I am a 52 year old white female. I was diagnosed with Parkinson's Decease about nine years ago. Since nobody in my family had that condition, I was not too knowledgeable about it. However, after the neurologist who diagnosed me made sure that I understood that “Parkinson is a progressive, degenerative neurological condition, that only gets worst with time, and there is no cure for it”, I decided to empower myself and learn as much as I could about this condition. I clearly remember deciding that I was not going to seat and cry about it, but instead, I was going to see it as a” challenge”. I also decided that to handle this condition, I would have to take “one day at a time”.
The first five years went by without any major problems. I kept my schedule and my routines; I worked, exercised, walked and ran. Parkinson's was not going to conquer me. I took enough medication to have a therapeutic effect, and minimal side effects. I did not feel the need to share my condition with my colleagues. . Not even with my extended family.
The last 3 year are a different story. My ability to walk became more impaired, and I started shuffling a great deal. I was very tired during the day, and I became self-conscious of my looks. My writing became smaller, almost illegibly and my posture deteriorated even more. But the worst thing was thatin this process, I was also losing my self confidence. Because I was so afraid of falling, I starting isolating myself, turning down invitations from my friends to go out, and emphasizing my shortcomings and my limitations, instead of mystrengths. I, unconsciously, was impairing myself more than I really was, by “assuming” that because I had Parkinson, I would not be able to do certain things. Parkinson took over my life. I stopped walking the dog, I stopped riding my bike, I stopped going to the gym, I even missed events such asconferences workshops, and open houses.
By now, I was walking with a cane.
I developed a “love/hate” relationship with my cane. Someone recently told me that canes need to be named. I didn't name mine, because I felt (as unrealistic as it may sound) that she was only going to be with me temporarily so I did not want to “emotionally attach myself to it.
Besides going to my neurologist, I received a “second opinion” of several other “well known” movement disorders experts. Basically, their message was that I was a “very good candidate for the Deep Brain Stimulation surgery. However, I still was not prepared for that.
Since the situation continued to worsen, I started thinking of the unthinkable, the DBS option. I still did not feel emotionally ready, but I felt that the quality of my life was decreasing more than I was willing to accept…
Life works in unexpected ways. Sometimes, when we think that all the doors are closing on us, a window opens and we see the sunshine again. This happened to me about a month ago. My brother-in law sent me some information from an Israeli magazine, regarding a martial arts professor whowas doing innovative work with Parkinson patients. The title of the article wasGyro- kinetics. I was immediately attracted to their website, and “knew in myheart" that the program was for me.
After having tried all the agonists in the market, and almost all Parkinson's medications with negative side effects, after trying unconventional approaches such as acupuncture, touch for health, lifeline techniques, tai-chi , and osteopathic remedies without long lasting results, I felt more than ready to listen to what my gut feeling had to say. My instinct was touched by the philosophy behind the Gyro kinetic approach: "To help the Parkinson patient move from being a professional Parkinsonian, to being a healthy person withParkinson…
I became in contact with the center, and we worked out the details of the trip.
On 7/1/09 I arrived at the center. I was walking with a walker, since the unnamed cane was no longer doing her job. I felt somewhat awkward when the lady in charge of the oversea patients, and with whom I had created a friendship by now, told me I would not need the walker during my first interview with Alex. She added that I would also "forget about the medication"
I had my meeting with Alex and his staff. He explained how the program worked. Gyro Kinetics is a rehabilitation program that includes 3 parts, functional movements, therapeutic massage and psycho physiological behavior.
Because living out of the country, the program had to be consolidated in 10 days, 2 1/2 to 3 hours long every day.
After struggling for the last 3 years with doctors, medications and differentopinions, it becomes difficult to explain with words the impact that thisprogram had on me. The first thing that I regained, was my self-confidence; and because of that, I said “good-by "e to my walker” after only 3 days
This program emphasizes the importance of breathing, translating the music into rhythmical movements, feeling the music, facial expressions, and exaggerating the movements as if we were acting, improvising, and taking our time to talk, to eat, to behave. In essence the key of the program is to act as if we did not have PD, so the PD gets "confused" when the body acts in a different than expected way… To deprogram ourselves, we need to substitute our long term memory, with a new long term memory thru automatization. This takes time and a lot of patience.
But mostly, it takes a teacher willing to be there for his students, a teacher who is disciplined, consistent, reliable, honest, tough, and that never gives up. That role model is Alex Kerten. He will not treat his students with coated sugar, but he will deliver a clear and conscious message. He will not allow the student to be mediocre; he wants his students to use all their potential, just as he does. Alex is the example of an excellent, yet human and humorous teacher.
I had also the opportunity to participate in 2 dancing groups, where I met people that inspired me greatly.
Overall, my experience in the GK program was very positive. It showed me that there is hope, that there are possibilities to improve, and techniques to use. I only regret not having met that wonderful team, earlyer. I wish the neurologists that I visited, had half the compassion that Alex shows thru the innumerable hours he puts in his very dedicated work.
It is important to notice that in order to benefit from this program, the person should be willing to try something very different, and be willing to tolerate frustration. It will always pay off.