Category Archives: diagnosis

Is My Dopamine System Becoming More Stable?

I was just diagnosed with Parkinson’s disease and would like to know the following: How can I tell if my dopamine system is becoming more stable? I am taking L Dopa (natural). It is made from the dopa bean.

My motivation level is ssoo low and the fatigue keeps me from being positive – but I am on the the road to recovery with my best cheer leader (God).

Thanks for all your wisdom

Margie

Response:

I am sure you are eagerly awaiting an answer to your very specific question. The technical answer is that even if your dopamine levels are “stable” you may still feel lousy. “Stable” may convert to a level that is so depleted that your body engine is running on very little oil.

The analogy I would like to suggest is to equate dopamine with oil in a car and your energy with gas in a car. I admit this is a crude analogy, but it helps me make the point I want to make here. You report that you have very low motivation and high fatigue. It was probably even a challenge to write in this question today.

The translation I would like to make is that you are running low on gas. Your tank is almost empty. Now as we all know, once the gas tank in a car is empty the car stops. The same outcome holds true for the body.

Our cells need fuel to function. I would speculate that you are probably not giving your body the fuel it needs to rejuvenate and revitalize itself. I am in the process of writing up the next Parkinsons Recovery newsletter which will address the issue of giving our body the
fuel that it needs to function  and reverse the symptoms you describe in your question. Be sure to sign up for the free newsletter so you can catch that email. I am not quite done with the writing,  so please be patient.

I recommend that you begin thinking about your current health challenge in a different way. Dopamine is  one of 40 different hormones in the body.  If is a formidable challenge to maintain the delicate balance that is needed across all 40 hormones. Only the body knows how to manage this incredibly complicated task.

I assure you that your body is not focusing its attention exclusively on dopamine. It has three or so other dozen hormones to monitor. Why not just step back and realize that your body needs a little extra support in the form of nutrients to do the work it well knows how to do?

Your body really does know how to heal itself. All you need to do is to trust that your body is qualified to do the job that is needed as long as it has the  fuel (the gas) that is required to fire up your energy and jump start your journey on the road to recovery.

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

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

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Multple Systems Atrophy (MSA)

Question:

What do know about Multiple Systems Atrophy MSA , which  is related  to Parkinson’s?

Oresia

Response:

I have worked with several people who have MSA so I have a reasonable idea of the symptoms that are involved.

All in all, however, I must report that I do not find labels such as are given by diagnoses to be helpful or useful for recovery. They tend to be associated with negative thought forms and give energy to the symptoms which just feeds them.  I make this case in my recent book, Road to Recovery from Parkinsons Disease (www.parkinsonsdisease.me)

So, I personally never wrap labels around diagnoses. That is why I always refer to “the symptoms of Parkinson’s” rather than some amorphous concept of what other people refer to as Parkinson’s Disease.

Naturopath doctor Laurie Mischley agrees with me. She was my guest on my radio show today. She makes the same argument during the interview and in her new book, Natural Therapies for Parkinson’s Disease.

Symptoms are simply signals that something is out of balance which merits our attention – nothing more and nothing less. When we feed the symptoms with worry and fret, they can certainly become problematic.

The important question turns on what is feeding the symptoms in the first place.

Robert Rodgers, Ph.D.
Parkinsons Recovery

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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

Toe Curling and Early Diagnosis of Parkinson’s

On my radio show today I interview 83 year young Lee Bender who confronted a debilitating problem with curled toes in his right foot.  Lee discovered a solution to his problem from a most unexpected source which he talks about during my interview with him today.

You are probably expecting me to tell you the solution which took 15 minutes.  Part of me wants to cave, but I won’t. It is worth taking 45 minutes to listen to the entire show.  I am on live at 11:00 am pacific time today (March 4th). You can always listen to the show later by downloading the recording. Click on the radio program link at the top of the blog (on the ride side panel) or visit by clicking the link below:

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

I sent out an e mail announcement to my list about the radio show today and in response received a fascinating e-mail  from Brad who speculates that toe curling is a reliable predictor (and early sign) of Parkinson’s.

I just discovered that “toe curling” or “kinesigenic foot distonia” is a “hallmark” of early-onset Parkinson’s, often appearing long before tremors or other obvious symptoms.  Distonia is different from regular cramps.  I had this symptom for two or three years before diagnosis (at age 52).

What is really unbelievable is that (western) doctors, even neurologists, either can’t or won’t tell you this.  They either ignore or misdiagnose this unique symptom.  You have to display at least three classic PD symptoms to get a diagnosis of PD.  By then you know something is wrong and from a western medicine perspective it makes no difference when you receive diagnosis and treatment (since there is no hope for improvement anyway).

What effect might  three years of detox and/or lifestyle changes and alternative therapies in early intervention have on the later progression (or remission) of PD?  Ten to fifteen percent of these PD related distonias resolve spontaneously (for unknown reasons).  Of course, PD never resolves (by definition).  If it does, it is declared a misdiagnosis or “psychogenic” (you never really had PD).  This does not really help discover early indicators of PD.  Any strange or unusal sensations in the body should be taken seriously as a sign that something is out of balance.

Brad

Incidentally, if you want to sign up for the few newsletter, you can do so by entering you e mail address in the field at the top of this blog (on the right side panel). I hope you can join us for the show today.

Robert Rodgers, Ph.D.
Parkinsons Recovery

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Dad in the Hospital with Low Blood Pressure and Parkinson’s

The following questions were sent by Nancy:

Question:

Saw your interesting article on the internet last night. My Dad was diagnosed with Parkinson’s about 10 years ago. He has been on the required medication, such as Levadopa and Requip, maybe some others. My most concern is the Requip.

He has been the hospital all week because of his low blood pressure. For some reason they don’t know what to do about it. I have been  told that the requip  causes low blood pressure. Can he safely get off of the stuff? And how?

Response:

Once a person starts taking medication, it is very tricky to stop. The body goes into a type of withdrawal. It is important to work closely with the doctors if the intent is to stop taking any Parkinson’s meditations (or reduce the dosage). It is not a smart idea to go cold turkey on the medications.

Question:

How can you tell if someone has been misdiagnosed with Parkinson’s?

Response:

Parkinson’s is a garbage can type diagnosis which means it covers a wide range of symptoms. Research estimates show that about one third of the people who have been diagnosed with Parkinson’s were misdiagnosed. This happens because there is no definitive test for it. Most doctors eliminate other possibilities – and if nothing is left – it is diagnosed as “Parkinson’s”.

Question:

Has all this medication put him in the condition he is in?

Response:

You can partially answer your own question by asking your pharmacist for the list of side effects from the medications he takes. If the symptoms he is experiencing are on the list, there is certainly a good possibility interactions of the medications might be the culprit.

There is also another problem that emerges when more than one medication is taken: drug interactions and depletions. Additional problems are caused sometimes when certain medications are combined. I refer people to Randy Mentzer who is a nutritional counselor and compounding pharmacist.

Randy does a full analysis of everything a person puts into their body, consults with the patients and writes up a detailed report of recommendations. He can sometimes make a natural medications that can substitute for the medication the person may be taking that is causing the problem.

Most medication doctors are not trained to do such an analysis. I might add it takes someone like Randy years and years to learn what these medications do and how they interact, It is a specialty in itself.

Question:

I see Parkinson’s patients and say to myself,

“My Dad does not act like that.”

Response:

How interesting, I always encourage people to trust their own intuition. It may be that it is time to entertain other possibilities.

Question:

Can a person safely get off of the medication to see if he really needs it at all?

Response:

As I mentioned above, weaning off of medications is a tricky business. You have to work very closely with your doctors and reduce the dosages very slowly and cautiously.

Question:

Just would like your opinion be and what can I do for him?

Response:

I am not a medical doctor, so I can only offer my “opinion” if this were my Dad. To be clear, I am not suggesting you do these things! This is only what I would do if this were my Dad.

First, I would do everything in my power to get my Dad out of the hospital with the doctors’ blessings. There are many bacteria floating around hospitals these days, so people can get sicker sometimes because of exposure to new infections.

Second, I would get a consultation with Nutritional Counselor and Compounding Pharmacist Randy Mentzer for my Dad.

Third, I would order a bioenergetic assessment from Dr. Ivy Faber (which would likely point to possible causes of the symptoms).  There is more information about bioenergetic assessments on the Parkinsons Recovery website (www.parkinsonsrecovery.com).

Fourth, I would get a consultation with a naturopathic doctor.

Fifth, I would do everything possible to make sure my Dad was eating live foods.

Sixth, I would do something for my self as his son, so I could have some distance from the urgency of the problem at hand. If I am in fear as his son, it will do him no good whatsoever.

All of the above steps make it possible to approach the crisis in different ways, to step outside the box so to say. I am confident your current doctors are doing everything possible to help your Dad out, but specialists look at problems from the perspective of their own specialty. That is what they are trained to do!

If I were in your shoes,

  • I would begin thinking about the problem from different perspectives.
  • I would involve other health care practitioners in addition to the neurologists.
  • I would remind myself that the body always knows how to heal itself.

Give the body what it needs to come back into balance and your Dad’s body will take care of the rest.

Robert Rodgers, Ph.D.
Parkinsons Recovery

Resources

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Stop Parkin’ and Start Livin’

Reflexology and Parkinson’s Disease

A Letter from Neita:

Just started reading all your positive newsletters. Been diagnosed nearly a year, having tremors for 4 or 5 years in my hands. Had been exercising in a gym on treadmill and weight machines for 15 years and taking lots of more than minimum daily requirement vitamins.

I am 72, female, a good bit overweight but found myself slowing down. In November I had a big operation, went home and had to go back to hospital with infection coming from all my stitches in 3 days. Hospital and doctors had given me the big infection in my innards. Had a really hard time for 4 months.

Then, my psychiatrist, who had me on an antiphyscotic meds and was backing me off them because we thought it was causing the tremors, decided it wasn’t the meds so sent me to a neurologist when I had not exercised for 4 months and was still weak and just barely starting exercise again. So, the Parkinsons showed itself. Dr. said I do not blink my eyes as much as a NORMAL person, or have as  much facial expression as a NORMAL person. Oh My God, I am not normal anymore, how can I live??Joke,joke! Started taking Azilect right away.  Really don’t have any idea how well that is helping as of a month or 2 later.

I heard of a reflexologist in my neighborhood, who had learned it well to help his MS wife 15 years ago.  His first treatment was 2 hours.  With my first treatment, he gave me my life back.  My joints opened up like someone unscrewed them. I could really move my legs again on the treadmill.  Also, I got my personality back and could laugh and some things were funny now. I could think faster and to make matters not so good, my mouth started running again non-stop and I was awake when I got up in the morning first thing. I had come alive again.

Reflexology does a lympth drain and works on all the endrocrine glands. I did not know what all that meant until I had a lot of people coming to my home last month and I snapped that I had no DREAD about all I had to do so I snapped that reflexology, in giving me my life back, had dumped DEPRESSION, which I had not realized I had, probably because of all my exercise and it was lowgrade.

I have also found 3 really good hypnosis cd’s  that make me feel great after the wonderful deep relaxation  for the mind and muscles, and spine and nerves and having the juices flow in the proper amounts from all the right glands.  My chiropractor has a new machine called the Pro Adjuster which does great work, not like him just bending your body all around, which never worked for my back for years. I go there twice a month, all Medicare will allow, but maybe can get one more since the Parkinsons diagnosis.

I go to the reflexologist every 3 weeks, because I found out that if I wait 4 weeks, the tremors start a little bit again. Of course, I know that they will act up anyway if I get upset or excited!  I have already bought a few books about the first year, and optimal wellness, which with all the vitamin info and saying what exercise will do for PD, I realized why it did not show itself sooner for me.   Years ago, before lots of meds and info, my little Grandmother had Pd really bad.  My dr says with me starting it so late in years, I won’t ever be as bad as she was.

Dr. also warned me about all those places on the internet who want you to buy stuff.  Well, I may not buy all your stuff,unless you have a good hypnosis cd to fight PD, but I love positive information to help.  I do not want info about herbs because it will not be good for  a chemical imbalance in the brain and I could have more bad  episodes now that I am off the drugs. Hopefully , that part of my brain has healed itself as I am doing great in that area. Thank God, now that I have something else big to deal with. Also, thank God, that I am a Pollyana and look for the good. Not in denial, but don’t want to borrow trouble before it comes either.

Thanks for reading this.  I am still 72 going on 55, as most people never guess anywhere close to my age.  My spine is still straight with wonderful posture and I have almost no wrinkles for an old lady (another joke, as I don’t feel it).  And I am married to a young thing. He is all of 69, so that has been my joke for 22 years.  Thanks again.

Neita

What I Learned About Myself Since Parkinson’s Disease Diagnosis

The following is an e mail from Terry I received permission to post.

In June 2008 I sought medical attention for the chronic fatigue and depression I was feeling after losing my job of 18 years, a close friend, my beloved cat and my apartment.  On September 17, 2008 a neurologist told me that I have Parkinson’s Disease.  This beginning of my PD journey, barring a cure, will last the rest of my life.  There’s always the optimistic hope that a cure will be found, but realistically, we will he fighting this thing for years to come.  Yes, we will continue to benefit from new treatments, drugs, perhaps surgery, gene therapy and results of all kinds of research.  But it’s not going to be over tomorrow.  So dealing with the emotional side of having PD is something I need to face.  I learned a lot about the condition itself and its various treatments, but some of the most important discoveries I made were not about PD itself.  Here are some of the things I learned about myself and others in my first 9 months of PD.

1.   Attitude is important.  Striving to maintain a positive attitude will affect my experience with Parkinson’s.  For sure, facing up to the consequences of PD and dealing with the issues it presents effectively will be the key to maintaining a positive attitude that is vitally important.

2.   PD is not my life.  I have PD and I am now realizing it is inevitably going to have a significant effect on my life, but I am working hard to not have it be the one focus of my life.  I am going to carry on doing things I enjoy and although these may be affected by my condition, I am working on a balance.  For as long as I am able, I will not let it be the one dominating thing in my life, as it was when I first was diagnosed.

3.   I am in this for the long haul.  At first I was in denial after the diagnosis then I was hungry for information wanting to know as much as possible about PD.  After a short period of time, reading everything I could on PD, I suffered from information overload and now pace myself a little better.

4.   I have to help others come to terms with my PD.  To me, telling family and friends about my diagnosis of PD has been the most difficult thing of all.  I was emotional and nervous at first knowing that the news would be a shock to them.  I find that most people know little about PD and you have to explain it.  I tell them “it is what Michael J. Fox and Mohammad Ali have”.  Their attitudes vary from genuine concern and support, to not knowing what to say and coming out with something like, “Oh, well, the treatments are very good these days,” and not really wanting to talk about it.  After my immediate family knew about it, it became easier for me to let a select few friends know.  Each person I tell, hearing my diagnosis of PD, for the first time is clearly quite difficult for some.  I find myself feeling sorry for them having to deal with the news and end up being supportive towards them when perhaps it ought to be the other way around.

5.   Some people never ask how I am.  Some do take the trouble to inquire, but I get the feeling that only some really want the true answer.  Perhaps those who don’t ask look at me and make their own assessment.  Some avoid  the subject finding it difficult to deal with the problems I’m encountering, maybe not knowing what to say.  Some ask my sister when they find it difficult to ask me.

6.   Unemployed.  In April 2008 I was fired from my job of 18 years, in one telephone conversation, by the owner of the company.  She told me some clients said that I did not look “happy” and the tone in my voice was not “friendly”.  She suggested that I look for another type of work that I truly would like.  This was a shock to me.  I asked her if I could take some time off because I felt it might be the tress of the soft economy that I was feeling.  She said no.  At this time I had no idea that I might be ill and my employer did not know either.  I went from being praised for years as a top sales producer and being told I was like “family”, to getting kicked to the curb in one unexpected telephone conversation.  What is upsetting to me is that she did not stand by me or try to provide guidance to meet the client’s needs.  This was a wakeup call for me leading me into an immediate depression.   At least it made me seek medical help which lead me down the road to my diagnosis of PD.

7.   Pride can get in the way.  Help is available but having been a self sufficient single working female possessing a certain pride in self reliance, requesting help can be difficult.  Family and friends are encouraging me to ask for help with some of the things I used to do but are now much more difficult.  For now I will still try to manage, but eventually there will be a time I will need help with daily living activities.

8.   Will receiving help knock my confidence?  When the time comes that I need help, will it make me feel less able?  Will it affect my confidence?  Will this change my attitude as someone who strives to achieve things, to someone who doesn’t push themselves at all?  These are thoughts I wrestle with.

9.   The one upside to having PD.  For me it is that I have met and made friends with a group of people whom I would have never met otherwise, and who have helped me see the way forward.  I hope I have helped a little as well.  It is the blitz mentality.  I suppose, comrades in adversity.  It makes the whole experience somewhat bearable to see others who are more seriously affected than me, continuing to live their lives and not feel sorry for them, and fighting their illness with dignity and inner strength.

10.  I know I am not alone.  There are doctors, nurses, therapists, researchers, my support group “Parkinson’s Resource Organization”, friends and family members all available to help.  And there are other people, just like me who are facing the challenge of PD, not by chance, but because the lottery that selected me, also came up with their number.  Somehow I think if we all put our heads together we can make the journey we face easier to cope with and we might have some fun along the way.

Terry

Parkinsons Disease Diagnosis and Treatment for Pain

The following correspondence was
received from Marne. I thought this
would surely be of interest to others.

My husband was diagnosed in 2006 with PD. 
We had MRI’s, CAT scans, Xrays of his whole
spine & shoulder. Found several herniated disks
in the cervical & lumbar areas & arthritis
in his shoulder. For 3 years the neurologists
said there wasn’t anything we could do. 

We just recently (3 weeks ago) went to a pain
specialist who said the shoulder & right arm,
hip & leg pain (all of the right side) is
probably due to the herniations.  He recommended
an epidural steroid in his cervical spine area
to relieve the pain. 

My husband did the procedure & during the
injection he felt his entire right arm get
really hot as the medicine went down & he
even felt it in his legs.  He walked out of
that office being able to raise his arm & use
it for the first time in 3 years. 

He has no more shooting pains in his arms, neck,
back, shoulder, hips & legs.  What the Dr. said
was that his spine was really inflamed.  His only
symptoms are now down to a very slight tremor in
his right arm & not having full strength of his
right leg.  This may or may not be permanent,
only time will tell.  But what I now know is
that inflammation of the spine can be a huge
cause of the pain. 

And unfortunately once a Dr. knows your diagnosis,
he throws every symptom into the Parkinson’s bucket
& doesn’t look outside of the box.  This treatment
has been amazing overnight.  Now he can do the
proper physical therapy so that we can get his
body working again.  And, with God’s blessing, have
the pain stay away permanently.

Thanks so much for your letter. It is proven over and
over that everybody’s situation is unique.  It is
amazing what can happen when you begin considering
different causes for the symptoms and what miracles can
happen with a little experimention.  

PS:  My husband has been on Glutathione @ 4000 mgs/
push IV, 1X or 2X a week for almost 2 years now & that has
helped tremendously. A good website is
www.Glutathioneexperts.com. 
Take a look at the video by David Perlmutter. 

Another site that we are using is www.PDRecovery.org. 
Her treatment is quite simple and my husband is experiencing
some very interesting changes in his body…more feeling. 
The treatment is simple & FREE.  She has a very interesting
book that is available Free online on her site.  It’s worth
a read.

Robert Rodgers, Ph.D.
Parkinsons Recovery

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