Archive for the 'Nutrition' Category

Sep 24 2011

Parkinsons Recovery Happens Day By Day: People Get Better

Parkinsons Recovery- People Get Better

I am a recently joined member from England. I am so excited about finding your web site and want to thank you from the bottom of my heart. There are no words to express my gratitude and excitement. I am really going to enjoy my recovery as it happens day by day. I have always had a little place inside me that says “I will figure this out”.  Now I have found the way with your help and I have regained my drive.  It is fantastic!

I have had definite symptoms for 12 years though I have been burdening  my mind and body with severe stress for years, mistakenly believing I could handle anything. Then the oak tree collapsed: I was totally exhausted and had no idea. I have been taking requip for 5 years and sinemet for 18 months and am determined to get free of them. I know I will though I don’t know details of the how yet. Don’t worry I shall be very careful and I have a lot of support. I have learned that relationships are even more important than health.

The things I am doing NOW are:

listening to your radio shows lots of exercise,  my dog gets 2 1hr walks per day in beautiful woodland exercise bike stretches and balancing listening to guided meditations really clean healthy diet lots and lots of water singing class nintendo wi writing out and reading poetry aloud eft feldenkrais recording my progress and activities and goals. my writing is loads better already hot and cold showering every day. The EFT Deft is HUGE for me.

I am not the person I was before my symptoms came along. The changes are quite staggering that actually I am a bit overwhelmed and confused. It has helped uncover something of the pay- off I get from having my symptoms – a mega breakthrough.

I found your site, actually the radio downloads on itunes 5 weeks ago and have improved so much already ( from really quite a bad place as the drugs were beginning not to work. They work well now. I have only stared eft in the last week

I was doing something of the above list before but now I have designed myself a programme which is a little bit strict and a little bit flexible. I have decided to stick to working with  this before I look at supplements and more complex things. I want to give my body some time on the basics  – good food, fresh air, mental stimulation, relaxation, fun etc. I have realized how sensitive I am at last. And I forgot to mention I have started detoxing  my environment – so far I have junked all my toiletries for natural ones, and only have about 1/8 what I had before! Now I am working through the cleaning stuff. It feels so good.

I am 55 years young, have a great husband who doesn’t give me too much sympathy and does his own thing, yet is fantastically caring and I have 2 fantastic sons aged  24 and  27. I have a brother who I would do anything for and a sister that I value  and love though I don’t have the same rapport with her.

I have just joined your membership pages today to continue my parkinsons recovery and it is great to get your emails. Encouragement is fab.

The crucial thing you have given me is the knowledge  PEOPLE GET BETTER. Now I know that I am on my way.

With heartfelt thanks

Fiona

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Jan 03 2011

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

2 responses so far

Dec 31 2010

Full Recovery from the Symptoms of Parkinson’s

Hi Robert,

You have been incredibly on point with regard to healing and recovery, although I am not one hundred percent sure how it is I recovered. I know that you have recently expressed the direction I went. I think the study of neurophysiology and quantum mechanics as it applies to neurology forced me to go back and re-learn the mathematics necessary to visualize quantum theory. Furthermore when I would go walking I would of course contemplate these principles. This is a little difficult to explain but it was like a light came on. This event was not sudden but involved significant time with daily study and contemplation although that is not what I intended.

In those days the talk of any sort of psychic change or shift in consciousness would have been met with laughter, however those concepts are steadily becoming more talked about especially from evolved teachers like yourself. Although not advised I quit taking all of my PD meds which included a lot of sentimet and mirapex. It was difficult for a few days and I was still shaky.

I applied a lot of other things that I had learned including detox, no refined foods, organic fruits and veg’s and a great deal of exercise. Then the symptoms dissipated completely.

Robert I think if there is an effective way to release our minds from the conditioned way of perceiving information or reality as we have learned it is much easier to experience more constructive thoughts. Our new found way of experiencing life is where healing and recovery reside because there is this all important element of belief that plays a vital role.

Bobby

One response so far

May 24 2010

Parkinsons Disease Progression

Below is a letter I received from Dirk who describes the exciting progress of recovery of his wife. Please take not that “progression” in this case – as with so many other stories I document here on the Parkinsons Recovery blog -  is toward recovery, not deterioration. Veronika is clearly on the road to recovery.

Robert Rodgers, Ph.D.
Parkinsons Recovery

.Dear Robert,

You are doing a great job. Compared to a year ago, Veronika is doing somewhat better. She has more energy, the lip curling disappeared, her arms are moving better when walking, so we are optimistic and believe that the turnaround – similar to Nathan Zakheim – is forthcoming but might be a year or two away. [Nathans' story of recovery is documented in Pioneers of Recovery].

Our diet is 70% raw and we bought recently a water ionizer (Kangen Water) that might also help with her osteoporosis.

She is now for one year on Dr. Paneri’s medicine. A friend of ours from Vancouver, who has also PD and is on Dr. Paneri’s medicine, confirmed that it is working. Last winter – because of a postal error – he was for one month without ajurvedic medicine and felt lousy and as soon he got new supplies his condition bettered. He went last summer over to India and spend a few weeks around Dr. Paneri. He told me that he met quite a few patients who were definitely on the road to recovery.

I am doing everything I can to help her and get her body in a condition to heal itself. But there are still some issues from her abusive childhood experiences that might be the root cause of her PD. Earlier this year we were listening in Puerto Vallarta to your interviews
[http://www.blogtalkradio.com/parkinsons-recovery] and I have to dig those ones out again, that were dealing with psychological damage.

It is too bad that – so far – we were not able to attend one of your seminars [Jump Start to Wellness]. But we will make it one of these days.

Thank you  again.

Cheers,

Dirk

No responses yet

May 19 2009

Parkinson’s Stem Cell Therapy

Published by under Nutrition,stem cell implants

Question:

I’ve been researching Fetal Cell Implants.  What is your position on this subject?

Response:

If we give the body the fuel (through food) that it needs, it can heal itself and replace whatever deficiencies are present in the body – whether stem cells or neurons or the cells that produce dopamine. The body can not manufacture the food that it needs to function itself, so our responsibility is to give our own bodies the fuel it needs to do its own work.

My belief is that external interventions in the long run usually undermine the body’s natural ability to heal. They can create an underlying imbalance among the body’s intricate systems that are all interrelated. We may be able to fix one issue in the body, but this will ultimately impact all of the other systems. The body has difficulty keeping balance when external forces take control over one or more of its functions.

I have planned to do an interview with a researcher working outside the box who is investigating how the body manufactures its own new stem cells.  This possibility is certainly exciting. I will place that interview higher up on the list so we can all learn more about this fascinating possibility.  I personally think the body is capable of doing anything.

Question:

Is there another source (book) that you would recommend that outlines overall diet (recommended foods, and foods to avoid) specifically for PD?

Response:

There are several wonderful sources that are fantastic for giving you the basic foundation of nutrition that is necessary to heal illness. You can get extensive information about Dorit’s recipes and her work on the Parkinsons Recovery Member web site. Her work is awesome.

There is also a very informative interview I did with her that is posted on the web site. By listening to my interview with her you hear some wonderful suggestions for people with the symptoms of Parkinson. I have received many rave reviews about that particular interview.

You can sign up until May 31st  to get free access to the member website at www.parkinsonsrecovery.org for 30 days. Hang around the member web site for 30 days. Take advantage of all Dorit’s recipes and information you will find on the website. Her books are listed there, along with recipes she recommends that are posted daily. You can experiment with a few of her dishes to see if her approach helps you feel better.

If you are taking certain medications, be aware that there are very specific dietary issues that can arise. For example, eating protein interferes with the efficacy of certain medications. Be sure to consult with your doctor or nutritional counselor about any possible confounds with medications you may take in conjunction with the dietary program you decide to adopt.

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

One response so far

Dec 01 2008

Constipation Treatments

Published by under constipation,Nutrition

Question:

You know, your writings simply amaze me.
I am suffering from my PD, but still
unmedicated. But it’s getting me down
quite seriously, and I need to find some
relief from what’s happening.

Your article on constipation was quite
interesting, especially since a good BM is
about the only thing that gives me a bit
of some sort of relief. I am constipated
nearly all the time now, and the stools
are definitely not dark brown, and they
are huge in size. My doctor has me on 4
Ultra Meg (2 in morning, 2 evening) but
they are not doing the job, so I take a
couple of ExLax too, and some coarse
Metamucial, finally getting a BM to occur.

My body is definitely suffering from a
nutrient deficiency. My muscles are atrophying.
It makes no difference if I try to build
them up or not. This atrophying has been
going on for years, way before PD tremors
started.

John

Response:

Constipation is certainly “in your face”
right now. Great! Your body is giving you
rich information about what it needs to
recover and move on to the next stage.

There is a quick, temporary fix which
involves taking generous doses of vitamin C.
This certainly works miracles for me with
this problem. I suggest that you do not
rely on vitamin C in pill form, but consider
the options of other delivery forms.
I take vitamin C in a concentrated powder
form.

Vitamin C is an anti-oxident, so taking
generous doses works miracles for other
reasons. Consult with a knowledgeable
nutritional counselor to make sure you do
not take too little or too much.

There is also a long term fix. Your body is
sending you strong signals that the food you
are eating is problematic. If the body likes
the food we give it, the food goes down easily
and comfortably. It also exits smoothly and
without complication or pain.

You may very well be allergic to some of the
food you eat. A smart place to look is to
consider the possibility that foods
you have eaten your entire life (perhaps
dairy or wheat or potatoes or who knows what)
are creating strong allergic reactions. Such
problems may not have been present at an earlier
age, but they inevitably intensify as we age. 

Out vitality and energy is derived from
live food, not from dead food. Most of
the packaged and processed foods found in a
typical grocery store has no life in it
whatsoever.

I am going to be bold in my following
assertion, but I know it is dead right
(like the pun?).

Begin ingesting live food every day.
You will get relief from constipation.
You will begin to feel better.

Oh, and this promise comes with a life time
guarantee!

How long does it take to begin feeling better
after you begin to eat live food? It could be
weeks or months, but I personally detect a marked
shift in my own energy a few hours after eating
live food. Instead of working 8 hours a day, I
am able to work 14 hours! Now that is a difference
that makes a difference.

How do you find fresh food in the winter time?
Try your local food coop. I purchase fresh
vegetables at the local food co-op and juice them
as often as possible. My rule is to purchase fresh
vegetables that have as many different colors as
possible. Some stores will also juice veggies for
you which is very convenient.

I will soon be launching the Parkinsons Recovery
member website which will post a new raw food
recipe every day. I will also have interviews with
authors who have written raw food cook books
and are knowledgeable about the importance of
eating live foods. I personally think it is
one of the foundations of recovery.  

Once you begin eating live food on a regular basis
you will not have to use any other aids to
relieve the constipation. The body can resolve
the problem of constipation, but you have
to give it a little help to heal. The solutions
will only have staying power if you make it a habit
to eat live food every day and stop eating foods
you are allergic to.

The muscle weakness may be related to a protein
deficiency. A consultation with a nutritional
counselor might be very helpful with your
present challenge.

May you be free of constipation agony soon and
feeling better and better every day.

Robert Rodgers, Ph.D.
Parkinsons Recovery

© 2008 Parkinsons Recovery

6 responses so far

Nov 19 2008

Parkinson’s Treatment Options and Parkinson’s Nutrition

Question (from Holland):

I use some times a week organic biological
soy sauce (tamari) and miso, a biological soy paste.
Can I trust this is MSG-free?

I read that nuts in the supermarket might contain MSG.
So biological nuts are MSG-free?

Response

In the United States, they have a term “organic”
which is supposed to mean no additives of any
kind. I am guessing the term “biological” means
the same thing in your country. It is probably
healthy and safe, but we never can be 100% certain!

The truth is that most products in supermarkets
have MSG of one form or another, so you really
never know for sure. The more often you can
purchase food from local suppliers, the more
you can be certain the foods are additive free. 

Another subject: Aquas: 

I use them now for ten days and I feel very good.
I take them together with noni-juice, in the evening
with other fruit-juice. I started with one drop, then
half a drop (threw half a glass water away), then
again one drop, after some days two drops, last few
days I try three drops. I feel emotionally very well
and optimistic, enjoy more of life.

Response:

Glad to hear the Aquas are helping. John Coleman,
ND, tells me that have been a big help to his
patients as well. 
 
Another subject: A Helpful Therapy that Contributes to
My well Being

I found a therapist that helps me to communicate
directly with my body. After a light head-neck-shoulder
massage she asks me to sit with my eyes closed
and concentrate on my body.

She asks what discomfort I feel, in what body part
it is located, and how long it is there. In a light
trance she guides me to the situation where the
discomfort started and encourages me to tell about
it and let it go.

Response:

This is truly fascinating. We all need to find
someone like this. Do they have a website? 

 
PS I was diagnosed PD in July 2007, I am free from
synthetic medicine. Still doing some professional work,
making long walks, go to fitness.

 Robert Rodgers, Ph.D.
Parkinsons Recovery

© 2008 Parkinsons Recovery

 

 

 

 

 

 

 

 

 

 

 

 

 

Response:

One response so far

Nov 11 2008

Parkinson’s and Nutrition – What is a Good Multi-Vitamin?

Published by under multi-vitamin,Nutrition

Question:

Just wanted to let you know how much I appreciate receiving your newsletter. My husband has PD and I seem to do more research all the time in learning how to help him do well. He presently take kaunch sand (he calls it that) along with 1 Sinement twice a day. This seems to keep him fairly well…not much shaking, but legs sometimes get weak (he rakes leaves, etc…overdoes at times). He has diabetes type 2 and is on meds for that…would love to get him off! But that might be too much for him to try! We thank God for His help and for you and the hope you offer through your newsletter. I have a CD of ‘Sit and be fit’ for PD sufferers. Hoping to get him started on those exercises.

I’m still looking for a multi-vitamin that is more specifically geared for those with PD. My husband can’t take any large pills or capsules, that is a problem.
 
   THANKS again for your positive and exceptional coverage on PD.

Betty

Response:

Thanks so much for your kind words. They are an inspiration.

I will be interviewing a series of naturopaths in Teleseminars over
the next several months. Be sure and ask your question about a good multi-vitamin to all of them.

You can write your question at the bottom of the pre-event announcement pages. You will likely hear different answers, but they will give you a good set of choices to consider.

One approach is to do testing which many naturopaths recommend. There are various forms of testing, but they all yield helpful information
about deficiencies in the body which inform specific supplements that
are needed. I have personally gone the testing route and it has been
very helpful.

There is another approach I think is worth considering. Begin placing an
emphasis on putting good food into the body every day. I personally do this in two ways. I juice live food as often as possible. And, I purchase canisters of Perfect Food from the Garden of Life. This is ground up food in powder form.

They also have “horse pills” which I can not swallow. I also have a terrible problem taking pills. With Perfect Food in powder form I put the powdered food in water and drink it – no pills are required. There are other excellent companies that offer good food in powder form. Perfect Food is just what I use. It was recommended by my naturopath. 

The idea is to begin giving the body the fuel what it needs every day to
function, maintain balance and sustain good health. Over time, most of
the vitamin and mineral deficiencies will be addressed.

Robert Rodgers, Ph.D.
Parkinsons Recovery

© 2008 Parkinsons Recovery

No responses yet

Oct 17 2008

Parkinson’s Nutrition

Published by under candida,Nutrition

Question

Have you ever heard of a connection between
candida and Parkinson’s?

Response

I am going to answer your question in two parts.
First, I have never seen any research that
considers candida as a factor that causes the
symptoms of Parkinson’s. I must also admit
that I have not done a search to make sure
this observation is correct, but I am almost
positive it is.
 
The next part of my answer addresses your
question: is there a connection? My answer is
unequivocally yes.

Candida obviously does not cause the
symptoms. Removing candida will not,
in my opinion, relieve all symptoms. But,
candida obstructs the natural process of
digestion. I do know that the more you
can get your digestive system back on
line, the more relief you will get from
your symptoms.
 
I am guessing this may be your body’s way of
telling you not to eat sugar. There are great
natural substitutes. Sugar is one of the most
deadly neurotoxins that exists. If you can stop
ingesting sugar, you will feel better.

Robert Rodgers, Ph.D.
Parkinsons Recovery

© 2008 Parkinsons Recovery

One response so far

Oct 15 2008

Parkinson’s Nutrition

Following is a short note I received yesterday
that certainly lifted my spirits. Be sure to
underscore the emphasis on good nutrition! 

“I love you folks. And I love getting your
positive newsletters everyday. I look forward
to them when I open my mail.” 

“I am working very hard to recover.  I have yet
to start the Aqua waters but I have changed
my nutritional habits, and making sure I am
taking good care of myself.” 

Pam

No responses yet

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