Category Archives: Meditation

Stress and Parkinson’s Disease

It is well known that stress has a direct and profound impact on the symptoms that are associated with Parkinson’s Disease. The connection is immediate. When you are stressed symptoms of Parkinson’s Disease will inevitably flare up.

Without stress, the symptoms of Parkinson’s have a terribly difficult time showing up. How can you reduce the stresses in your daily life? One profound, natural and effective approach for reducing stress is to become more mindful and present to the each and every moment.

I must confess I did not have a clue how to become more mindful until I began a project in collaboration with Nancy Welch several years ago. Nancy, a psychotherapist and expert on Mindfulness as well as chronic illness, and I conducted interviews with national experts on mindfulness during 2010. Their wisdom is now captured in Nancy’s new book, Medicine and Meditation, which has just been released as a paper back and a download to your computer.

Nancy Welch’s new book is entitled: Medicine and Meditation, Conversations on Mindfulness in the Management of Chronic Pain and Illness is a true gem. Some of you may have listened to some of these interviews when they were aired live. Her new book explains in detail how we all can become more mindful which reduces stress and invites our hormones to come back into balance. I believe the potential for reversing the symptoms of Parkinson’s is significant when mindfulness is practiced. .

The print book is $14.99 and the download is $9.99. For further information and to order, visit:

www.medicinemeditation.com

Robert Rodgers, Ph.D.
Pioneers of Recovery
www.pioneersofrecovery.com

Relaxation of Muscles with Qigong and Meditation

Question:

Is it true that people with parkinsons experienced a harder stomach than others…what I mean is, my Mom seems to have a very hard stomach as a result of toxins/wind inside.  And it seems to be the case that with the recovery process her stomach is a bit softer (e.g. she’s been doing Gi Gong and meditation).  Is this what you heard from people who are recovering?

Which other aspect of the body have you heard of improving during the recovery process?  I’m presuming tremors takes the longest to heal?

Gino

Response:

Many people who currently experience the symptoms of Parkinsons have very rigid and tight muscles. Energy workers have told me that the bodies of some persons feel like concrete to them when they first start working with a client. After several treatments the muscles soften and the person becomes much more flexibile.

Your Mom is accomplishing the same transformation doing Qi Gong and Meditation. Congratulations to her. May she now celebrate her remarkable accomplishment. She is now officially on the road to recovery.

You also ask what aspects of the body improve during the recovery process. For most people the journey to recovery is rocky. Once cetain therapies are started a healing response will be experienced. Some people feel better instantly. This is rare. Most people can and often do feel worse before they begin feeling much better. It takes a little time for the body to make the adjustments that are needed to return to full balance and hormonal harmony.

In response to your last question, I have been told by a number of people that tremors are the last symptoms to resolve.

Robert Rodgers, Ph.D.
Parkinsons Recovery
http://www.parkinsonsdisease.me

Wisdom from the Foot Whisperer

Angela gave me permission to post her story and pictures below on recent therapies she has found have offered relief from the symptoms of Parkinsons she currently experiences.

Robert Rodgers, Ph.D.
Road to Recovery from Parkinsons Disease

I met the author, Randy Eady, in Delray Beach, Florida, where he is known as the “Foot Whisperer” for his promotion of whole body health through treatment of the feet.  I was intrigued as he had apparently had the same insight as Janice Walton-Hadlock in that PD is related to a blockage of Chi energy in the foot.   I saw Randy for several sessions over the period of a month.  He calls his work Ancient Walking to Primal Rhythms, a form of “movement meditation.”  Each session began with a soak of my feet in a mini hot tub, followed by a foot massage concentrating on acupressure points particularly K1 (kidney 1).  He had me try a number of different modalities:

– Walking on a pebble mat (also called a Chi mat).  At first this hurt a lot – like walking on stones! – but I have become used to it.  Randy gave me a pebble mat to take home with me and I use it faithfully every day.

 

– Wearing shoes with individual toe sleeves.  Randy got me a pair of Fila “skelatoes” shoes that are the next best thing to going barefoot.  Shoes of this type are all the rage right now in the world of running.  I find them exceptionally comfortable and superior to any walking shoe that I have ever owned.

– Non-focused eye movement.  He gave me a number of exercises to do that help train the sides of the brain to do tasks that formerly the other side had done (at least this is my interpretation of the exercises). -Tai chi.  Randy instructed me in the first half dozen movements of tai chi, both sitting and standing.  I am afraid I am a slow learner (could never learn to dance either) but feel that tai chi is one of the keys to solving the PD problem which I am coming more and more to believe is an electrical problem that can be corrected.

– Counterrotating arms.  At least this is something I can do quite easily: rotate one arm clockwise and the other arm counterclockwise.  Again, I feel that this is about training the brain and creating new neural pathways.

– Vibroacoustic lounge and vest.  Randy obtained both of these on loan and I was able to try both.  I had previously used a vibroacoustic lounge at Robert Rodgers “Jump Start to Wellness” workshop in December 2009.  In my opinion, the vibroacoustic vest was just as effective.  The deep vibrations produced by the vest or lounge seem to entrain the tremours of PD, offering considerable relief.  The sessions I had were highly relaxing; indeed, I fell asleep.
– Tuning forks.  It is interesting how a tuning fork held against acupressure points, particularly the one on the top of the head, feels so very good.

– Walking in nature.  Randy introduced me to Delray Oaks, an incredible nature preserve that was less than half a mile from our condo.  Walking through that park was one of the most joyous experiences I have ever had and I was literally overflowing with gratitude.

– And so much more.  Randy Eady is a true Renaissance man for the 21st-century who has something significant to offer to people with movement disorders such as PD.

Blessings from the blessed,

Angela

Parkinsons Disease Treatment Options

Angela Wensley was a guest on my radio show on October 28, 2010. You can listen to the show by visiting http://www.blogtalkradio.com/parkinsons-recovery.  Angela wrote a thorough update describing the treatment options she has pursued. Her update is posted below. Robert Rodgers, Ph.D.

This update is intended not only for my friends and family, but also for people who have been diagnosed with Parkinson’s disease (PD). Please feel free to pass this on to anyone that you may know who has a diagnosis of PD as they may find some of the information helpful. I was diagnosed with the symptoms of PD in May 2007, over 3 1/2 years ago at age 59. At the time of diagnosis, I was informed that not only was the cause unknown (“idiopathic”), but also that it was irreversible and progressive. Initially, I questioned the diagnosis but any doubts were resolved when I traveled to Los Angeles in September 2007 for a PET scan that confirmed (in medical-speak) that there was: moderately decreased dopamine accumulation into the posterior putamen on the left side of my brain, consistent with PD. Since then, I have come to accept the diagnosis as my symptoms have become rather “classic”. In particular, I have tremours in my right hand and these have become increasingly worse as the years have progressed.

The progression of my PD symptoms has not been linear, but instead I experience it in waves with definite peaks and valleys. The symptoms can be pronounced for a number of days interspaced by days of calm where I am almost symptom-free. Over time, however, the general trend has been a gradual progression downward (probably corresponding to dopamine depletion in the part of my brain responsible for motor activities) with the valleys becoming more savage and the peaks becoming shorter. In addition, there can be variations in my tremours during the day. When I am relaxed, I have no tremours. When under stress, or excitement, or cold, the tremours become more pronounced.

The worst situation is “White Coat Syndrome” whenever I visit a medical doctor or a neurologist. On those occasions, my tremours are effectively out of control. Other PD symptoms such as impaired arm swing, problems with gait, problems with balance, and constipation are so far in the mild category. Besides tremour, the other most bothersome PD symptom for me has been “micrographia.” As I can no longer move the fingers on my right hand, my ability to write has decreased to the point where I have ceased keeping a daily journal, something that I had been doing since the 1980s. Also, typing has become difficult and slow. Luckily, Dragon voice-activated software has come to my rescue and I now dictate most of my communications (such as this update).

I plot the progression of my PD every three months using the Parkinson’s Disease Rating Scale (PDRS) from 0 to 100 on the website www.PatientsLikeMe.com where my patient name is “Dawn Angel”. My current rating is 7. It has been as high as 14. My human tendency is to self-evaluate when I’m feeling good so it is possible that my PDRS is higher at some times.

So far, I have avoided taking any of the Parkinson’s medications (with a brief exception of one month after I was first diagnosed when I took Mirapex, a dopamine agonist that for me had dreadful side effects). To me, the PD medications are a last resort. Since they will only provide a certain number of years of effectiveness it seems reasonable to forestall taking them until it is absolutely necessary, that is, when having the symptoms is no longer preferable to the side effects of the meds. I have been able to work for three years post diagnosis but I’m at the point where it may not be possible to continue working as a freelance consulting engineer. I haven’t had any jobs since June 2010, so it is difficult to say if it is time for me to retire.

RESOURCES

I am fortunate to have two outstanding neurologists on my side, Andrew Wolfenden and Jon Stoessl, although I only see them once a year. Stoessl is the director of the Pacific Parkinson’s Research Centre. I see him at the Movement Disorders Clinic at the University of British Columbia in Vancouver. With Western medicine offering only drugs that mask the symptoms of PD and unable to otherwise treat the condition, it is inevitable that a person diagnosed with PD will seek out alternative forms of medicine. My naturopath Caleb Ng

www.mountainviewwellnesscentre.ca/

is a valuable part of my team. Ideally, a person diagnosed with PD should have a team of practitioners, including at least one neurologist, their GP, a naturopath, a physiotherapist, an herbalist, a massage therapist, a personal trainer, a psychotherapist, and others. The reality, however, is that no “team” really exists. My personal trainer may know my chiropractor, and my naturopath may have met my neurologist, but this is not team behaviour. The cold truth is that each patient is pretty well left to their own devices. So one must be proactive and become better informed, often more so then their practitioners. We are the keepers of the complete story.

There are many very good publications on PD available in book form. Some that I have found to be exceptional are:

1. Jill Marjama-Lyons and Mary J. Shomon, “What Your Doctor May Not Tell You About Parkinson’s Disease,” Warner Books (2003).

2. Gretchen Garie, Michael J. Church, and Winnifred Conkling, “Living Well With Parkinson’s Disease,” Collins (2007).

3. David A. Grimes, “Parkinson’s: Everything You Need to Know,” Firefly Books (2004).

4. Geoffrey Leader and Lucille Leader, “Parkinson’s Disease: Reducing Symptoms with Nutrition and Drugs,” Denor Press (2009).

5. Laurie K. Mischley, “Natural Therapies for Parkinson’s Disease,” Coffeetown Press (2010).

6. Abraham Lieberman, “100 Questions and Answers about Parkinson’s Disease,” Jones and Bartlett (2003).

7. David H. Anderson, “How to Tame Parkinson’s by Keeping Fit,” Authorhouse (2005).

8. John Ball, “Living Well, Running Hard,” Authorhouse (2005).

9. Arthur W. Curren, “Dumb Bells and Dopamine,” Authorhouse (2006).

Downloadable books from the Internet include:

1. John C. Coleman, “Stop Parkin’ and Start Livin’: Reversing the Symptoms of Parkinson’s Disease,” available for a fee from www.returntostillness.com.au

2. Robert Rodgers, “Road to Recovery from Parkinson’s Disease,” available for a fee from www.parkinsonsdisease.me

3. Janice Walton-Hadlock, “Recovering from Parkinson’s Disease: Understanding its Cause and Mastering and Effective Treatment,” available for free from www.pdrecovery.org/ (I do not necessarily endorse the concepts or opinions of the author but found it a compelling and worthwhile read; too bad she won’t converse with anyone that has been on PD meds such as Mirapex for a month!)

There are almost unlimited resources available on the Internet. By far the best PD website is www.PatientsLikeMe.com that has over 5000 members with PD.

My “Dawn Angel” profile there has been browsed over 7000 times at the time of writing this update.

PD PREVENTATIVE MEASURES

The various measures I have taken in my attempts to slow the progression of PD are listed below in approximate order of effectiveness (my perception). The regimen I am on is constantly changing but the overall goal remains the same: to feel as good as I can.

1. Exercise.

2. Physiotherapy

3. Neuroprotective supplements

3. Diet

4. Chelation

5. Brain therapies

Exercise

The initial diagnosis of PD scared me so much that I decided I had to get into the best possible physical shape to be able to combat the progression of PD. I also engaged a personal trainer, Julie Beenham, to keep me honest. I have seen Julie since June 2007 and would consider our sessions the single most effective measure I have taken against my PD. Within a few months, I had dropped over 40 pounds through a regimen that included running every morning for 5 miles (running for my life) plus extensive workouts in the gym in the afternoon in addition to my sessions with Julie. While my initial reasoning was correct in terms of my being better prepared to withstand the ravages of the disease, I have since found out that intense physical exercise can also have neuroprotective benefits. All the more reason to keep it up. I counsel other people with PD to start exercising and keep at it even when they don’t feel like it.

My exercise regimen has varied significantly over the years, particularly with the seasons, but exercise still remains the most effective method I have found for relief from the symptoms of PD. I have also had to accommodate changes to my body thanks to Mr. Parkinson. For example, I have nearly-constant pain in my right hip that now prevents me from running or from using certain equipment in the gym. When I find I can no longer do one thing (use an elliptical training machine) I do whatever I can to keep that it. A “toe crest” helped keep the toes on my right foot from curling under; I still use toe sleeves to prevent the formation of corns. When these measures weren’t enough I found something else that I could use: a stationary bicycle. I will continue with this practical approach as long as I am able. Whenever possible, I indulge in two of my favourite sports, tennis and kickboxing. Not bad for someone who’s 63 years old!

Gym

Currently, my gym workouts consist of roughly 30 minutes of cardio, 30 minutes of weight training, and 30 minutes of stretching. As mentioned above, the cardio originally was done on an elliptical machine but now I use an upright bicycle. Weights involved a number of machines but also free weights (dumbbells). I have found that stretching is an important component of any exercise regimen and worth the time taken for it.

Personal trainer

I see my personal trainer Julie twice a week for one hour each time. In our ever varying routine, she has me attempt a number of balance exercises. I can balance on my left leg very well but balance on my right leg is problematic. Standing on a wobble board is possible but is becoming an increasing challenge for me. We do part of each session with my eyes closed which seems to be helpful. Each session ends with stretching, the best part!

Tennis

I had given up playing tennis in 2005 after a rotator cuff injury made it impossible for me to raise my right arm (I am right-handed) out to the side and overhead. Little did I know that a “frozen shoulder” is often a sign of PD. In 2008, on the advice of a friend who had seen an amputee play tennis again after switching to his left arm, I resumed playing tennis as a lefty. When my right arm finally came around in 2009, I morphed into an ambidextrous player with both right and left handed forehands. We bought a condo in a tennis community in Delray Beach, Florida that we visit twice a year for a month each time and were I can indulge my tennis habit. Back home in the relatively cold Northwest I see a tennis coach on a weekly basis and play indoors during the winter.

When I play tennis, my PD symptoms also take a vacation although videos show that I am clearly compensating for any impaired movement. Nonetheless, my footwork is good as is my ability to run and make shots from either side of the court. Why this is so is not really clear to me. Perhaps doing something that one really loves is conducive to generating dopamine, the neurotransmitter in short supply in the brains of people with PD. I suspect that it has something to do with the repetitive nature of the game and the delightful sense of vibration when the ball is well struck. For this reason, I prefer “tennis therapy” with a coach feeding me shots, to actually playing a game. I have noticed that on those rare occasions where I summon up extra energy through adrenaline (which consumes dopamine) I pay for it later in terms of a short-lived exacerbation of my PD symptoms. The trick is to learn how to stay relaxed while playing the game.

Kickboxing

It was Julie my personal trainer who introduced me to kickboxing. The kickboxing I do is not in the ring (!) but rather with a partner holding pads or in a gym with a kickboxing circuit. In the summer I am able to set up a punching bag outdoors in the carport but most of the time I now go to “30 Minute Hit”, a local kickboxing circuit. There is something about the contact and the vibrations from the punches that help calm the symptoms of PD. Besides, it just feels good to hit someone! There is clearly some adrenaline production involved with kickboxing as my tremours are usually set off for several minutes after I complete the circuit.

Physiotherapy

Since my diagnosis with PD, I have seen a number of physiotherapists. I am relatively good at following orders and did whatever exercises they recommended, with satisfactory outcomes. Initially, my focus was to regain the use of my right arm. More recently, I have been addressing the progressive effects of PD on my body.

Prolotherapy

As mentioned above, I had given up playing tennis in 2005 after a rotator cuff injury. After my diagnosis with PD in 2007, I worked very hard on regaining the function of my right shoulder. I underwent two months of prolotherapy from a naturopath where dextrose was injected into my tendons (hurt like hell) to promote improved blood supply and healing. In this regard, the prolotherapy was very effective, although I still had to follow up with more than a year of intense physiotherapy. There is still some residual pain in my right shoulder and a tendency for the femur to sit outside of its socket, but for all intents and purposes I have regained a full range of motion. I continue to receive physiotherapy on my right shoulder.

Intramuscular stimulation

In 2009, I began to see Dan Sivertson, a physiotherapist who practices “Intramuscular Stimulation” (IMS), a therapy developed in Vancouver BCwww.istop.org/. IMS is a form of “scientific acupuncture” where the needles are inserted into the problem area such as tight or shortened muscles, without application of electric current (I have little time for non-scientific or traditional acupuncture that relies on mythical meridians to determine where the needles should be placed.). The results of IMS have been amazing and muscles that I thought had been irrevocably tightened have loosened up. There has also been a significant reduction in pain, especially in my right hip. IMS must be considered as part of a complete physiotherapy package that includes myofascial release and massage.

Currently, Dan and I are working on improving my posture. One of the progressive features of PD is the gradual tightening of muscles that progressively cause a stooped posture. With weekly sessions of physiotherapy and daily posture exercises we are keeping the ravages of PD to a minimum at least as they affect my posture and mobility.

Chiropractic

While some people regard chiropractic as a pseudoscience, my experience has been that it is very effective for treating lower back pain. I have had lower back pain for at least 30 years, well before my diagnosis with PD. Whenever I put my back “out” I see a chiropractor as soon as possible and usually a few adjustments set me right. In the past, I used to go for physiotherapy and it took over a month to get any benefit. Chiropractic is faster and more effective than physiotherapy for relief of lower back pain, in my opinion. In addition to chiropractic, exercises to strengthen my “core” help me to recover quickly from recurring back injuries.

Myofascial release

Deep tissue massage is another form of physiotherapy that I have found to be beneficial for PD. In 2010, I had a package of 10 sessions of Hellerwork. Over a couple of months, my Hellerworker Melissa Patton accessed and massaged all accessible fascia of my body. Despite the intensity of the bodywork, the sessions were soothing and felt heavenly.

Air splint

I am currently experimenting with an inflatable splint of the kind used for retraining of stroke patients by immobilizing spastic limbs. The splint is used to straighten my right arm and eliminate the crook in the elbow. I use it three times a day for 10 minutes at a time. It feels good to have my arm straightened.

Minimal contact therapies

There are a couple of therapies that have reportedly had good effect on people with PD. One of these is Bowen Therapy. I have had several sessions of Bowen and found them very relaxing but did not experience any lasting effects. I did, however, find that osteopathy was effective. I have seen in osteopath in New Zealand on a few occasions when I was working there and found his techniques to be effective in reducing lower back pain as well as being very relaxing. If there was a local osteopath, he or she would be in my “team” of caregivers.

Neuroprotective supplements

Neuroprotective supplements are also referred to as “anti-aging” supplements or “mitochondrial enhancing agents” and are taken in addition to the conventional antioxidants (such as vitamin C, beta carotene, vitamin E, and selenium). Most of these supplements are taken orally; the very powerful antioxidant glutathione must be taken intravenously. While I am normally very skeptical of practices that come across as pseudoscience, I can appreciate the rationale for taking supplements that could protect the brain.

The first neuroprotective supplement I began taking (in 2007) was co-enzyme Q-10 after I read that a small clinical trial had revealed that it slowed the progression of PD. Subsequent, larger, studies have not found any beneficial effect on PD but I was willing to go with at least the chance of a good result. I have since learned that the ubiquinol form of co-enzyme Q-10 is superior to (and more expensive) the ubiquinone form.

In 2008, I chanced upon “The Better Brain Book” by neurologist David Perlmutter http://renegadeneurologist.com. The book contains a chapter on maintaining brain function using antioxidants and other compounds that facilitate the functioning of existing neurotransmitters. The protocol recommended by Perlmutter for PD patients is more extensive than that recommended for normal people who simply wish to improve their brain function.

I am currently taking the following neuroprotective supplements:

– Alpha lipoic acid* (time-release) 1200 mg per day.

– N-acetyl cysteine* 600 mg per day.

– Phosphatidylcholine 420 mg per day.

– Phosphatidylserine* 100 mg per day.

– Acetyl l-carnitine* 500 mg per day.

– Co-enzyme Q-10* (ubiquinol) 600 mg per day.

– NADH 5 mg per day.

– DHA + EPA (omega-3*) 660 mg +330 mg two times per day.

– Glutathione* (intravenous) 2500 mg per week.

* Recommended by David Perlmutter.

The glutathione IVs are administered by my ND, Caleb Ng. The protocol is that recommended by David Perlmutter. By the way, there is a video with David Perlmutter showing the near-miraculous effects of glutathione injections on people with PD http://www.glutathioneexperts.com/benefits-glutathione.html that to me seems to be a startling example of the “placebo effect.” I have never experienced anything even remotely resembling the improvement rapidly shown by the people in the video but again, my PD symptoms are not as advanced as those shown in the video. If glutathione has any effect on my symptoms, I believe that glutathione has produced a small (1-2) decrease in my PDRS.

In addition to the special mitochondrial enhancing supplements, I take vitamin C in both in time-release form and also as mixed ascorbates (total 4800 mg vitamin C per day), vitamin D drops (4000 IU per day), selenium drops (260 mcg per day), and zinc drops (30 mg per day) and others. I have my blood work checked regularly and have near-ideal results (all parameters within reference ranges). For years my cholesterol was chronically high and required meds for regulation; now it is excellent (high HDL and low LDL) without meds. Also, I used to be on meds for high blood pressure; now my blood pressure is close to ideal (typically 110/65) and I no longer take meds.

Although it is difficult to say whether all of these supplements are having any effect on my PD, I figure that at least I am extending my life!

Diet

The first alteration to my diet was to eat mostly organic foods to minimize the amount of pesticides that I was incidentally ingesting. Pesticides have been implicated with PD in some cases so I was not about to take the chance that my PD was unrelated to pesticides. I also began eating more fish and less red meat. In 2009, I heard about Donnie Yance, an herbalist in Ashland, Oregon, who had a protocol for treating patients with PD. I read his paper, “Parkinson’s Disease and the Use of Botanical and Nutritional Compounds” and was impressed withhis knowledge. In July, 2009, I traveled to Ashland and saw one of his associates, Jason Miller who has become my herbalist.

Botanicals

Jason provides me with a number of proprietary botanical formulations marketed under the Natura brand from the Centre for Natural Healing in Ashland, Oregon www.centrehealing.com. These contain botanicals that have been known to have a beneficial effect on PD, including:

– Mucuna pruriens (a natural source of levodopa)

– Hyoscyamus niger (henbane)

– Withania somnifera (Ashwagandha)

– Turmeric

– Green tea extract

– Piper methysticum (kava kava)

– Panax ginseng

– Bacopa monniera

– Scutellaria lateriflora (skullcap)

Of these botanicals, the first two on the list are perhaps the most potent. Mucuna pruriens is a natural source of levodopa and has been found to be more effective than synthetic levodopa in clinical trials. I have experimented with not taking the Mucuna and not noticed any difference, although perhaps I am not yet at the stage of my PD were levodopa is necessary. I am currently in a trial of titrating in with Hyoscyamus niger that is supposed to be effective against the tremours of Parkinson’s. So far, at 30 drops a day of a 1:10 tincture, it seems to have appreciably mitigated my tremours but it is too early to confirm it as effective at this time. Any beneficial effect is overwhelmed if stress rears its ugly head. Stress trumps hyoscyamus every time in the tremour department.

In addition to the above botanicals I also use products such as Natura “Beyond Whey” and “NanoGreens” that, amongst a host of other ingredients including frozen blueberries, make up a morning smoothie that I make every day. The Centre for Natural Healing also prepares a custom “tonic for me that I take twice a day. The tonic contains ginkgo, gotu kola, milk thistle, orange peel, kava kava, liquorice, skullcap, and other botanicals.

Gluten-free, dairy-free, and sugar-free diet

In 2009, I traveled to Melbourne Australia where I met John Coleman, a naturopath who has recovered from PD. Of course, I was very interested in doing whatever he did to recover. Amongst his recommendations was a change in diet to gluten-free, dairy-free, sugar-free (and others). I saw John again in 2010 and he said that I was doing well and to stay the course. He said the last of his symptoms to go was the tremour. This gives me some heart as tremour is the most bothersome of my symptoms.

In their book, “Parkinson’s Disease: Reducing Symptoms with Nutrition and Drugs,” Geoffrey and Lucille Leader advocate a gluten-free and dairy-free diet for people with PD. I am not lactose-intolerant nor do I have a gluten intolerance (this has been confirmed by genetic testing with www.23andMe.com) but their reasoning is compelling. It is possible that people with neurological disorders such as PD are much more sensitive to lactose and gluten than are people without those disorders. Luckily for me, we live in an age where it is possible to btain gluten-free and dairy-free foods readily. My favourite gluten-free bread is “Udi” available from Whole Foods in the US (but alas not in Canada). I substitute almond milk for regular milk. Dining out can be a problem; however, I travel a lot in my work and have found that the chefs in hotel and other restaurants are more than willing to meet my dietary requirements.

Adrenal support

In early 2010 I had a saliva test to determine my free cortisol rhythm. Samples were taken at 8 AM, noon, 5 PM, and at midnight. My cortisol levels for morning, noon, and afternoon where all markedly depressed (only the midnight sample was normal), indicating (according to the report) marginal HPA (hypothalamuspituitary-adrenal) performance. I purchased an excellent book, “Adrenal Fatigue,” by James Wilson that help to explain the significance of my results. Low cortisol, or hypoadrenia, is normally characterized by fatigue, difficulty rising in the morning, a desire for caffeine, feeling run down and stressed, etc. Other than perhaps a desire for a daily cup of coffee, I have none of these symptoms. Indeed, I seldom experience fatigue and still consider myself as a high-energy person. Yet, people with hypoadrenia have a reduced ability to cope with stress. Interestingly, people with PD report that their symptoms are aggravated in times of stress. There has to be some sort of connection between the symptoms of PD and impairment of HPA performance, but so far discussions with my neurologist and endocrinologist have not revealed any knowledge by them of any connection.

The danger is that people with hypoadrenia are on the borderline of having adrenal fatigue (no cortisol). When cortisol reserves are too low, and a stressful situation occurs, one may not be able to produce enough cortisol to handle it. Adrenal fatigue has been responsible for high-performing individuals “crashing” and becoming effectively bedridden for months or years, too fatigued to do anything. Not wishing to come down with adrenal fatigue, I have begun taking an adrenal support botanical supplement (“Restorative Formulations Adrenal Px LOPB”) and have also tried adrenal cortex extract (“Adrenal Stress End”).

Hydration

I have tried the Aquas formulas available from John Coleman in Australia. These homeopathic remedies are supposed to enhance cellular hydration. I have a problem with homeopathy. If an infinitely diluted amount is good for me, then not taking it all should even be better! Yet, John Coleman swears by the Aquas and he has recovered from PD, so there may be something to it.

Red wine

Geoffrey and Lucille Leader recommend elimination of alcohol from the diet. John Coleman, sensible man that he is, recommends 1 to 2 glasses of vintage red wine a day. I am on John’s side. Drinking fine red wine has been a passion of mine since the 1970s and one that I am loath to give up especially since I have a wine cellar containing approximately 2000 bottles! Of course a big part of the enjoyment of red wine is the bouquet. Reportedly, loss of the olfactory sense is a common complaint in people with PD and is liable to occur early in the progression of the disease. I noticed no such impairment (and can still guess in a blind tasting that a bottle of Bordeaux is a fine old Burgundy!). For now, I enjoy each bottle of fine wine as if it were my last. To me, joy = dopamine. Also, there must be some benefit from the resveratrol!

Constipation

As PD also affects the autonomous nervous system, constipation can be a severe problem. Since my diagnosis with PD I have had some problems in this regard especially when I travel over multiple time zones and upset my daily rhythms. Currently, I have it under control with the simple addition of one or two rehydrated prunes to my morning smoothie plus a level teaspoon of organic psyllium fibre. These seem to be enough to keep me regular.

Hedonism

I stayed strictly on my gluten-free and dairy-free diet for over a year, but recently had the opportunity to travel to France for a combination of business and pleasure. I temporarily abandoned my diet and indulged myself for a full week in French gastronomy, eating foie gras, croissants, baguettes, rich cheeses, and just about everything else that the French are famous for. The consequence was that I had not felt better in over three years! Now, I am not so strict about my diet and allow myself the occasional indulgence.

Chelation

In 2008, a urine test for heavy metals revealed excessive concentrations of lead and mercury and other metals such as manganese. I have been undergoing chelation off and on since then and currently receive one treatment per week from my ND Caleb Ng. The treatments involve a small IV of EDTA solution. For any benefits to be realized, numerous treatments are necessary. Heavy metal poisoning (especially manganese) has been implicated in PD and welders are one profession that is at higher risk for PD. Since I spent many years working closely with welders and breathing welding fumes, I have no doubt ingested my fair share of iron, manganese and other metals. Interestingly, a CT scan of my brain failed to reveal any abnormal concentration of manganese. Note: the claimed benefits of chelation for PD have yet to be established through rigorous clinical trials.

Brain therapies

This section covers a number of therapies that may be useful for maintaining mental functioning and postponing the dementia that may occur as PD progresses.

Positive attitude

It is difficult to remain positive when confronted with a disease of no known cause and inevitable progression, yet this is precisely what must be done. Depression is one of the predominant symptoms of PD. If necessary, it may be necessary to take an antidepressant. One that has been recommended to me is duloxetine.

Body-mind psychotherapy

For several years in the 1990s, I had training in Hakomi body-mind psychotherapy arising out of the deep desire to know myself. I still keep in touch with my teacher, Ron Kurtz http://hakomi.com/. I regularly see a therapist,Mahmud Nestman, a Sufi who is familiar with the methods of Hakomi. In our explorations one useful technique is called “taking over”. In one session I had Mahmud take over (literally, with his hand) a tightness I felt around my heart.

When he did so, I was able to go in deeper into my own unconscious and to gain some valuable insights as to why the tightness was there in the first place. I have invariably noticed that during our sessions my tremours at first become almost uncontrollable but then they disappear, leaving me in a most serene and quiet and still place. Stillness is priceless.

The science of happiness

For several years I was an active member of the Ken Keyes community based in Coos Bay, Oregon. Ken was the author of the “Handbook to Higher Consciousness,” “The Power of Unconditional Love,” and many other books. For a number of years, I taught “Living Love” workshops in the US, Canada, and New Zealand. These teachings have served me well, particularly now that I have the symptoms of PD. I take responsibility for my own feelings. Nothing or nobody has ever made me upset are unhappy: I do it to myself. This is good news as the only person I am capable of changing is myself.

Neurofeedback

I have had six sessions of neurofeedback, also referred to as biofeedback from Mike de Jong, a PhD psychologist. During the first session and EEG was done to determine those parts of my brain that had abnormal brainwave patterns. Mike determined that my dorsolateral prefrontal cortex was deficient in theta wave output. Subsequent sessions (one hour each) involved application of a single electrode at the position on my head corresponding to the dorsolateral prefrontal cortex. I was provided with headphones to listen to the sound of surf while my eyes were closed. Whenever my brain produced Theta waves I could hear the surf; when no theta waves were being produced all I heard was static. At first, I struggled to hear the surf, but later just let my brain do all the work of figuring it out. After six sessions, some progress is being made. If I didn’t think there was some benefit to this I wouldn’t continue. Typically, it takes 20 sessions to realize any permanent benefit, so I have some time to go.

Meditation/relaxation

For many years, I was an adept meditator and meditation was the most important part of my day. Since my diagnosis with PD, however, I have found it very difficult to get into a meditative state. Sitting cross-legged is agonizing. Instead of stillness, I have tremours. By re-casting meditation as relaxation, I can derive some of the benefits, primarily reduction in tremours and tension. I have found that electro-cranial stimulation (see below) is a good substitute for meditation.

Electrio-cranial stimulation

In electro-cranial stimulation, a small electric current is passed through electrodes attached to my earlobes that produces a mild tingling sensation. Sessions are either 20 minutes or 60 minutes and are very relaxing, almost to the point of putting me to sleep. Tremours also appear to take a nap.

Neurocognitive screening

In 2010, I participated in a neuropsychological screening evaluation at the Movement Disorders Clinic at the University of British Columbia. These tests revealed that my cognitive functioning was “broadly average to superior” depending on which test was being administered. I take this as a sign that I have experienced some cognitive impairment as I would have expected all the tests to result in a “superior” rating!

Defiance

If I had one final piece of advice for anyone who has been diagnosed with PD, it is to defy it. If it is a fight that Mr. Parkinson wants, it is a fight that he will get. The worst thing one can do is to deny it. As long as one remains in a state of denial, the PD will continue to progress. But as soon as you turn to face your tormentor and fight back, the PD will lose its grip over you. Mr. Parkinson may win in the long run but it will be a protracted fight and you will win many of the rounds. And, who knows, you may just beat him!

Afterward I hesitate to call this section “Conclusions” as my protocol is very much a work in progress, and the effectiveness of many of the measures has not yet been verified. I do not have time to wait for the development of a “cure” from conventional Western medicine. I will be dead long before any such treatment has passed through all the hoops and clinical trials necessary for its approval.

Currently, the treatment of last resort for PD is Deep Brain Stimulation (DBS) but it is only done when a PD patient is essentially incapacitated with an advanced form of the disease. How humiliating! For people with tremour-dominant PD the option is thalamic surgery, either in the form of thalamic DBS or thalamotomy. Canada’s medical system is unable to cope with the (growing) numbers of PD patients, so in the meantime I will do everything I can to prevent the progression of my PD to the point where surgery is even an option.

I am doing the best that I can to not be a burden on the medical system. What I am doing is also expensive. Canada’s medical system pays for my neurologist visits and little else. The PET scan, physiotherapy visits, naturopath visits, botanicals, and supplements are not covered. Yet if there was ever a time to start spending what I have saved, it is now. I would rather have quality of life than a fat bank account anyway. I’m currently working my way through my “bucket list” and having the time of my life.

Angela Wensley

My Old Energy Has Returned

I was diagnosed early stage PD last January and have been on Sinemet ever since. I wasn”t seeing any definitive response to the med which my doctor saw as troubling, suspecting that might mean I had Parkinson’s plus… a grimmer diagnosis that simple Parkinsons. We worked up to 7 pills per day, which is a lot to start off with.

I felt better but honestly I myself wasn”t 100% sure it was because of the meds, because by that time (now i was 6 months post dx) I had gone beyond the shock and initial depression I had experienced upon initial diagnosis and was heavily into alternative treatments… (acupuncture, Chinese herbs, massage, exercise, twice weekly yoga, rest, meditation, Reiki, etc). reading your book was extremely helpful and inspiring. Facing my own deeper negative thought patterns was critical… particularly the belief that i wasn”t really ever going to recover.

My old energy has returned. Although I am not symptom free I do feel better as I learn how to take charge of my health more and more every day. Slowly I have come to believe in my capacity to recover. what a journey!

2 months ago I started gradually reducing my daily Sinemet from the peak of 7 pills to now 3, ramping it down half a pill per week. I plan on continuing this as long as I feel well, intending to get off it altogether several more weeks from now. Obviously  I am pleased with this development,  and recognize there will likely be more hurdles to overcome as I go forward. the point is I am ready for the challenge.

Dan

Parkinsons Recovery Radio Interview with John Coleman

I received a copy of the e-mail below to John Coleman from Kumar which refers to my interview with John on my radio program which aired July 16, 2009.  If you visit Parkinsons Recovery Radio you can scroll back to my interview with John in July and listen. The programs are listed in the order they were aired.

Kumar has given me permission to  post his letter which was actually sent to John Coleman, ND. I love to post such letters – whether they are addressed to me or someone else –  because it is energizing and motivating to see what other people are doing to get wonderful relief from their symptoms.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Dear John Coleman, ND:

I just heard the interview with Dr. Rodgers and the questions and answers. It was fascinating. I was happy you gave so much importance to meditation. I have been meditating for the last two decades, praying to the Lord in the form of devotional singing and giving importance to spiritual exercises under capable Masters but yet I was diagnosed to be suffering from PD about three years back. However I have continued all these along with medications which is syndopa plus(Levodopa 100mg + carbidopa 25 mg) 1.5 tablets four times a day and the dopamine agonist Ropark 2 mg three times a day as prescribed by the neuro physician.

I am feeling quite fine. Tremors have reduced significantly. I can walk at a stretch for 30 min with both arms swinging and climb staircases without any support since this was the severe problem I suffered with last month since I was falling backwards while climbing staircases and also while moving horizontally at home and other places. Add to this hallucinations and uneasy feeling on the back of the head which are no longer there.

The present improved condition is due to two weeks of hospitalisation for drug optimisation, physiotherapy done both at home and the hospital for coordination, balancing, muscle strengthening involving cycling, rowing, weight lifting for both arms and lower limbs and exercise on the tread mill for slow walking with longer steps. Beside these I have also been doing exercises prescribed by Dr. Roberts from the Internet which are also helpful. I taught some of these exercises to the physios attending on me.

I am eagerly waiting for the Aquas hydration formula which has not arrived yet even after 24 days after ordering the same. In the mean while I am trying  my best to drink 8 glasses of water everyday.

I would like to share a simple technique here which we call evening cleaning. After the day’s work when we are relaxed, we seat ourselves in a comfortable seat erect and at a quiet place, take the thought once only in the beginning that all complexities, negativities, fears, darkness, grossness, disease and recently added toxins are leaving our body from behind in the form of smoke and sit quietly for 30 min using your will power but not meditating. You feel highly refreshed and empty after doing this.

I am in the process of writing my Life history in brief which I will send it to you after I have finished.

Once again, it was wonderful listening to you.

Kumar

Pain and Parkinson’s Disease

Question:

Although this topic may have come up before, we haven’t gotten yet a satisfactory answer.  The question is whether you have found pain to be a significant symptom in people with other symptoms of Parkinson’s disease, and if so, what they do to find relief.

The second question is whether in people who take L-dopa, it is common for them to feel worse 20-45 min after taking the medication before finding relief.  Any suggestions or information you have on these two related questions would be very much appreciated.

Response:

Pain:

Yes, I have received many reports from people who report pain is a very troubling symptom for them among others. First, from what I have learned, people get relief from pain by meditating. Meditation allows them to override all of the thinking that surrounds the “meaning” of the pain. We all put a head on top of our head, which makes the experience worse. That is one reason I have been motivated to record the weekly series of meditations.

Second, my observation is that there is typically a thought form that is buried beneath the pain. Once that is cleared and released, the pain resolves. I will be interviewing Deborah Russell on the radio program next month who will be explaining how quantum healing is useful in this regard.

Third, a source of the pain is often unreleased trauma. Using one body therapy or another (we use cranio-sacral) helps with releasing trauma. Other therapies are helpful as well. Once the trauma is released, the pain resolves (if trauma is the primary causal factor)

Fourth, I just interviewed Lee Bender this morning who has had a considerble challenge with pain over the years. It is interesting you just happened to write in today! Go to Lee’s website and you will see what he does to get relief from his pain. I will be airing his interview next month.

Timing of Medications

As for the timing of the medications – this  is a tough one. Most people tell me that when they work closely with their doctor, they can adjust their medications so that the down time is minimized. I wonder about the reason for the emergence of pain before the meditations kick in. Perhaps the body is in a suspended state of withdrawal until the  new dose starts to work. Perhaps there is a temporary flare up of inflammation.

I hope others have their own two cents to offer so we can shed some light on this particular challenge.

Parkinsons Recovery with EFT, Meditation and Symptom Tracker

Question:

Help me find the tracking page…I used it one month ago and wish to record improvements.

Your Five Steps to Recovery book and meditations are terrific.

“Recovery will happen for me” is my new mantra.”

My body is responding. Also, your suggestion for remembering the feeling from past times I made non wishy washy decisions and the outcome was neverseriously in doubt. At first I couldn’t recall such decisions. Then it came later that I had indeed made 4 of them, all life and death decisions basedon how I thought and moved in a very short time span.

In my experience as a helicopter pilot I had 4 engine failures over a 30 yr period. One from 500 feet with a student, one from 15 feet over a helipad,one at night, over a city from 500 feet, and the last over the ocean from 200 feet with 6 on board. Each one the feeling deep down was that I knew the end result would be successful. That same feeling is the same feeling I have about recovery. I also have been using the TV screen meditation with interesting, positive results.

I also have to give credit for 5 sessions of EFT with Bernadette Hunter. You can listen to the radio program with Monica and Bernadette (or download it) here.  It’s all coming together slowly for me. Soon my Aquas will be arriving…So please, I pray I can still use your site’s tracking of symptoms program. It’s difficult to refind…

Monica

Response:

This is certainly an exciting report for everyone to hear. Thank you for sending it me and giving permission for others to read it. There are clearly exciting developments happening in your life. When you are on the road to recovery, it becomes so clear great things are beginning to happen.

Energy is running. A new and powerful life force begins to re-emerge. Of course, the process is seldom smooth sailing, but at least you know something important is happening.

I developed symptom tracker as a way for anyone to track the progress of their recovery. You answer a set of 39 questions from a standard research instrument that is use in Parkinson’s research (the PDQ39) to get a baseline. That is what Monica has done. You then answer the questions every month or so to see how your recovery is unfolding. You can see evidence of your progress!

We all have a tendency to focus on symptoms that are troubling and do not celebrate improvement in symptoms that have resolved or become much better. Tracking symptoms with my Symptom Tracker is thus a way to celebrate your improvements and identify any areas that need extra attention.

You can always find a link to Symptom Tracker on the main page at www.parkinsonsrecovery.com. Just click on the icon and you will be taken to the log in page. It will always be anonymous and free. You first have to register by entering an e mail address (that is how the data can be tracked) and choosing a password.

Robert Rodgers, Ph.D.
Parkinsons Recovery
www.parkinsonsrecovery.com

My Year of Meats

We interview today Ruth Ozeki who is a filmmaker and writer, and the author of the internationally acclaimed novels “All Over Creation” and “My Year of Meats.” Her short fiction has appeared in a number of anthologies, and she is an occasional contributor to magazines and newspapers including the New York Times Op-Ed page.

She is a long time meditator and student of Zen Buddhism, and she is preparing to ordain as a priest with Zoketsu Norman Fischer, whose website, everyzen.org, she edits.

Her essay about taking care of her mother who had Alzheimer’s disease, entitled, “The Art of Losing: On Writing, Dying, & Mom,” written for Shambhala Sun Magazine, will be included in the anthology “Best
Buddhist Writing of 2009.”

EVENT:  My Year of Meats
DATE & TIME: Wednesday, June 10th at 10:00am Pacific
FORMAT: Simulcast! (Attend via Phone or Webcast — it’s your choice)
TO ATTEND THIS EVENT, CLICK THIS LINK NOW…
http://instantTeleseminar.com/?eventid=7814676

Robert Rodgers, Ph.D.
Parkinsons Recovery
www.parkinsonsrecovery.com

Learning to Live with a Chronic Disease

Florence Caplow is a conservation
botanist, Soto Zen priest, and writer.
For the last ten years her primary
practice has been learning to live –
with some kind of grace – with a
chronic and painful auto-immune
illness, diagnosed as Undifferentiated
Connective Tissue Disease.

The illness forced her to give up
full-time work. She has chosen to spend
several years without a home: in retreat,
in the mountains and deserts, and
wherever she’s called to be.

Florence talks about her interview with
Michael Sawyer, Zen priest with Parkinson’s,
who died in 2008. Michael told Florence that
the best years of his life were the last
five because of the joy he experienced
through his painting. Florence tells us Michael
was a true inspiration to everyone who knew
him. So is she.

EVENT: Learning to Live with a Chronic Disease
To hear the recording, click this link now …
http://instantTeleseminar.com/?eventid=7282578

Robert Rodgers, Ph.D.
Parkinsons Recovery
www.parkinsonsrecovery.com