My Journey with Parkinson’s and Lyme Disease

Here is an article I wrote for the Parkinson’s Foundation

My Journey with Parkinson’s and Lyme Disease

By Moira J Canes

Illness exists first

in the non-physical realm

of spiritual need,

emotional confusion,                                                                       

Or mental aberration.

It is never primarily physical.

The body is the reactor.

It vibrates to stress

And is an outward manifestation

Of inner turmoil.

Emmanuel’s Book, compiled by Pat Rodegast and Judith Stanton

It all started with a small twisting of my left foot back in 2009 when I was given the diagnosis of Parkinson’s Disease. Parkinson’s has been described as being both degenerative and incurable . I hope this article will inspire you and help you shift this counterproductive outlook.   I have read accounts of people who have made full recoveries. It was a complete shift in my attitude that has led to my gradual recovery which is ongoing.   I feel like a walking miracle thanks to the love, support, prayers and guidance that I’ve received from caregivers, healers, family and friends. This article is an account of my journey so far.

In thinking about writing this article I came to recognize 4 components to my healing journey.   These components cannot be separated from each other, but are interconnected. The first obviously is the physical. The second is emotional. The third is mental or psychological. The fourth and by far the most important to me is the spiritual.   It has been a journey that has been a testing and renewal of Faith.

When I was first diagnosed with Parkinson’s, I was able to continue working as usual, despite the tremours. I was seeing a homeopath/naturopath, taking pilates classes, having regular massages, going for long walks and doing bio-acoustic therapy which analyses your voice and tells you what chemicals, amino acids and nutrients are missing in the body. Using the technology, you can replace them by listening daily to sounds that replace the missing elements. I thought I was doing quite well. The big shift happened in January 2012.   The Transpersonal Therapy Centre (TTC), which I co- founded with my partner Brent, was going through a major upheaval.   I injured my back and was experiencing a lot of pain. To help me sleep I took some marijuana oil. Marijuana is a very powerful medicine plant. Its two main chemicals are THC, which is psycho-active and good for helping sleep and CBD, which is non-psycho-active, anti-psychotic and is good for relieving pain and anxiety.   Instead of calming me down and helping me sleep, the strain, or the amount I was given activated my nervous system.   My tremours went out of control and I went into high anxiety. I had a dark vision in which I felt that I had to let everything go – my practice as a therapist, teaching, facilitating groups (TTC), everything.   For 3 nights in a row I could not sleep. I also had difficulty breathing.  That’s when my GP put me on Lorazapam. Her argument was that I had to get sleep. I didn’t disagree.

I moved from Toronto to Bethany where I currently share a home with friends. Consequently I could no longer see the practitioners that I had been working with.

I received a call from the Movement Disorder Clinic at the Toronto Western Hospital, and was offered an appointment with Dr. Lang.   I had been waiting 2 years for this appointment.   Dr. Lang is purported to be the authority on movement disorders in North America. My GP and the neurologist I was seeing both urged me not to miss this appointment.   The neurologist I’d been seeing didn’t know what to do with me.   Somehow I made it down there.   A dear friend sat with me for 3 hours while I waited to see Dr. Lang at Toronto Western Hospital. One of his interns saw me, and then Dr. Lang came in and confirmed the diagnosis, and said I needed to see a neuro-psychiatrist to deal with the anxiety and breathing difficulties. In addition to the Sinamet which had already been prescribed, they advised me to go on Domperidone, much against my wishes.   The Domperidone was supposed to help with the nausea from the Sinamet by accelerating digestion. I could feel myself being swept along a path that went against everything I believed but I was pretty desperate.

When I saw Dr. Z, the psychiatrist, he observed that I appeared “lost”. I felt lost, like someone or something had robbed me of my soul.   I was in a very dark place.   He gave me a form to fill out before I came to see him and I was shocked to realize just how depressed I was. To his credit, he could see that I did not want to go on any more heavy drugs and he didn’t push me; however, I did start taking Mertazapine a mild anti-depressant that was supposed to help me sleep.   It worked for about two weeks.

Over time the anxiety got worse and worse. My weight dropped from 118 to 98 pounds. I felt like I was going crazy.   I was afraid I was going to wind up in a mental institution. I was in such pain; I completely regressed. I couldn’t reach out to anyone.   I was completely self-absorbed and I felt totally unworthy of being loved.   I was judging all the choices I had made in life.   I felt lonely, cut off, misunderstood and abandoned by God. I felt dead inside, like I was already in the tomb.   I was experiencing what in spiritual literature they call “the dark night of the soul.” What kept me sane was doing jigsaw puzzles and playing scrabble. I was afraid to be left alone. I needed company all the time.

Then Brent told me about a Dr. Bigelson, to whom he had been listening on the radio.   He is a maverick doctor in the US who has some very interesting ideas about the causes of illness and how to heal. One of the things he recommends is live blood analysis.   I contacted him and sent blood samples. We talked on the phone, and he suggested I see a Dr. X, and that was the beginning of the turnaround.

Fifteen months after the initial crisis. Dr. X did some preliminary tests and said that I tested positively for one of the strains of Lyme disease. He recommended further blood tests.   I sent some live blood slides to Igenix.   Much to my surprise the results confirmed Dr. X’s suspicions.   He referred me to a Naturopath who specializes in treating Lyme disease, and who offers Bi-Com treatments. Bi-com is a new energy medicine technology that identifies the viruses, parasites, moulds, co-existent infections and food sensitivities, and then neutralizes them using the Bi Com technology. He also immediately recommended that I stop taking Domperidone and Tecta which I was taking to prevent the nausea from the Sinamet. These meds ruin your digestive system. I was experiencing excruciating stomach pain and could hardly eat. Although they could not find an ulcer when the gastroenterologist did a scope, I was pretty sure I had one. It took a while for me to start feeling that the Bi-com treatments were working, but the alternative would have been to go to the U.S. for extensive antibiotic treatments for the Lyme Disease. Knowing the harm that antibiotics can cause, I certainly didn’t want to go down that road. I continued to suffer from insomnia and anxiety, which resulted in a tightening of my diaphragm, that restricted my breathing.   I started to see a physiotherapist, who recommended I see a local pharmacologist, who specializes in naturals.   I was taking a large number of supplements to manage the anxiety and insomnia and he helped me streamline and eliminate duplications.   He also supplied me with a calming tea, which I drink throughout the day.

Gradually I have been able to reduce the amount of Sinamet from 6 tablets to 1 1/2, and Mirapex from 3 to 2. Instead, I am taking a natural form of Levadopa called Mucuna Pruriens. The dyskenesia has completely disappeared. I am still trying to wean myself off Lorazapam. I also stopped taking Mertazapine because it had stopped working.   In its place Dr. Z. recommend I try St. John’s Wort for depression. The solution to my insomnia has been to take medical marijuana, and Quetiapine. My health has improved dramatically since I have been able to eat and get proper sleep.

This is what I have been doing on a physical level.

I realize now that what made the biggest difference was the shift in my attitude. I came to realize that I didn’t want to die in this anxious state of mind. I was shocked to discover that despite years of psychotherapy I had a cruel, cynical, judging sub-personality that was pretty unforgiving.   I had to learn to forgive and love myself. When I was no longer able to work as a therapist, and was completely absorbed in my illness. I felt my life to be meaningless. I was reminded of the Holocaust survivor Viktor Frankl, and his book “Man’s Search For Meaning”. In it he says “…everything can be taken from a man but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way….If there is a meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death, human life cannot be complete.

 “ The way in which a man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – even under the most difficult circumstances – to add a deeper meaning to his life. It may remain brave, dignified and unselfish. Or in the bitter fight for self-preservation he may forget his human dignity and become no more than an animal. Here lies the chance for a man either to make use of or forego the opportunities of attaining the moral values that a difficult situation may afford him. And this decides whether he is worthy of his suffering or not.”

I also read Emmanuel’s Book. Emmanuel is a spiritual being whose teachings were channeled by Pat Rodegast. The book helped to renew my Faith. Thanks to my friends, spiritual guides, and reading Emmanuel’s Book, I was able to experience God/Goddess’s love and the Divine. I stopped experiencing myself as a victim and began to look upon my illness as a process of spiritual purification.   I looked for things for which to be grateful, and instead of isolating myself I began to reach out to those I cared about. I came to realize that through all the love and support of my family, friends and former students, the Divine had been supporting me all the time. I now see my body as my teacher.

Gradually, I am becoming more independent again, taking charge of my life. In the winter and spring of 2015, I started to do watercolour painting, and derived great pleasure from it. I decided to participate in the Rolling Hills studio tour, and I began experimenting with making greeting cards with matching envelopes using gelli pads and acrylics.   Creating beauty brought me great joy. I also started driving again, seeing clients, reaching out to friends, preparing meals for myself and friends and taking pride in my appearance. Knowing how important exercise is in addition to walking, I recently took up yoga which is helping me strengthen my body and improve my balance and posture.

Currently I am reading a book by Norman Doidge called The Brain’s Way of Healing, and I am exploring the neuroplasticity of the brain. The book is inspiring and informative and encourages me to keep searching for a way to heal. I’m hopeful that using new technology called Neuroptimal will improve my sleep, anxiety and tremours.

Finding the path to healing is a very individual matter. I hope that sharing my journey will in some way inspire and encourage you to not just accept the usual, gloomy prognosis but have faith that you can heal and live a full and meaningful life.