Apr 13 2012

Does Carbidopa/Levodopa Hamper Recovery?

Published by under medications

I use carbidopa/levodopa daily and have for about 4 years. I’ve tried with out the medication for about 2 weeks on two separate occasions recently. Unfortunately I was shocked at how difficult all movement was without it. But I’m concerned its use may hamper my recovery. Any data on this?

Pat

Response:

My research reveals that it is not advisable to stop taking any prescription medication – to go “cold turkey” as it is described. The emergence of the heightened symptoms you describe explains why.

If you decide to reduce the medication after consulting with your doctor it is critical to do so slowly and gradually. Compounding pharmacists are an ideal resource who can help you reduce the dosage very gradually so that the reduction does not trigger strong side effects.

The challenge with taking medication is that over time, more and more medication is needed to achieve the same result. Eventually, increases in dosage have no added impact and begin making matters worse.

A number of persons have reported that this particular medication has helped them get back on their feet so that they could begin doing what is required to reverse the symptoms. Once other options are found that address the causes of your symptoms, many people find they do not need to take as much medication and some have been successful with weaning off of them completely. This of course is a slow process that needs to be pursued mindfully.

In the end, it is a question of balance. There are a multitude of therapeutic options that are helping people reverse their symptoms. Many of the persons who have found therapies that are helpful (and who have been guests on my radio show) will be presenting workshops at the Parkinsons Recovery Summit in Cincinnati in June, 2012. Once options in addition to the medication are identified and found to facilitate a reversal of symptoms, most people find it is possible to begin reducing their medication dosage very gradually in close consultation with their doctor and their compounding pharmacist.

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

No responses yet

Apr 13 2012

Coaching

Published by under coaching

Awhile back you had someone on your radio show from Tampa, Florida who has a coaching program for Parkinson’s. What is the name and what is the phone number that I can call them at?

Response:

His name is Howard Shifke. Howard’s phone number is 813-404-6821  and his website is:

www.fightingparkinsonsdrugfree.com

Incidentally, Howard will be one of the presenters at the Parkinsons Recovery Summit in June, 2012.

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

 

No responses yet

Apr 11 2012

Angela’s Recovery Summary: Week 12

Published by under recovery

Dear Ones,

This is our last week in Florida.  On Friday, April 13, we return to our home in White Rock BC where major reconstruction works will resume repairing the damage from the water leak that occurred in January.  We have been in Florida for nearly 3 months, quite possibly the longest time I have been in one place for most of the past 20 years.

In some ways it has been the most difficult week yet, garnering two hearty thumbs-up from Howard during our weekly Skype.  I have Mr. Parkinson’s attention and he is fighting back.  Meanwhile, I have a couple of interesting observations.  I bought a beach ball to help me with the Standing Qigong exercise (the instructions say to hold your arms out in front as if holding a large ball, so I thought that using an actual ball may make the exercise more doable – it works).  While carrying the beach ball in front of me from the store to the car, I noticed that I could walk much more easily.  Without the ball, my right leg tends not to step forward but rather only catches up with my left leg.  When holding the ball out in front with both hands, my right and left legs both move normally – quite a novel feeling since I haven’t been able to walk properly for over a year.  I have also discovered that I can walk even better and faster when I bounce the ball in front of me.  So now when I go for my daily walk I carry my beach ball with me!  Late news: I have just found that holding a tennis ball is also effective in correcting my gait.  I think it is more socially acceptable to carry a tennis ball with me than a large beach ball – unless of course I am at the beach.

A second observation this week has to do with the movement of my right fingers.  When I first saw a neurologist in February 2007, and was instructed to wiggle my right fingers as if I was “air typing”, I couldn’t move them.  This was a major piece of evidence in the preliminary diagnosis of Parkinson’s disease.  As you can imagine, this has significantly impaired my ability to use a keyboard and to write.  Last Friday, I mentioned this to my chiro chi practitioner Lynn Migdal, and demonstrated the inability to move my fingers.  She adjusted my C-5 vertebra.  Since then, I have been able to move my fingers.  After 5 years, it is quite a novel feeling to have conscious control over my right fingers once again.

Being on Howard’s “Recipe for Recovery” has certainly tested my PD symptoms.  To an impartial outside observer, my symptoms (mostly the tremours) may appear to be worse than when I began the Recipe.  Yet in my mind – and heart, and soul – I feel I am making progress.  I do not need or want medications that hide my symptoms yet do nothing to prevent the progression of PD (for those already on PD meds, Howard’s Recipe has enabled many to cut way back on their use as their movement improves).  Mentally, I am firing on all cylinders.  Physically, I am somewhat impaired but I’m still able to get around and even find time for the occasional tennis game.  Spiritually, I am reawakening.  I feel great!

I have resolved to continue with the Recipe for as long as it takes.  Howard has completely recovered from PD by following it, as has Marie.  That’s two more people completely healed than are said to be possible according to conventional Western medicine.  I would rather live in hope of a complete recovery than resign myself to having an incurable, progressive disease.  So many people (me included) upon receiving the diagnosis of PD are dismayed that there is no hope offered whatsoever for healing.  Hopelessness defeats.  Hope heals.  Many people diagnosed with cancer report that hope has helped them recover against great odds.  I believe it can be the same for people diagnosed with PD or other so-called incurable neurological disorders.  One in a million is still better than impossible.  It is a fight worth fighting.

I love the unlovable,
I accept the unacceptable,
I dream the undreamable,
I accomplish the impossible.
I am limitless.

All my love,

Angela

No responses yet

Apr 04 2012

A Novel Solution for Falls and Balance Problems

Published by under balance problems,falls

Many of the therapies I have identified in my research over the past six years require a minimum level of functionality. We know exercise helps many people with their recovery, but if a person falls repeatedly and has balance problems, exercise may not really be a viable option. Moreover, if movement is problematic, it is very challenging to reverse any symptoms that might currently be experienced.

On my radio show today (Wednesday, April 4, 2012) Physical Therapist Cindy Horn discusses a solution she has recently invented: Balance Based Torso Weighting Technology. To watch a video demonstration of this custom weighted jacket, click on the link below:

http://www.youtube.com/watch?v=wRbmOkUzoq4&list=UUApZX-0NOFentcTAv9-xp3A&index=1&feature=plcp

After watching the video, be sure to listen to my interview with Cindy Horn on the radio show Wednesday at 3 pm pacific time (6 pm eastern):

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

Call in during the show if you have questions!

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

 

No responses yet

Mar 28 2012

Harmonic Healing at the Parkinsons Recovery Summit

Published by under sound healing

Judith Lynne is my guest on the Parkinsons Recovery Radio Show today. She has elevated the potential for healing using the voice to a new level. She has used her gift to help reverse her own Parkinson’s Symptoms and now helps others do the same.  This video was taken at the 2011 Parkinsons Recovery Summit in Vancouver. The best news of the week is that Judith will be offering a workshop at the 2012 Parkinsons Recovery Summit in Cincinnati.

Judith takes her experience as an opera singer to a new level with her work as a harmonic healing for persons currently experiencing the symptoms of Parkinson’s. This is a truly novel approach that employs the powerful modality of sound as a natural, safe and effective therapy. For more information about Judith Lynne’s incredible with with harmonic healing, visit:

http://www.HarmonicHealing.com

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

 

No responses yet

Mar 26 2012

Side Effects of Parkinson’s Medications

Published by under medications,sinemet

Writing for my partner, H, 55, who was diagnosed with PD about 6 yrs ago.  Went on Sinemet last Sept when his body went rigid.  I “re-met” him in October and  immediately began researching alternatives.

H asked me to move in last Jan to assist with his care.  Since then, we have both turned our eating and exercise habits around 360*, his esp from the comfort of a steady diet of Coke, cookies and pizza to Dr. Wahl’s suggestions, tons of greens and veggies, no sugar/no wheat/little dairy.   

Exercise has increased to nearly daily walks, up to 4 mi, though it requires all his concentration to keep his right foot from dragging.

Body work — foot holding and gentle massage, Bowen as best I can understand it from books (no local practitioner).

All of this seemed to have a positive effect on his symptoms, several weeks with many good tremor-free days, mood elevated and better sleep until a few days ago when his tremors became suddenly more violent and muscles knotted again.   The massage gives him relief from the tremors for a few hours.

Is it possible that the 4 Sinemet he’s been taking daily might now be causing the same  symptoms they were supposed to help?

Nancy

Response:

I extracted the following information on side effects for Sinemet, a Parkinson’s medication, from www.drugs.com which is quoted below. There is quite a bit more information on the website you may also want to study.

Seek medical attention right away if any of these SEVERE side effects occur when using Sinemet”  

“Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black, tarry stools; blood in vomit; chest pain; confusion; depression; fast or irregular heartbeat; fever; hallucinations; mental or mood changes; muscle pain or unusual stiffness; new or increased involuntary movements; severe abdominal pain; severe light headedness or fainting; sore throat; thoughts of suicide; unexplained fever or sweating; unusual bruising or bleeding; unusual or painful movements or spasms of the face, eyelids, mouth, tongue, arms, hands, or legs; vision changes (blurred or double vision); yellowing of the skin or eyes.”

“Nervous system effects occur in as many as 50% of treated patients on long-term therapy and include involuntary movements and mental status changes most frequently. The types of involuntary movements due to levodopa have been characterized as choreiform, dystonic and dyskinetic. Fluctuations in motor function occur frequently and often increase as the duration of therapy increases.”

“This is not a complete list of all side effects that may occur. If you have questions about side effects, contact your health care provider. Call your doctor for medical advice about side effects.”

Response

My reading of the above side effects suggests that the answer to your question is yes – it is possible that the medication might be causing the same symptoms they were developed to help. Of course we do not know whether this is happening in your partner’s case.

The reason the FDA is involved in regulating prescription medications is to insure that the side effects are well documented.  As you will be able to see from a review of the side effects that are reported in the drugs.com website, the documentation on possible outcomes is exhaustive.

It is important to keep in  mind that everyone’s body is different. There will be a wide variety of reactions to any medication – some good and some adverse. My research reveals that Sinemet does provide relief for some people, but for other people it can cause side effects that can be worse than the symptoms they were supposed to address. This is really not that different from using any prescription medication regardless of the reason for its use.

It would be a good idea at this point to get a follow-up consultation with your doctor who will be in a position to evaluate what is really happening here and possibly suggest alternative courses of treatment.

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

One response so far

Mar 24 2012

Little Appetite Since Starting to Use Sinemet

Published by under fava beans,mucuna,sinemet,Summit

I have had “diagnosed” Parkinson’s for about 5 years. I have been on Sinemet for about one year.  I have had trouble keeping weight on. In fact I have lost about 13 pounds, probably due to the fact that I have had little appetite since starting to use Sinemet.

Also, I often get “stomach aches” after eating and have to lie down. I can’t pinpoint any particular food that causes this distress. Have you come across this situation in your  very many conversations with people who have Parkinson?  

Thank you so much for your help.  

Sydelle

Response:

Everyone responds differently to medications. Each body is uniquely configured. That is what makes each person so very special.

Sinemet is certainly at the top of the list in terms of preferred medications to treat the symptoms of Parkinson’s and it has been shown to help many people. My research reveals it is not necessarily a good solution for everyone.

You ask if I have come across a situation similar to yours in my research. Yes, some people are unable to tolerate Sinemet. It would be very advisable to discuss the symptoms you are experiencing with your neurologist as soon as possible. They are the experts on prescription medications that can be taken to address the various symptoms of Parkinsons.
And of course they are the individuals who are qualified and trained to help you solve this problem. Neurologists attended school for years to learn how to help people just like you who have experienced the side effects of medications.

Since the appetite and digestive issues began after starting the medication, my guess is that these symptoms are likely due to the medication. Your doctor could determine this for certain.

The FDA does a good job of identifying and publicizing all possible side effects from medications. Below is a short list of side effects from Sinemet which I extracted from a search on the internet. It is a good idea to do your own search as well:

Side effects of Sinemet

Confusion; constipation; diarrhea; dizziness; drowsiness; dry mouth; headache; increased sweating; loss of appetite; nausea; taste changes; trouble sleeping; upset stomach; urinary tract infection; vomiting.

Gastrointestinal
Exacerbation of preexisting ulcer disease with severe upper gastrointestinal bleeding has been reported.

Gastrointestinal side effects including nausea and vomiting are the most common adverse gastrointestinal effects of levodopa. Anorexia and, rarely, gastrointestinal hemorrhage have been reported.

As you can see – the symptoms you currently experience are contained in the listing of some possible side effects. Your doctor is the best resource to solve this problem.

My research has revealed that some people supplement their prescription medications with natural sources of dopamine. One such source is discussed on the fava bean website:

www.favabeans.parkinsonsrecovery.com.

The host of this website – Aunt Bean – will be offering a workshop at the Parkinsons Recovery Summit in June where she will give detailed instructions on how to make your own dopamine from fava beans at home. This is precisely what Aunt Bean does to treat her own Parkinson’s symptoms very successfully.

In summary, it appears as though your body is telling you that this particular is not helpful. Discuss the problem with your doctor and explore other options with their assistance. If you decide to begin making a natural source of dopamine as Aunt Bean does, you will need to work very closely with your doctor. While fava beans and Mucuna are natural sources of dopamine, they are still medications which will influence the effectiveness of whatever other medications you may decide to take after consulting with your doctor.

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

No responses yet

Mar 21 2012

Is My Dopamine System Becoming More Stable?

Published by under diagnosis,Dopamine

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

One response so far

Mar 20 2012

CCSVI and Parkinson’s Disease

Published by under CCSVI

Hi, I’m Italian. My husband has suffered from Parkinsons Disease since 2009. He’s 56. He began his drug therapy 1 year and a half ago. We visited the best neurologists in Italy but we know that drugs address symptoms but do not take definitely address the underlying reason for the illness .

I’m writing to your forum to know if there is someone with idiopathic  PD who has also got a dignosis of CCSVI ( Zambony protocol) as in my country is only studied the connection between CCSVI and MS (Multiple Sclerosis).

If there is anyone who can give me information, perhaps in the USA or in Canada this kind of research or studies have already done or experimented (with angioplastic surgery….)

Thanks for the answer

Marica

Response:

Researchers have identified a connection between the restriction of blood flow to the brain (as evidenced by the condition known in medical science as CCSVI) and the symptoms of Parkinson’s disease. Clearly, any rejuvenation of brain cells requires an adequate supply of oxygenated blood. If this supply is restricted, the body will obviously struggle to form new neural networks.

Gord Summer, one of the 11 contributors to the 2012 release of Pioneers of Recovery, suspected that a restricted flow of blood to his brain might be contributing to his own symptoms. Doctors confirmed his suspicion. Once the blockage was cleared with surgery, many of his symptoms reversed.

Gord will be offering a workshop at the Parkinsons Recovery Summit in Cincinnati this summer. You will find contact information on the Summit website:

www.summit.parkinsonsrecovery.com

I am quite certain he would be pleased to share his own experience with you.

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

No responses yet

Mar 18 2012

Pain and Parkinson’s Disease

Published by under pain

I am in the first stage of Parkinson’s disease, but lately I have excruciating pains on both my shoulder. The neurologist said it is not the disease. I am wondering if it is arthritis or what

Eva

Response

Clearly, the pain in your shoulders is present and creating a significant challenge at this time regardless of whatever name that might be attached to it. I think it helps to acknowledge your body is sending out a signal that something is out of balance and merits a little tender loving care.

I think it is wise to let the doctors apply labels to what is happening which is necessary for them to prescribe medications. That is what they are trained to do.

Do people who currently experience the symptoms of Parkinsons experience excruciating pain too? Yes, some clearly do and it is one of their primary symptoms. To acknowledge this, I invite you to click on the category to the right of this blog entitled “Pain” and you will see a number of other people have written in with a similar question. Of course, you will also see the responses I have formulated, which in general suggest a number of approaches that have been successful for other people.

There are other options that can be entertained which involve delving into the underling cause of the pain.  For example, consider the possibility you are taking on too much responsibility on your shoulders. That would certainly create the pain that you describe above. Once you have some idea of the underlying cause of the pain – you can pursue therapies that are well equipped to address the problem.

Know that there are many options available. You are invited to read some of the other discussion on pain here by clicking on the category pain to the right. Keep scrolling down – this post will be at the top once you click on the category to the right.

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

No responses yet

« Prev - Next »