox foundation to let them know about the PDShoe. The foundation may sponsor the project and accelerate the process of finalizing the PDShoe. Let me know what do think?
I have not forgotten about the smart glasses. It will be the subject of my next posting…
Yours
Joe
Thanks Joe!
I have created a NEW Research page and will continue to list these developments… thanks to you!
Sadly, I have not gotten much support from the MJFF. I got a pat on the head and was advised to join the PD support group they approve of, one which is not open to new things. However, this may not be everyone’s experience with them.
I do know that for research and development through MJJF, the doctors involved must contact them.
Send me whatever you find and I will list it.
Best,
Laura
Hi Laura,
I can’t find the words to thank you for the time you have dedicated to create the Research page. It is always good to spread the information out, we might get something positive out of it. Would you please send me the link of the new page once it is done!
As promised, I will give a brief overview about the Smart Glasses. They are developed by the University of Twente researchers under the leadership of Prof. Richard van Wezel. According to the University, Smart glasses would be able to provide patients with the regular visual or audible patterns required to avoid freezing of gait. Here is the link for more details and contact info.
http://www.utwente.nl/en/newsevents/2013/10/148648/smart-glasses-can-improve-gait-of-parkinsons-patients
Once again, Thank you Laura for your efforts and let’s all participate in a way or another to fight PD.
Yours
Joe
Hi Joe,
I am so glad to do it, and please acknowledge yourself for your contribution!
A passage from the article caught my attention:
“Researchers have established that the gait of patients improves when they regularly see or hear a pattern. Examples might include stripes on the floor, or the regular ticking of a metronome.”
I used similar sound and visual therapies when working with the functional neurologist. In fact, I used a form of smart glasses from Amsterdam to help retrain my left side. It is gratifying to have their effectiveness confirmed by research in addition to my experience.
Here is the research page:
https://thecurables.me/new-research/
Thanks for all the info and for being proactive. This is what makes a difference and will encourage more and more people to participate. Keep your ideas and findings coming and I will too. We will start a trend and develop the power in numbers that can make valuable new/alternative treatments available to the mainstream.
All the best,
Laura