Category Archives: medications

Medication Side Effects of Fear and Anger

I am suffering from Parkinson’s disease since 5 years. Presently I am taking Entacom Plus and Pacetane 3 times daily. But recently I observed that I am mentally disturbed. I am not able to work easily. I am not able to put myself stable. An unknown fear or angry is developing in me.

Kindly let me know the remedy

Rao

Response

By your description, it certainly sounds like you are experiencing the medication side effects in the form of fear and anger. People react differently to medications. Some people have no side effects and experience only the benefits of the medications. Others – and it appears you fall into this category of people – can experience debilitating side effects.

I wish I could report there is a simple remedy for this problem – perhaps a pill that would solve the problem. Alas, such simple solutions are not available. I am quite sure this is not the response you were hoping to hear, but it is the honest truth.

At a minimum you can read the list of side effects that you will find in the prescription inserts that your pharmacist will have. This would likely pinpoint the problem.
It is possible however that the problem you are experiencing is triggered by the particular combination of both medications taken together. That is to say, taking one medications may not be problematic for you, but when both are consumed, certain processes are triggered in your body that are creating the alarming fear and anger.

It is possible the problem may be solved by eliminating one or both medications or finding substitutes. Work with your doctor to explore alternatives. Keep in mind that with most
prescription medications, it is not advisable to stop taking them. The consequences can be disastrous. For most medications, you must reduce the dosage you take very slowly and very deliberately. Make these decisions in close consultation with your doctor.

I would also suggest that you approach the challenge you are facing from a new perspective. While the medications appear to be triggering anger and fear, everyone holds both
in their subconscious. We all have anger that is repressed and that is contained at the cellular level of our body. We all hold fear that we suppress as well.

A healthy approach is simply to acknowledge that everyone confronts the issues that you describe in your question. The only difference is that these issues – dealing with fear
and anger – are very difficult to manage and keep under control right now.

There are many powerful therapies you might explore that invite your body to release all of the repressed fear and anger that are making it difficult for you to function right now. Since I do not know where you live or what country you are from, I am not in a position to be specific here. I invite you to begin your own search for therapists you offer such services.
Approach your investigation by searching for people who work with the body rather than the mind. Such therapies will likely be much more helpful than talk therapists for the challenges that you describe in your question.

The solution lies deep within. The greatest gift you can give yourself is to acknowledge it will take time, clear intent and patience to resolve the challenges you currently confront.

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

Sinemet Titration

Lexie forwarded the progress report below and gave me permission to post it. Lexie is one of the 11 individuals who contributed to Pioneers of Recovery which was just released last week.
Robert Rodgers, Ph.D.
Parkinsons Recovery
Because of LDN, I have now titrated off of ALL of my ‘Sinemet – not even using that very occasional dose when I feel I might need it for a very long day, etc.  Now, when I have a foot tremor, I refuse to let my body go there and I just consciously “stop” the tremor and it is working! 

 

Wishing you and yours a beautiful Thanksgiving Holiday!  Thank you for all that you do to give people with PD hope that they can and will get well if “they choose to” and if they do the work that it takes.

 

Lexie 

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

Is There Any Hope After the Medicines Stop Working?

My friend’s husband is 53 and has been living with Parkinsons for 12 years.  The medicine does not seem to work anymore. He now shakes the whole day where as before it was only once the medicine wore of.  

Is there any treatment that he can go for that will help him to live a normal life again?

Have you had any feedback on stem cell replacement therapy?

Regards:

Annelie

Response:

You just happened to send in your question at the perfect time for a full and complete response. Yes – there are many, many therapeutic possibilities that your friend’s husband could find that would be helpful now that the medicines are have stopped working.

Most people are familiar with the approach used in the specialty of western medicine. Help offered by prescription medicines has been useful to your friend’s husband for over a decade, but is now no longer working for him. He can celebrate the many years of relief he obtained from the medicines he has taken thanks to western medicine. Some people discover that the prescription medicines are only helpful for 2-3 years at best.

Now what? The good news is that the treatments offered by western medicine in the form of medicines and surgeries are only one among dozens of other treatment options and approaches. Recovery really hinges on broadening the perspective on recovery options and being willing to consider other treatment modalities.

Western medicine has been in existence for about 100 years. Many of the other specialties that offer profound relief to persons with Parkinson’s have been around for thousands of years and and proved true to the test of time.

You are likely wondering why the timing if your question is so perfect? I just released the new edition of Pioneers of Recovery which reports to stories of 11 amazing individuals who reversed their own symptoms.

I posted clips on the Pioneers of Recovery website from my radio shows of the 11 pioneers. You might suggest to your friend that she encourage her husband to listen to all 11 clips.  Pioneers are inspiring thousands of people to hop onto the road to recovery.

Visit the following website to hear the clips that will inspire anyone who currently experiences the symptoms of Parkinson’s Disease:


http://www.pioneersofrecovery.com

Yes, stem cell therapy is one among many other options. I have posted a video here on the blog by Dr. Blanca Ramirez, Ph.D. who has had success using this therapy for people with Parkinson’s. Click on the “stem cell implants” category to the right of the page to bring up the video of her discussing stem cell therapy as an option. The video was posted on April 11, 2011.

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

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

Reducing the Dose of Medications

This discussion was filmed at the Parkinsons Recovery Summit in March, 2011. The discussion centers on issues people face who have decided to reduce the dosage of their Parknson’s medications and are taking no medications now. Compounding pharmacist Randy Mentzer offers an important insight into how compounding pharmacists help people reduce the dose of medications they currently take in close consultation with their doctors.

Robert Rodgers, Ph.D.
Road to Recovery from Parkinsons Disease
http://www.parkinsonsdisease.me

[flashvideo filename=videos/reducedose.flv image=videos/reducedose.jpg /]

If the videos you watch here start and stop, just pause the video for about 30 seconds and allow the live streaming to catch up.

MAO Inhibitors and 5-htp

Question:

Do you know anything about 5-HTP? it is 5-Hydroxytryptophan which is a precursor of serotonin. Friends with PD tell me it gives them more energy and I tried it and it did but then I did a little research and found it is very dangerous if you are taking MAO inhibitors.

What do you know?

Thanks

Darra

Response:

There are potentially serious side effects associated with MAO inhibitors that can be triggered by the addition of any supplement or certain foods. I would certainly be very cautious in any decisions that you make with regard to supplements and diet and would recommend that you consult closely and regularly with your physician.

I am not in a position to address the specifics of your question for several reasons. First and foremost is that any decision hinges on the full complement of drugs, supplements and food that you ingest. Such decisions can involve very complicated analysis interactions and drug depletions. You do not list them – so there is no beginning point.
Second, I am not qualified to provide such an analysis! These decisions involve extensive information about side effects and drug depletions. I suggest that you seek out a consultation with a nutritional counselor. We refer clients who have questions like yours to get consultations with Compounding Pharmacists Randy Mentzer here in Olympia, Washington. Randy offers long distance consultations for people currently experiencing the symptoms of Parkinson’s.

I can report that 5-HTP does not float to the top in the list of supplements that help people who currently experience Parkinson’s symptoms. If the issue turns on needing an energy boost, the best place to focus your attention is on nourishing the mitochondria (which occupy each cell and produce the ATP which gives us energy). Listen to my radio show with Randy Mentzer. One of the topics he covers in this show is how to reverse low cellular energy. Possible remedies include N-Ribose, CoQ10 and oxygen.

May your energy return quickly and effortless whatever choice you make

Robert Rodgers, Ph.D.
Parkinsons Recovery

Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery

Resources
Vibration Therapy
Dehydration Therapy: Aquas
Parkinsons Recovery Membership
Parkinsons Recovery Chat Room
Eye Drops for Cataracts
Symptom Tracker
Parkinson’s Disease News


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 Medications Are Not Working: What Do I Do Now?

Question:

I   have had Parkinson’s for about 4 years,     I am 72 years of age and up to now have had a bit of a struggle with the medication.  I could go into detail, but would it bore you?

I have not had a great deal of support from my Neurologist and in fact he reduced me to tears, so I wont see him, instead I rely totally on the Parkinson’s Nurse.  But, I feel i want aswers that I feel he wont be able to give me, as I expect the answer will be no, due to the NHS cut backs.

Such as, can I have a blood test to define my Parkinson’s and a scan to say how bad it is..and like how strong can one take the medapor before it is enough?  I was switched to Kalveto because the effect lasted longer.  It  did the first three weeks and then wham!  I became so stilff down my right side (this is the side which is more affected than the left side) abd agitated that I had to come off them.

Co-Benendopa 100/mg/25mg capsules and 50mg/12.5mg capsules are the tablets I am taking at the present time, but  they are wearing off before the 4 hours – so was changed over to Kalveto and then reversed after the effect it had on me.  I tried it again, the Kalveto, but again no good, so reverted to the Co-B tablets again.  But, they don’t last more than three hours now.

The second time with Kalveto decided to try and adjust the amount myself, but the second tim around with this drug it gave me the same difficulties, very stiff on my right side.   So have reverted to the first tablets.

My sleeping is approximately 3 hours a night only. And I have tried other tablets over the past four years.  But, this is where I am at at the moment.

I was wondering,should I be entitled to a blood test, or a scan or anything else to tell me how good or bad I am, and what can I do for myself.

I feel so useless, not knowing what to do next.

Can you give me any advice?

Yours sincerely,

Diana

Response:

First, person after person with Parkinsons on the road to recovery tell me it is extremely important to find health care practitioners that are trustworthy, professional and helpful. They need to be there for you. They need to be available to answer all of your question. If they are not, find someone else to be a member of your medical team.

Second, the general impression I get from reading your letter is that you have focused all of your attention and resources on prescription medications. It appears this plan is not working now, though it may have been helpful in the beginning. When a person begins to take more than one prescription medications, side effects and interactions can be very problematic. Where do you go from here?

I would recommend that you begin searching outside the option of taking prescription medications.  There is
certainly nothing wrong with this option but it is obviously not working for you.

There are a multitude of therapies – some thousands of years old – that people with Parkinsons say give them relief from their symptoms. Most therapies are natural, safe and offer the potential for improvement in your health on some level. I have  documented over 40 therapies in Road to Recovery that have helped people get well. There is a wide range of choices to consider from sound therapy to vibration therapy to herbal remedies to quantum healing to energy healing to biofeedback to Emotional Freedom Technique to …  The list goes on and on.

I would recommend that you find another health care provider – perhaps a naturopath or osteopath or an MD or a neurologist – who you can connect with. I also recommend that you listen to some of the Parkinsons Recovery radio shows that are archived. All downloads are free. You will find useful suggestions in virtually every show I have aired over the past two years. You can always listen to the radio shows live:

(http://www.blogtalkradio.com/parkinsons-recovery)

Call in with your questions. My guests are always happy to talk with people who call into the shows.

My guest this week is Sharry Edwards who is a national expert on using sound to heal chronic illness. My guest next week is Bobby who will talk about how he has become symptom free. My guests each week are amazing people who have incredible suggestions to offer.

There is no definitive test for Parkinson’s. MRI’s just rule out other causes. There is no blood test.  Instead of focusing on what is out of balance in your body – you might consider focusing on what is in balance. Be delightfully surprised to realize how many functions of the body are working well.

I am talking here about a transformation of thought forms. When we focus on what is wrong – we feed the illness with more energy. We give it food to digest. This makes the symptoms get worse. When we focus on what is right and strong – we get stronger inside and out.

The people who are recovering realize that they have to take responsibility for their own health. I believe in the end – when our bodies get out of balance – we have to take responsibility for ourselves.  In the end, we are really the only one who can figure out what is happening to us and how to heal it.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery

Resources
Vibration Therapy
Dehydration Therapy: Aquas
Parkinsons Recovery Membership
Parkinsons Recovery Chat Room
Eye Drops for Cataracts
Symptom Tracker
Parkinson’s Disease News

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

Medications for Tremors

Question:

Do you think that using the medications can make your symptoms worse?  I have been taking L/Dopa for 6 months now and just increased my dose in the last couple weeks and I have noticed more tremors in my legs.

Mandy

Response:

Unfortunately, taking medications is a two edged sword. Yes, they can provide relief from some of the symptoms – especially in the short run. And yes, all prescription medications have side effects.

If you list all of the side effects associated with the prescription medications that are available to treat Parkinson’s Disease you will actually see a list of the symptoms that are associated with Parkinson’s.

Some people experience few side effects. They find the medications provide them with welcome relief. Other people report that the side effects are worse than the symptoms they experienced before taking the medications.

As you know, I am not  a medical doctor. I am not qualified to diagnose what is happening to you. I can offer a simple observation. If you increase the dose of a medication and the symptoms are worse than before, your body is giving you a strong message.  For whatever reason, the medication(s) you are presently taking do not appear to be helping.

It could be a single medication. Or, it could be the side effects created from taking more than one medication.

There are herbs that people with Parkinson’s use to treat their tremors successfully.  Several of the people interviewed in Pioneers of Recovery offer some novel suggestions. There is also a website

(http://www.favabeans.parkinsonsrecovery.com)

which recounts that activities of Aunt Bean who has a farm in Tennessee where fava beans and Mucuna are grown. Aunt Bean makes a tincture from the tips of the fava beans. When she puts a drop of the tincture under her tongue she gets immediate relief from her tremors when they happen to surface.

Aunt Bean’s solution may or may not work for you. But I can assure you that there are a surprising number of alternatives you can consider if the treatment you are currently using is not helping.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery

Resources
Vibration Therapy
Dehydration Therapy: Aquas
Parkinsons Recovery Membership
Parkinsons Recovery Chat Room
Eye Drops for Cataracts
Symptom Tracker
Parkinson’s Disease News

Parkinson’s Medications and Recovery

Question:

Hi. I love your radio show and website.  They are so helpful.

I have been reading information on how to recover from Parkinson’s Disease and I came upon a article that indicated that once you are on the Parkinson’s medication you cannot recover from the disease…that you cannot go back so to speak. Do you believe this to be true?

Mandy

Response:

No I do not believe this is true. What do I believe?

Our thought forms determine our health and wellness. If you believe recovery is not possible for any reason – in your example because of the medications – recovery will not be possible. Period.  End of story.

If on the other hand, you believe that recovery is possible, the magic begins. You will quickly begin to feel better. Transform your moment to moment thoughts and the miracle of life will unfold before your eyes.

I wrote Five Steps to Recovery to help people transform the thought forms that no longer serve their best and highest good.  The steps help me moment to moment transform my own thoughts which do not serve my best and highest good.  The challenge of transformation is tricky because we have as many as 50,000 to 70,000 thoughts each day!

I say to you today – believe in your heart, mind and soul that recovery will happen. Then sit back and enjoy the ride to recovery.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery

Resources
Vibration Therapy
Dehydration Therapy: Aquas
Parkinsons Recovery Membership
Parkinsons Recovery Chat Room
Eye Drops for Cataracts
Symptom Tracker
Parkinson’s Disease News

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

Problems with Balance, Walking, Talking and Sweating

Question:

I have had Parkinson’s  since 2008. I am now taking amantrel-100 2 tab and pramipex-0.5 2 tab daily.

I still have a balance problem, a walking problem. Turning is also a problem – especially to the left, dryness in mouth, problem of pronunciation of some words while talking. excessive sweating at the left side of forehead is remarkable since 2005.  I also feel pain at neck below head backside of ears.

Kindly help,

Sibnarayan
India

Response:

You have a series of symptoms which is typical of people who are diagnosed with Parkinson’s Disease. It is likely that the cause is multi-faceted.

First, there is an Ayurvedic doctor in India, Dr. Paneri from Gujarat, who sees people with Parkinson’s exclusively and is getting remarkable results. His website is: http://www.drpaneri.com

Second, check the side effects of the drugs you are taking. It is likely some of the problems you are experiencing may be simply the side effects of the drugs. You may want to talk with your doctor about adjusting your medications.

Third, I suggest that you focus your attention on finding doctors and health care practitioners who can help you detox the toxins in your body, I am guessing that toxins are a primary cause of your symptoms. You may well have an abundance of heavy metals and pesticides that have accumulated in your body.Once they are removed your symptoms may well subside.

There are many ways to detox – just check around and find an approach that appeals to you. I have been using
zeolite personally with great success – but there are many other excellent methods that are effective as well.

You can get a wide variety of suggestions on detoxes from my new book which is described at: http://www.parkinsonsdisease.me

Know always that the body knows how to heal itself. We just have to give it a little extra loving kindness and attention sometimes.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Resources
Dehydration Therapy: Aquas
Parkinsons Recovery Membership
Parkinsons Eye Problems
Vibroacoustic Therapy
Jump Start to Wellness
Parkinsons Recovery Chat Room
Symptom Tracker

Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery
Meditations for Parkinsons

Parkinson’s Medication Dosage

First of all I am very grateful to read your wonderful work on the www.parkinsonsrecovery.com website. We feel there is hope & encouragement.

I have been diagnosed with PD 2&1/2 years ago & I followed the symptomatic Rx with sinemet to be able to continue working for 2 years but 6 months ago I had quit my job for obvious PD symptoms despite the conventional drugs.

Now my reflection is that if I were financially independent & had the possibility to choose, I would not have started the medications & promptly would have taken the holistic approach, at least as long as possible. The neurologists prescribe the medicines which do mask the symptoms in the beginning. This is not a criticism but this is what they are taught to do thinking there are no other alternatives to help. There are many alternatives
out there to heal.

The drugs are ADDICTIVE with side effects & we don’t feel completely fine on medication. Now while on Meds, I am following a program : diet, meditations (5 steps to recovery + books by Dr Coleman, Road to Recovery, Natural Therapies for PD Dr L. Mischley), exercises, Bowen, cranio-sacral, Tai chi etc. Of course the road to recovery is not a quick FIX. It needs perseverance, discipline & patience. Everything is possible.

I would be very happy to reduce my meds. In this path we are on our own with no help from the neurologist. I tried a couple of times gradually with uncomfortable reactions from my body. I will try again when ready.

My questions:

1st question:

I know you are not a physician but we want to hear from patients with the same experience Or have you interviewed patients who have reduced their meds successfully to recovery.We want to learn from these experiences.

Response:

I post e mails from people here on the Parkinsons Recovery Blog who report success with reducing medications. Check in with the blog periodically to get their stories. I also document cases in Pioneers of Recovery. Many of  my guests on the radio show have also been successful in reducing their medications.

You encourage me to compile every one’s story into a book. You would see that people use different approaches to reduce their medications. As you point out, there are many excellent alternatives which can be considered. Some will succeed for you and others will not.

2nd question:

While working on the road to recovery we would be grateful TO RELIEVE the symptoms.

I am always on the look out for new suggestions in your radio program.What do you think about LOW DOSE NALTREXONE which is a drug approved & used for addiction? Sinemet is ADDICTIVE.This would be a useful adjunct for PD patients to reduce & even stop their meds. I know again you are not a physician but you worked in research as PHD you may have an opinion.

Thank you for your dedication & I wish you all the blessings & success in your mission.

Abi

Response:

As you correctly point out, I am certainly not qualified to say one way or another whether this particular drug therapy would be a good choice for you. I would proceed just as you are – ask around – get some opinions – then   use your own intution to decide whether taking this drug would be a smart decision for you or not.

Drugs have literally saved people’s lives, so we must all be thankful that they exist. The downside to taking any prescription drug is that there are always side effects. That is why the FDA is involved.

You may well achieve your goal (which in your case is to reduce the medications you are currently taking) but other unwanted side effects may emerge (or not). You never know since every one’s reactions to drugs differs.

As with any drug the list of possible side effects for the drug you are considering is extensive. Possibilities that have been reported for the drug you are considering include disturbed sleep, unsettling dreams, fatigue, spasms, pain, headache, diarrhea and an increase of liver enzymes. If you decide to pursue this as a therapy you may experience none of these possible side effects. Or, you may experience several of them.

At Jump Start to Wellness, we teach a valuable skill that you can always use to make decisions like this one. You can always evaluate whether any therapy is a good idea or not for you through muscle testing and checking in with your own intuitive sense of what is the right decision to make.

You actually know the answer to your own question. When you sort out how the option feels, you will know the right decision to make.

Robert Rodgers, Ph.D.
Parkinsons Recovery
1-877-526-4646

Resources
Dehydration Therapy: Aquas
Parkinsons Recovery Membership
Parkinsons Eye Problems
Vibroacoustic Therapy
Jump Start to Wellness
Parkinsons Recovery Chat Room
Symptom Tracker

Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery
Meditations for Parkinsons

Recovery from Parkinson’s Disease

Hi Robert,

I have been continuing to follow your work and today I just felt compelled to write and convey my deep appreciation for you. Your work is invaluable and the information you provide is the most probative for anyone interested in recovery from Parkinson’s and other forms of chronic illness. I know that I have already indicated my appreciation in times past but I felt the need to do so again.

Robert, before I was diagnosed I was a mess, my hands, legs, head and entire body would shake. I have never been fond of doctors and always felt it would somehow subside, I finally went to see my general physician who said I had some sort of advanced PD, he recommended me to a neurologist who told me the same. Not wanting to accept this PD business I just continued to ignore it, then one day I was with my children at the mall and fell down a long flight of steps and unable to get up.

Still resistant I did agree to talk with Abraham Lieberman and he and I wrote back and forth for a long time, he agreed to treat me at no cost but I would of course have to get to Miami, instead he procured an appointment with Dr. Jankovic at Baylor University. They examined me for 4 hours and the diagnoses was the same. I started the medications that improved my condition substantially.

The long and short of it is I no longer have any symptoms of PD nor do I take any meds. This was the result of about three years of research and slowly making changes in all aspects of my life. I do have a good understanding of why and how I recovered however articulated this might not be so easy, it was not simply changing modalities but the capacity to perceive life and my existence in a way that is contrary to all I have been taught and conditioned, changing my perspective was not an easy feat but when that occurred I realized that healing and restoration was possible.

Bobby

Wean Off Medications

Question:

Lately, I have been contemplating the weaning of myself from my PD medications. Presently I take 100 mg of Levodopa Carbidopa 4 times daily and I take  Requip for  restless leg syndrome, five times daily.(The Levodopa is a fairly low dosage.)  I am also on  Azilect 1 mg 1x daily. This is the highly touted drug that is supposed to slow down PD.

Motivating me first and foremost to stop my meds, is that I do not like putting chemicals into my body and I have been taking Lev/Carb  for 12 years now. Secondly I have read that if you keep supplying your body with pill form dopamine, it relies on that, and it will not try to make dopamine on its own.

In the future, I would like to try and free my body of pill form chemicals, and  put my body back to work for itself. I know that this would have to be done gradually and carefully and working with a doctor under his/her  guidance. And it would involve lots of  work on my part. And I do remind myself  too, that it could be risky–and at this moment I am fending off symptoms quite well.

My neurologist he cautions me  saying that I am doing so well, why change anything? He says that first of all PD patients like myself, whose symptoms start with a tremor, tend to fare better than others. (And I am thankful for that). But mostly he stresses that MY MEDS are the biggest contributing factor for my  ‘wellness’, and that THEY are what is making the difference for me. So, no encouragement from him whatsoever.

I just wondered if,  in your work, with PD, Roger, have you ever encountered or heard of anyone else who has set out on a similar  journey : without meds and using alternative therapies, and whether they have been successful, or  not.  If so I would be interested in hearing their stories. And do you or your colleagues have any comments?

Thanx

Ms X

Response:

Your vision is clear about what you want to see happen with your medications. You have precisely what you need to manifest your heart’s desire: a clear vision, solid focus and unwavering determination. There will always be people who question your decision. This happens with any change you have decided to initiate.

You ask if there are any other people who have pursued a similar path. I know of many people on a path of reducing meditations and/or alternating their program in one way or another. Keep listening to my radio program! You will hear stories of people who are weaning themselves off medications that are no longer serving their best and highest good.

Please listen to my radio program interview with Pharmacist Randy Mentzer who gives a play by play description of how he helps people wean off of medications. http://www.blogtalkradio.com/parkinsons-recovery. The challenge of course is that side effects of certain medications can begin to be far worse than the symptoms the medications are formulated to help.

Randy tells me if a person is taking three medications, there is a good chance there are drug interactions and drug depletions. If a person is taking five, he says there is a 100% chance of drug interactions and/or depletions.

It takes a serious commitment on your part. And as you aptly point out, you have to work very closely with a doctor who supports your decision to wean off  medications. It is also important to acknowledge the role that supplements have in whatever decisions you make and whatever approach you pursue.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Resources
Dehydration Therapy: Aquas
Parkinsons Recovery Membership
Parkinsons Eye Problems
Vibroacoustic Therapy
Jump Start to Wellness
Parkinsons Recovery Radio CDs
Parkinsons Recovery Chat Room
Symptom Tracker
Parkinsons Recovery Radio Network
Daily News about Parkinson’s Disease

Books
Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery
Meditations for Parkinsons

Medications for Parkinson’s Disease

I am airing Compounding Pharmacist Randy Mentzer’s answers to questions you have submitted to me regarding Parkinson’s medications on my radio program Thursday (March 11th) at 11:00 am pacific time.  I have already heard the answers.

Everyone needs to hear this program. What you learn from his answers could save your life. Literally!

http://www.blogtalkradio.com/parkinsons-recovery

Robert Rodgers, Ph.D.
Parkinsons Recovery

Resources

Reverse Cataracts Naturally
Vibroacoustic Therapy
Jump Start to Wellness
Parkinsons Recovery Weekly Reader
Parkinsons Recovery Chat Room
Symptom Tracker
Parkinsons Recovery Radio Network
Aqua Hydration Formulas

Books

Road to Recovery from Parkinsons Disease
Pioneers of Recovery
Five Steps to Recovery
Meditations for Parkinsons

Recovery is Happening for Me

I received permission from Monica to posted her e mail to me yesterday:
I, LIKE YOU, HAD NEVER BEEN ENOUGH FOR MYSELF.  MY BODY EXPRESSED THIS AT AGE 50 WITH SPECIFIC SYMPTOMS.  DEEP INSIDE I WAS SO TIRED OF BEING DRIVEN AND WHEN DIAGNOSED WAS RELIEVED TO HAVE  AN EXCUSE TO GET OFF THE MERRY-GO-ROUND. AFTER    5 YRS I AM HAPPY TO BE A MORE REAL ME.  IN MAY 09 I DECLARED MYSELF TO RECOVERY.  IN JULY 09 I BEGAN AQUAS.

IN OCT 09 I SHARED WITH JOHN COLEMAN MY PROGRESS AND TOOK EVEN MORE SERIOUSLY THE PRACTICE OF SELF-LOVE.  IM SEEING TEENY TINY IMPROVEMENTS THAT I ATTRIBUTE TO CHANGED THOUGHT FORMS.  ABOUT A MONTH AGO I MADE AN APPT TO SEE ABOUT STARTING PD MEDS IN DEC.  WHY?  BECAUSE MY RIGHT FOOT WAS STICKING TO THE GROUND A LITTLE MORE THAN  I WAS COMFORTABLE WITH.  I DECIDED TO BE IN A FEAR STATE OVER THIS INSTEAD OF THE IDEA THAT THIS TOO SHALL PASS.  IT PASSED.  IM IMPROVED SIGNIFICANTLY. IM STILL GOING TO SEE ABOUT MEDS….ALTHOUGH TAKING DOPAMINE CAPSULES HAS HELPED ME I THINK.

I THINK HAVING A MORE RELAXED FORGIVING OF SYMPTOM FLAREUPS IS THE KEY THOUGH.  THE OLD FEAR-BASED, DRIVEN, IM NOT ENOUGH EGO, IM REALIZING MAKES SYMPTOMS WORSE THAN THEY WOULD BE OTHERWISE.  OLD HABITS DONT SERVE ME AT ALL…
YOUR SELF INTERVIEW HAD A PROFOUND EFFECT ON MY WAY OF THINKING AND  I THANK YOU DEEPLY.

MONICA
When Monica sent me an e mail today giving permission to post her e mail, she added the following exciting news:
TODAY IS ANOTHER GREAT DAY AND IM SSOO HAPPY……IM ON A HIGH..RECOVERY IS HAPPENING FOR ME
Monica

Robert Rodgers, Ph.D.
Parkinsons Recovery

Resources

Jump Start to Wellness
Parkinsons Recovery Weekly Reader
Parkinsons Recovery Chat RoomSymptom Tracker
Parkinsons Recovery Radio Network
Aqua Hydration Formulas

Books

Pioneers of Recovery
Five Steps to Recovery
Meditations for Parkinsons
Stop Parkin’ and Start Livin’