Cohen’s family doesn’t consider MS to be a blessing. However, as a result of growing up around a chronic disease, his children have learned to be empathetic and patient human beings.

I never could grasp the concept of stages in Parkinson’s Disease. With the symptoms of Parkinson’s varying so much from patient to patient, I couldn’t determine what stage of Parkinson’s I was at and even if I did know, how did this impact how long I would live and how well or poorly I would function until I die.

Finally, someone addresses this important topic in the following article. I highly recommend it.  

Staging is Not Important in Evaluating Parkinson's Disease

By Joseph H. Friedman, MD, author of Making the Connection Between Brain and Behavior: Coping with Parkinson's Disease

From: APDA Newsletter Spring 2011

To read article, click on the following:

http://apdaparkinson.org/data/NewsLetterUpload/2011_Spring_News.pdf (article is on page 1, 6, and 7 of newsletter)

Comments on article on staging:

I would like to add that it is especially not relevant for DBS patients because it heavily relies on gait and balance, and DBS might not be very helpful with this issues.
Olga Klepitskaya, MD, Department of Neurology
University of Colorado at Denver Health Sciences Center

By Sharon Kha

Copyright 2011

A thin slice of new moon hung in the chill of the Arizona morning. Some of the people lined up at the trailhead had canes or walkers, and most of them had shaky hands and took short, lurching steps.  A wisp of the aroma of frying bacon was in the air.  Breakfast at the Rancho de los Caballeros dude ranch in Arizona wouldn't be for another hour, but the group at the trailhead was too excited to eat.  They all had Parkinson's Disease or were married to someone who did, and they all wanted to change their brains.

Pat Bemis wasn't looking forward to the week ahead.  Frankly, she was saturated with the demands Parkinson's made on her and her husband for the past 22 years.  She wanted a manicure, a pedicure and a good book.

Becky Farley was everywhere at once; shedding energy like sparks from a comet. "Plant your feet wider, PWR! UP  and you'll be steadier," she'd say. "Good, good, that's better." Her arms swung in wide arcs as she walked. "Activate!" she said. "Exaggerate your movements!"

Gardner Bemis, Pat's husband, shuffled to his place in line, hunched over and moving slowly. He used to be a neonatologist until his tremor got too bad. Now he lives in Steamboat Springs, Colo.  He had read about research done in Japan where newborns with brain damage had trained other parts of their brain to take over some of the lost functions.  He had seen remarkable recoveries in newborns with his own eyes.

"With Parkinsons, the brain pathways are still there," he said. "We haven't had a stroke or an injury to the pathway-we just need more of a particular chemical. It seemed to me that retraining the brain to compensate for PD should be relatively easy."

Recent basic neuroscience research in animal models of PD (rodents and non-human primates) suggests that exercise can halt or reverse motor symptoms and "change the brain."  The exercise was shown to increase levels of dopamine if started early enough.  But, even in those animals that had already lost 50-60% of their dopamine cells to Parkinson disease and that had obvious gait and balance problems  (as is more like the human condition at time of diagnosis), the exercise helped the remaining neurons work more efficiently.  So the brain learned how to do more with less dopamine and they walked and balanced better!   For example, there were more dopamine receptors, increased amounts of dopamine were released and it stayed around longer in the place where it was needed, and noisy/inefficient circuits were partially restored (Vuckovic MG, Quanzheng L, Fisher B, Nacca A, Leahy RM, Walsh JP et al. Mov Disord 2010;25(16):2777).  Studies suggest the exercise may bathe the damaged neurons and circuits in the brain with nutrients, like growth factors, which makes them sprout new connections and survive for longer.  It appears that brain change and reorganization occurs primarily in those “activated” circuits!  Giving support for the old adage:  Use it or lose it! 

For Martin Buckley, a Colorado Attorney, the "runner's high" when your brain is bathed in endorphins was a familiar sensation.  He likes to push himself but he thought he's never be able to push himself to runner's high again.  He was wrong. By the end of the week he was walking on a treadmill sideways and backwards and the runner's high was back.

Bemis, Buckley and 26 other people with Parkinson's put their brains through a veritable boot camp of forced use exercise that generated plenty of endorphins during their week at the dude ranch.  They started with a Parkinson's Wellness Recovery (PWR!) walk every morning, attended daily PWR! MOVES™ and PWR! Circuit classes that target PD-specific symptoms and movement deficits, went to lectures, and learned to do Yoga, Tai Chi, and meditation to decrease stress and its negative effects.  About half way through the week, both Gardner and his wife noticed that his posture had improved significantly, and he wasn't shuffling any more.  "I had been telling him for years to stand up straight," Pat said. "But Becky taught him what he had to do so he could stand straight." “PWR! UP”

Gardner noticed that his colleagues were experiencing similar changes. Two 80-year-olds who arrived with walkers were walking without them when they left. One woman discarded her cane. Another man walked down the aisle backwards to get his certificate - just because he could.  Brain change was a fact.

NeuroFit NetWorks is a non-profit organization founded by Becky Farley, PhD, MS, PT., and this was their first weeklong PWR! Retreat. "My vision is to build a community that recognizes and implements exercise as a physiological tool to help protect, repair and optimize brain function," Becky said.

She has already implemented her vision in her hometown of Tucson, AZ, where she opened a PWR! GYM.  People with Parkinson's can come every day and do exercises that are specifically designed to address particular physical deficits that are common to Parkinson's disease and improve the quality of their lives. She believes that the forced use repetitive practice of whole body functional movements that are most difficult for people with PD – when performed with amplitude, vigor and mindfulness will restore lost function, balance, and mobility from muscles and circuits made weak from inactivity and nonuse, slow motor deterioration, and basically make people happier. She also believes that continuous access to exercise that begins at diagnosis may even slow disease progression.  

"This isn't like brain surgery or meds," Pat Bemis said. "I could see the changes incrementally day by day-not only physically but emotionally. It was a "can do" approach after all these years of being told it is a progressive disease.  I felt like I had been to Lourdes in Arizona-and I'm very skeptical about things like this. I'm a nurse."

Gardner Bemis agrees.  "Too many doctors think that we have a degenerative disease so they pat us on the back and send us on our way and say 'Come back in three months.'  Becky has found a way to look at specific symptoms and design a plan that trains the brain to compensate for those particular conditions."

As important as the change in fitness was the change in attitude.  One evening, Martin and Debbie Buckley joined the rest of the group on a hayride to the desert.  They ate barbeque and watched the space station come overhead in the incredibly dark desert skies.  "It was very emotional," Martin said.  "There was a change of mind set as the week went on and you found you were able to do things you didn't think you could do.  We bonded, and we left happier."

People in Colorado this summer will have two chances to try Dr. Farley’s ideas for themselves. Clinicians and health and fitness professionals can attend a workshop either July 21-22 or July 23-24 at the Swedish Medical Center in Denver to learn Becky's techniques and become PWR! Exercise Experts.  People with Parkinson's are invited to join the PARKINSON EXERCISE REVOLUTION by attending a lecture at the Colorado Community Church on July 20. Details for both events are available on the NeuroFit NetWorks (www.nfnw.org) or by calling NeuroFit NetWorks at 1-520-270-9990.
    
Oh yes…. Pat Bemis got her pedicure.

I was alarmed when reading the study The evolution of diagnosis in early Parkinson disease. Parkinson Study Group published in Arch Neurol. 2000 Mar;57(3):369-72,  which stated that:

“Previous studies concluded that initial diagnoses of PD made by general neurologists were incorrect in 24% to 35% of the cases when patients were examined at autopsy. Experts in movement disorders are expected to have greater accuracy of initial diagnosis of PD.”

I was one of the “lucky” ones. I went to a general neurologist when I observed a tremor in my left hand 15 years ago. I was diagnosed with Parkinson’s Disease at the age of 46. In my case, the neurologist ruled out benign essential tremor (a misnomer, as there is nothing benign about it), brain tumor, Wilson’s Disease and Lou Gehrig’s disease. I was ”lucky” that I was diagnosed and received treatment so quickly, unlike others who go for years and years, from doctor to doctor, without an accurate diagnosis and receive either no or inappropriate treatment. I was able to avoid those condescending comments from doctors such as “it’s all in your head” that hard-to-diagnose patients often receive. These patients later discover that it was indeed all in their heads, but not in the way that they originally thought.

When patients are struggling to get a diagnosis, I often suggest that they get an opinion from a movement disorder specialist. A movement disorders specialist is a neurologist who has taken additional training in the subspecialty in neurology called movement disorders. Movement disorders specialists are often involved in research and/or teaching in addition to their clinical concerns and are more typically found at major medical institutions. Such professionals typically follow a greater number of patients with these disorders and are generally more experienced in the use of the various medications (and their combinations) as compared to a general neurologist, an internist or general practitioner.

The topic of misdiagnosis is being discussed this week at the 15^th International Congress on Parkinson's Disease and Movement Disorders in Toronto, Canada. Betsy Vierck reports on this topic from the Congress at: http://www.recentlydiagnosedwithpd.org/home/2011/6/7/report-from-toronto-kudos-to-these-docs.html

Related Article:

Steps to Finding a Movement Disorder Specialist by Beka Serdans, RN, MSN http://www.care4dystonia.org/newsletter/StepstoFindingaMovementDisorderSpecialist.pdf