Archive for the 'Thoughts and Parkinsons' Category

Feb 18 2010

There is Nothing Wrong With You

Published by admin under Thoughts and Parkinsons

Below is a follow-up correspondence from Brad whose story appears on my blog yesterday:

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

I got “PD’ed” at church today.  I was a visitor and had no sooner entered than I was greeted by a young man with very obvious Down Syndrome.  He instantly spotted my shaking hand and said with a big smile,

“Don’t worry, you don’t have to be nervous, it’s only Ash Wednesday.  Or perhaps you’re very excited because you have such a beautiful wife!”

From his perspective there was absolutely nothing “wrong” with me; to the contrary everything was “right” with me.  My partner and I agreed that there was a profound lesson to be learned from this man’s innocent and perceptive observation.

Brad

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Feb 17 2010

Alternative Therapies for Parkinson’s Disease

What follows is a fascinating e mail I received from Brad who has given me permission to post it here.

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

I am still “in the closet”, so to speak, that is to say I have not publicly discussed my diagnosis.  I am very new to this discovery as I received my diagnosis one year ago (at age 52).  Sometimes I get “PD’ed” by strangers who notice my symptoms and ask (or tell) point blank that I “have Parkinson’s”, which I cannot evade.  The only purpose for taking the currently available meds is too hide the condition from others during, say, public speaking or other event which might lead to self-consiousness or embarrassment.  The meds serve no other purpose, they do not treat any underlying condition whatsoever.  I suspect this denial, or hiding from PD symptoms, is very psychologically damaging (Michael J. Fox treats this in depth in his books).  It leads to over medicating and adds stress, thereby worsening the condition.

In my case, I was lead to believe that the use of L-Dopa would provide dramatic relief and thereby confirm the diagnosis (remember that PD is a “negative” diagnosis, that is, it is indicated by ruling out all other possible explanations, however, in reality this is impossible to do.  So PD is labeled “idiopathic”, or of unknown causation).  Instead of relief, absolutely nothing happened, except that I immediately worsened and developed new symptoms in addition to a multitude of side effects.  My brain has resisted L-Dopa therapy over these twelve months.  L-Dopa is only sporadically effective and is very hard to predict.  It takes very high doses to alleviate all symptoms (breifly) and during periods of high stress (particularly social stress) it does not work at all.  So I have made a conscious decision to  minimize my use of L-Dopa and seek alternatives right from the start.  Sometimes I go for days without medicating at all and my symptoms usually stay about the same or sometimes better.

Things I am doing that seem to help:

Continue to ride and race bicycles.  I have had to give up certain types of racing that require extremely fine motor skills, but I ride with accomplished groups regularly, at least 5,000 miles per year.  Balancing a bicycle utilizes different neural circuits from your center of gravity than balancing on your feet, so I actually cycle better than I stand or walk.  Some medication is required to control dystonia and keep my “slow” leg in sync with my “fast” leg, but I have experienced symptom-free rides occasionally.

Continue serious weight training.  Since lifting weights does not involve high speed movements, it is largely unaffected by the symptoms.  I have always been very strong and have become even stronger with pd symptoms than I was previously.

All other forms of physical activity, such as stretching, hand and finger exercises, table tennis, hiking, walking, basketball, anything that involves motion.

Healthy food, water, and sleep/rest.  Avoid all trauma and toxins insofar as possible.  Drama-free social life, mental engagement and exercise, healthy spiritual practices.  These seem to be so “common sense” that they may be overlooked, but the proof is in disrupting any one of these and the symptoms immediately worsen.  Improve them, and they immediately get better.  Simple.

“Alternative therapies” that I am trying or considering include mercury detox.  This is very dangerous, because disturbing mercury in dental work and/or chelating mercury that has been bound to brain tissues for a long time can worsen matters by “stirring up” heavy metals that may then be reabsorbed or recirculated prior to elimination.  A personal decision has to be made balancing the risk/possible benefits of this approach.  It is too early to tell what impact this decision will have on me because I have only had mercury-free teeth for less than thirty days after more than thirty years.  I do believe eventually mercury will be banned in dental work.  There are better alternatives available.  My dentist conceded only after agreeing that having already developed pd symptoms, the levels of mercury that may be safe for a normal healthy adult might not be appropriate for me.

Hypnotherapy is showing great promise.  If nothing else, achieving relaxed states reduces stress.  However, even western medicine recognizes “psychogenic Parkinson’s”, from which full recovery is possible.  It distinguishes this from “real” or “organic” Parkinson’s which by definition precludes recovery.  So if you recover, it must have been psychogenic and vice-versa, if you don’t recover it’s not psychogenic.  This is circular reasoning.  Self-observation proves that all PD is at least partially psychogenic.  Besides, it is a Western assumption, wholly based on faith, that there is any real difference between the mind/spirit and body at all.  There is plenty of evidence, including in Western science, that there is no difference.  One cannot exist or be healthy without the other.  During hypnotic states (basically that relaxed dreamy state just before falling asleep), observable symptoms abate.  What more proof that these symptoms are controlled by mental states (or brain waves, if you will) is needed?

Long held attitudes and “belief systems” are hard to change but they clearly play a role in recovery.  There is a website with which you may be familiar, it’s www.pdrecoveryproject.org, I think, that discusses this in depth.  It’s chapter 45 of a lengthy treatise.  It’s basic theory is that negative self-hypnosis or “accidental” hypnosis is a causitive factor in PD symptoms.  At home, we avoid using the term “disease” or even “Parkinson’s”, instead referring to “Mr. P” or “my condition” or “symptoms” because one thing is for sure, if for one minute, you believe that you will not recover, your prophecy will be self-fulfilled.  On the other hand, if you believe improvement or recovery is possible (not guaranteed), then that will be true also.  Cancer victims refer to “fighting” cancer, PD’ers often talk about “accepting” PD.  While “accepting” oneself as one is or accepting the public acknowledgement of your symptoms may be helpful, the will to live (not mere survival, but living well) is the driving force behind recovery from any illness.

On the drawing board: acupuncture.  The brain is an electrical system.  Western science proves this through DBS.  DBS, however, is a crude and intrusive means of maintaining that system.  Again, the website mentioned above details how electrical disuptions in other parts of the body (particularly the foot or ankle) may affect the brain.  I had such a traumatic injury in which the tibia was fractured and did not “knit” after 99 days in a cast.  Subsequently, a “TENS” unit was utilized passing an electrical current, night and day, for several months through the fracture.  While this did cause an 80% “healing” of the bone to occur, there may have been electrical side effects unbeknownst to me from this therapy.

I realize that this is rather lengthy, but PD is a vastly complex and mysterious condition.  The mere lack of dopamine is neither it’s cause nor solution.  I agree with you that the current scientific research will never result in a “cure” because there are a multiplicity of causes and therefore a multiplicity of “cures”.

I appreciate this opportunity to share my thoughts in writing because it has helped me be a little more organized in my own research and thinking.  I do not yet know in what way my experience may be used to help others, but I will consider your idea.  Thank you for your time and the work that you are doing.

Brad

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Feb 03 2010

Positive People Positive Results for Parkinson’s

Published by admin under Thoughts and Parkinsons, healing

Below is an e mail I received from Rose with encouraging news of recovery from the symptoms of Parkinson’s from a “healing.”

YOU ARE SO RIGHT ON!  NEGATIVE THOUGHTS=INSTANT FAILURE!  BAH!  HUMBUG!


THERE IS THIS OTHER BOOK, CALLED “THE SECRET”..POSITIVE PEOPLE ATTRACT POSITIVE PEOPLE = SUCCESS…WORTH READIING.

I WENT TO MY HEALER FOR THE FIRST TIME HERE IN NASHVILLE. SHE WAS WONDERFUL.  WE FOCUSED ON SOME BAGGAGE I’VE BEN CARRYING….NOT THE PARKINSON’S DISEASE…AND WE IDENTIFIED SOME OF THE BIGGER PIECES AND I ‘GAVE’ THEM TO OTHERS AS IT WAS THERE:S TO HANDLE.

MY TALKING SPEED WAS VERY MUCH IMPROVED THE NEXT COUPLE OF DAYS!  I STILL HAVE A WAYS TO GO, BUT I AM EXCITED ABOUT THE RESULTS WITH JUST ONE SESSION AND WILL SEE HER AGAIN IN MARCH.
ROSE

P.S. The deal of a lifetime to join us on the Parkinsons Recovery cruise to Alaska expired February 12th. Meet other people on the road to recovery.  Take advantage of free Parkinsons Recovery workshops on the cruise.
http://www.parkinsonsdisease.me/alaska

Robert Rodgers, Ph.D.
Parkinsons Recovery

Resources

Cruise to Alaska
Jump Start to Wellness
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


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Jan 08 2010

Five Steps to Recovery

Published by admin under Thoughts and Parkinsons, recovery

Perhaps the most formidable challenge for everyone on the road to recovery is to persist, stay on track and maintain the commitment that is needed to recover. This I must say is no minor challenge. People
tell me consistently that when they take a vacation from eating healthy food, exercising or abandoning therapies that help them, their symptoms worsen. Guaranteed.

How does anyone maintain the focus that is needed to stay on track? It certainly helps to have a daily infusion of hope which is why I invented the member website and the Parkinsons Weekly Reader.

New Year’s resolutions can also certainly help us all sustain the discipline and commitment that is so critical to a recovery program.

My exciting announcement for the New Year is that I just released my book, Five Steps to Recovery, as a paperback. Road to Recovery from Parkinsons Disease was released Christmas. It has been an exciting
month for me and Parkinsons Recovery.

Until now, Five Steps to Recovery has only been available as a download (or desktop). I kept promising many of you that the print book would be available soon (but it has been six months). Five Steps to Recovery lays out the five steps  that are necessary to transform negative thought forms into positive ones. When we hold positive thoughts moment to moment, day in and day out, we can manifest whatever our heart desires – health, wellness,
abundance, happiness, joy – you name it.

You can find out more about Five Steps to Recovery and how to order the paperback by visiting:

http://www.fivestepstorecovery.com

Information on ordering Road to Recovery from Parkinsons Disease is here:

http://www.parkinsonsdisease.me

Robert Rodgers, Ph.D.
Parkinsons Recovery

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Nov 08 2009

Walking and Balance Problems

Today, I was looking for new inspiration and direction. My walking and balance is a little more wobbly, but the feeling on my left side (once quite numb) is much better in the last month now. So, in a way, I feel that I am doing better. I no longer feel like I have two different sides but have one body. I can make my left hand do things like brush teeth and type. (Having Parkinson’s does not make you ambidextrous; it is just that your non-sided hand must help out if it need be. There’s no comfort in that: it doesn’t have the coordination that the sided hand does, if that is the one that is affected). I hope that this (one-body experience) is part of my recovery. I want to work harder on my health, as I keep thinking of the interview of the woman who had deep stimulation (not the poetry writing lady, the one before that). She said if she had it to do over, she would have given the alternative therapies a better chance.

Searching around the recovery website, I read many blogs as well as listened to past interviews and this week’s interview, which included mention of stiffening in the chest related to the breathing. Taking your suggestion of working on one symptom, I decided to compensate for my shallow breathing for a week, moment by moment. I’m always deflated, and I know that I have not been getting enough oxygen. Starting that, I decided as well to root out one thought form that may be contributing to this condition. I thought that it would take some time to discover one, but it came up immediately. The woman with the CORD therapy said, in general, that Parkinson’s people have a reality print of
‘I can’t quite do this, or measure up’.
I understand that. I can affirm, I can do this, I can, I can–anything. Believe me, this is a different type of energy to have within myself, though I have accomplished a lot in my life. Idid it by simply pushing. I want my brain to learn something new here of real confidence.

I found a boost in this story from my own saved archives.

This story makes you think about your potentials, as the woman in the story did. She went to college in her 60s and got the geology degree that she always wanted. I can at least accomplish everything that is before me this week. Thanks for your site again. I’m working on getting it to two other people with Parkinson’s.

Alan

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Oct 11 2009

Train Your Mind. Change Your Brain

Here are some resources to share:

http://www.befitoverfifty.com/pages/thera.htm?source=OverTo

Although the first part is “depressing” to read, the section on “Why Exercise Is So Important” is simple and motivating. There are yet more exercise programs for people with muscular and neurological disorders on this link, but I am not sure of their availability.

I am reading a new book (to me), Train Your MIND, Change Your BRAIN by Sharon Begley, (Ballantine). This is a survey of how the brain adapts to the kind of thinking we do and the feeling modes that we experience.

The Dalai Lama figures in this story with his patient challenge to neurological researchers on the reverse of the belief “the brain creates the mind or the mind is the result of brain activity”–doesn’t the mind affect the way the brain operates? Beliefs in science are hard to confront.

This book is about research on this confrontation. There are stories of experiments in re-training the thinking of people with depression and obsessive/compulsive disorders. As they corrected for their distorted thinking, they experienced relief, even when medication was supposed to give them relief. Re-training our thinking is crucial because our brains respond to the perception of our reality. The experiments related in the book can inspire ideas on working our own programs. Parkinson’s isn’t even mentioned, but strokes are.

The evidence shows that plasticity or brain/neural changing doesn’t occur only in childhood but throughout life. A Tibetan monk, whom the Dalai Lama knew, was imprisoned by the Chinese for 18 years, a time which included torture. When freed, he was found to be the same gentle, mentally sharp man that the Dalai once knew, just like he was before the imprisonment. Was he ever afraid? Yes, he was afraid that he would lose his compassion for the Chinese.

“Because of forgiveness, his bad experience with Chinese not got worse,” said the Dalai Lama.

This anecdote shows that mind is over matter. The book goes on to explore, from the Buddhist perspective, what mind is or does. The link between Buddhist thinking and scientific neurological research is attention and attention training.

Thanks for all that you do!

Alan

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Sep 27 2009

I Never Saw It Coming

I never saw it coming.
My life’s been rearranged.
So altered, not original,
I’ll never be the same.

The breath I breathe reduced,
The functions that I had,
the limitations place on me,
sometimes, it makes me sad.

I struggle almost every day
to do those basic things.
Can never plan what I’ll do next,
not sure what next, life brings.

My heart still has the want to…
My head might misdirect,
but I get up, keep going.
My feelings I protect.

I’m not the kind to give up.
I’m not the kind to quit.
Sometimes, I’m very mobile.
Sometimes, I have to sit.

So, if your body’s healthy,
your mind is good and strong,
today’s the day, give life your all,
tomorrow, it could be gone.

Kenneth Allen Patrick

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Sep 25 2009

Dopamine and Parkinson’s Disease

Question:

You do not believe that Parkinson’s is a disease!!!!!

Do you not believe that there is physical damage to the part of the brain that produces Dopamine?

Do you not believe that the damage has been verified by examining brain tissue from deceased Parkinson’s patients?

“The body is not broken. The body is not diseased. It is simply out of balance”

Is the brain not part of the body? Is the brain just “out of balance”?

Dennis

Response:

Thanks so much for your e mail and your question. I know many people think the same way you think.

I am not a medical doctor. I am a researcher. I find that the Road to Recovery involves examining our thinking about “disease.” – any disease. In this case of course it is Parkinson’s Disease. If we focus on the “disease,” we are holding very negative thoughts about what is happening by thinking:

“My body is broken.”

Since thoughts can manifest anything our heart desires, holding this thought will insure that our body will forever remain broken.

What percent of the body is “broken” in the case of Parkinson’s? I assure you that answer varies widely across persons. My hunch is that a tiny proportion of cells are problematic: perhaps 1%; maybe 3% for some people. At least 97% of the cells are working perfectly. I would say that is close enough for me to say that the body is working perfectly. Speaking for myself, I get much more energy by focusing on what is working than what is not working.

You say that damage has been verified by autopsies. This is certainly true, but only in a minority of autopsies. For a majority of autopsies, they find no substantia nigra damage. Don’t take my word for it. Do your own research on the matter. I have been surprised myself to see how low the percent actually is.

My point is that you are holding the belief that cells in your brain are dead. It may be the case that a tiny fraction of cells in your brain are dead,  but cells are dying throughout the body all the  time.  It is the natural process of life and death.

It is also possible you are one of the majority where there is no damage to your substantia nigra. There is no way to tell without an autopsy.

A third of the people who have a diagnosis of Parkinson’s are misdiagnosed. It happens. There is no definitive test for it. Perhaps you are one of the one third who have been misdiagnosed? There are certainly many possible causes for the symptoms. For example – perhaps toxins are the culprit and not cell damage in the substantia nigra.

Let’s say all of these speculations are wrong and that yes, you do have neural damage in the substantia nigra and that yes, you do have Parkinson’s Disease.

New cells can be created anywhere in the body anytime. If you happen to have an overabundance of dead cells in the substantia nigra for the moment, you can set your intention to grow new ones. If the body can make new cells, I would say it is working perfectly.

Here is the rub: If you focus on the dead cells (assuming they even exist) you are assuring that new cells will not be created. Your  thoughts are centered in a negative sphere. If you focus on the reality that your body can heal itself, it will heal itself.

This is what I have learned from my research. At the core of  all healing are our thought forms. If you think your body is broken I can assure you it will remain “broken” and become more “broken.” If you believe your body can heal itself, new cells will be born, hormones will be balanced, and your body will return to health and wellness.

The most powerful force in the universe are thoughts. When we change how we think, we change the course of our lives. This is what motivated me to write The Five Steps to Recovery which is all about how to transform our thoughts.

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

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Sep 11 2009

Mantras for Health

Published by admin under Thoughts and Parkinsons

Thanks for all you do in educating us about Parkinson’s.  Here’s some positive quotes I tell myself everyday:

  1. I’m going to beat the snot out of this puppy.
  2. I won’t need no stinkin’ wheelchair or walker.
  3. Stem cell research WILL find a cure in my lifetime.
  4. Drugs are good.
  5. I thank God everyday for having chosen me to have Parkinson’s.  Hey, 1 out of 100..I’m pretty special!
  6. Michael J. Fox and Dr. Robert Rodgers, Ph.D.  are our champions!
  7. I’m proud to be a Parkie.
  8. Buttons suck!  Use Velcro!
  9. A dulled sense of smell can be a very good thing in a crowded elevator!
  10. I am here for a purpose..God is great!

Rose

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Aug 18 2009

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

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