I Still Believe In A Process Called Hope!

Introduction

In one of my earliest posts, I wrote about how on the weekend of my diagnosis, I wandered around the streets of New York City muttering to myself, "I need a plan… I need a plan… I need a plan..." I then remembered something my father said in talking about something horrible that had happened in his life. I asked him, "What did you do?" He responded: "What do you think I did? I had a wife and children to support. I got up the next day and I went to work." At that point, I felt that I did not need a plan. I believed strongly that all I needed to do was to get up on Monday and go to work.

I realize now that I was wrong. I did need a plan and I was forming one. Although I was unaware of it at the time, "getting up on Monday and going to work", was a step in a plan (actually a Plan B) toward a goal. The goal was happiness and I would reach it through a process called hope.

Brené Brown
I recently read Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead by Brené Brown. In this book, she illustrates that hope is often a Plan B.
In short, your life is going along well when something happens, such as an illness or financial crisis and you realize that you need a Plan B. She then referenced The Psychology of Hope: You Can Get Here From There by C.R. Snyder. Over the course of three evenings, I devoured this book.

C.R. Snyder

Snyder's research indicates that hope is not the same as wishing or optimism, but an actual process in which hope = mental willpower + waypower used to achieve goals. Hope is not optimism but there are correlations in that high hope people tend to be optimistic.

The difference is that an optimist often looks for external variables to explain away failures, while someone who is high on the hope scale links her actions to her success. High hope people often recognize that the plan used in attempt to achieve a goal was ill-conceived or poorly executed. Either way, they try again!

Key Points: 

• Willpower is a reservoir of determination and commitment
• Waypower is composed of mental plans or roadmaps, which provide a route to your goals
• Waypower often provides alternate paths to goals or a Plan B
• Hopeful people are often the ones who have overcome previous difficulties 

Back To Me

In my early 30s, I finally came to grips with fact that I was not a happy person. I also decided that I did not have to be this way and made achieving and maintaining happiness my goal. I soon realized that therapy and medication alone would not get me there. I decided, therefore, to take a behavioral approach. As a social researcher, I decided to observe happy people and then to do what they did. Yes, I actually did this! What I learned was truly enlightening and very simple. I found that happy people danced!

The year was 1998 and for some reason, it seemed like everyone I knew was swing dancing. I then saw the Gap commercial for khakis (see below) and it changed my life. I took swing dancing lessons three nights a week and even learned some fancy aerials. I never became a good dancer, in fact, I would say that I was mediocre. I did, however, make a lot of new friends who I am still close with today. These friends changed my life and I was happy.

After being diagnosed, I needed a Plan B. I knew that dancing, being physically fit and even becoming Vice President of Student Affairs would not lead to happiness. In an unconscious and haphazard manner, I put together this plan that included:

• Seeing my doctor on a regular basis 
• Taking my medication
• Exercising
• Clinging tight to family and friends
• Asking for help when I needed it (Thanks to Kate Lynch for this advice)
• Becoming involved with the Parkinson's Foundation (Thanks to Jori Fleisher)

How did it work out? Pretty well. My hope score is average (24), but overall, I would say that I am fairly happy. In the past four years, I (*we) have:

• Participated on two patient panels
• Raised $5000 for a Parkinson's Disease charity 
• Was a guest on Parkisnon's TV 
• Contributed to a published article
• Attended two trainings with the Parkinson's Foundation
• Was the co-recipient of a grant
• Participated in a clinical trial
• Donated my DNA
• Took part in multiple research studies  

*I almost never accomplish anything without a great deal of help from family, friends and colleagues. The above accomplishments were the result of group effort.

I do not smile that often, but every once in a while, someone captures a moment.

Here I am with Ocean.

What Does This All Mean?

I think that the hope scale has tremendous potential for studying people with Parkinson's Disease. This instrument could be used to see how a lack of dopamine in Parkinson's patients affects willpower. I also wonder if the "fuzzy thinking" found in many Parkinson's patients affects waypower? I hope that doctors, nurses and therapists start using this instrument in treating people with Parkinson's disease.

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Hey You! 
Why not try the Hope Scale. yourself? Answer each question honestly with a corresponding number, add up your scores and and see how you did in both the willpower and waypower categories.

Hope Scale

1 = Definitely False   2 = Mostly False  3 = Mostly True  4 = Definitely True

_____ 1. I energetically pursue my goals.

_____ 2. I can think of many ways to get out of a jam.

_____ 3. My past experiences have prepared me well for my future.

_____ 4. There are lots of ways around any problem.

_____ 5. I have been pretty successful in life.

_____ 6. I can think of many ways to get the things in life that are most important to me.

_____ 7. I meet the goals that I set for myself.

_____ 8. Even when others get discouraged, I know that I can find a way to solve the problem.

Willpower =Odd

Waypower = Even

Links to other hope scales and further research:

Adult State Hope Scale
Trait Hope Scale
Handbook of Hope
Academic Domain Hope Scale

24 Average score

Below 24 = low hope

Above 24 = high hope

Conclusion

I still believe in a process called hope!   

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World Parkinson's Day, Parkinson's Disease Awareness Month & The Danish Consulate

Today, April 11th, is World Parkinson's Day & the month of April is Parkinson's Disease Awareness Month. With this in mind, the Parkinson's Foundation has requested that we share our KeyToPD with the community. These are essentially life hacks, I made the video below encouraging people to adapt.

Here are some additional life hacks:

• If you cannot button your cuffs or that annoying little button on your sleeve, roll up your sleeves. This is a completely acceptable fashion statement, especially since the chances are that you have worked hard all your life and probably have nothing to prove to anyone. (Thanks Jori E. Fleisher, MD, MSCE).
• What if you like the look of a button-down shirt, but do not want to deal with all of those buttons? Why not try a popover shirt? You can further disguise the shirt by wearing a tie or a sweater vest.
• I used to be able to hold my coffee & shoulder bag while simultaneously opening my office door. Sadly, those days are over. If you find yourself in the same situation, simply install (or have someone else do it) a cheap wall shelf from the dollar store or Home Depot. Put all your stuff on the shelf, unlock the door, hold it open with your hip and then grab all your stuff. If you have Parkinson's disease this is much easier than having to place all of your belongings on the floor prior to opening the door. With PD, bending over can be a challenge.

Here are some more facts that you may not be aware of from the Parkinson's Foundation:

Sadly, I am one of those 70 to 90%. Good thing that my wife reminds me when it is time to change the litter box! While this seems like a minor annoyance, food does not taste as well, which explains why so many PD patients lose weight!

The above image is a nice segue into:

 

I was proud to represent the Parkinson's Foundation at Danish Science in the City 2019. After an introduction from, Consul General in New York, Ambassador Anne Dorte Riggelsen, I was part of the patient panel conducted in an effort to explain to pharmaceutical companies, investors and researchers the experiences of patients with clinical trials.

One of the big takeaways from this day was that while there may be many gene therapies in the pipeline for the treatment and/or cure of PD, these may not be developed unless health insurance companies are willing to pay for them. While cures for orphan diseases may be developed, neurological conditions, such as PD, may affect far too many people (1 in a 100) & therefore, insurance companies may not pay for these treatments. Organizations like the Parkinson's foundation are working on this, so more news to follow.

How Am I Doing?

I have been asked repeatedly to make this blog more personal. Everyone has been so kind to me and not a day goes by without someone asking, "How are you doing?” The answer is okay. While I really have not progressed on the Parkinson's scale, it seems as though I have developed some dyskinesias. One of these makes my right foot turn in when I walk & this makes it much more difficult to pretend to walk, "normally." In addition, I have developed a neck tremor or dyskinesia which makes it look as though I am shaking my head no. So if you think that I am disagreeing with everything that you have said, it is probably just my tremor!

I am busy enjoying my life and I am about to leave for Paris with my wife to celebrate her 50th birthday and our 10th wedding anniversary. You are okay Kate Lynch! I love you more today than ever. Kate is busy with her blog, podcasts, website,and planning a yoga retreat. She is promoting yoga for everyone & contributing to a more inclusive yoga community.

Our son Ocean is eight years old and we are very proud of him. He is busy with school, soccer and learning all about outer space. Ocean, I am very proud to be your Daddy!

That is all for now. Thank you for reading and please, consider joining my blog.

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Multidisciplinary Care For People With Parkinson’s Disease: The New Kids On The Block!

Introduction

“Everybody does have a book in them, but in most cases that's where it should stay.”

 The above quote (which I love) aside, I may someday write a book entitled, "What I Wish I Knew About PD: I Stumbled So You Won't Fall." 

One chapter might be, "What the hell is Thermoregulatory Dysfuntion or Why I am I Always Freezing or About to Pass Out." Yes, Thermoregulatory Dysfuntion (the inability to adjust to hot or cold weather) is a thing with PD Patients that gets worse as the disease progresses. I am always shivering outside in the winter. This summer at Coney Island, my son and friends admitted it was hot, but nothing out of the ordinary for July. I on the other hand, had to seek out shade because I was on the verge of passing out!  So, In Jamaica, I went from the water to a lounge chair under an umbrella. Tanning is for the foolhardy anyway. This winter, I purchased two pair of lined pants, ski gloves, several sweaters, vests and hats. The result: I was almost comfortable!

Chapter 2 will be, "How to Make Your Dentist Rich." Last week, I slammed my fist into the arm of a dental chair in time with the chant, "FUCK-FUCK FUCK!" I then realized that my dentist was still in the room and muttered, "Sorry Charlie..." (We have known each other for over 25 years, so he cuts me some slack.) I had split another tooth in half and had to schedule dental surgery for my third implant since my PD diagnosis. Yes, there is a correlation between PD and dental issues. These are most likely caused by a lack of saliva and teeth grinding exacerbated by Dystonia.

There will be several chapters on medication and side effects such as hypersexuality (don't ask). At least one chapter on community building and getting involved as working with the Parkinson's Foundation has really helped me through some tough times.

I have always dreamed of spending Spring, Summer and Fall in Brooklyn and Winter in California walking on the beach with my Wife, Son and Grandchildren. (Hint-hint Ocean!) In this dream, I am never wearing dentures, sweating, shivering or using a cane!

With the above in mind, I jumped at the chance to contribute to the article below:

Multidisciplinary care for people with Parkinson’s disease: the new kids on the block!

I am proud to be one of the many authors:

Danique L. M. Radder, Nienke M. de Vries, Niels P. Riksen, Sarah J. Diamond, Ditza Gross, Daniel R. Gold, John Heesakkers, Emily Henderson, Adrianus L. A. Hommel, Herma H. Lennaerts, Jane Buschk, Ray E. Dorsey, John Andrejack and Bastiaan R. Bloem

Abstract (Simplified):

Parkinson's Disease is a progressive, complex disorder that can affect many areas of a patients health and treating this disease requires a team approach. When treating PD many people think of only movement disorders specialists and/or PD nurses. While this is true, a holistic approach also must include all of the patients health care professionals and the patient herself.

Some medical professionals who might be included in this team are gastroenterologist, pulmonologist, neuro-ophthalmologist, urologist, geriatrician/elderly care physician, palliative care specialist and dentists.

This Article Suggests A Patient Care Team Should Look Like This:

A Personal Note:

Reoccurring (three times) frozen shoulder was one of the my first early warning signs and I wish that my orthopedist knew more about PD. He is a great Doctor with an excellent bedside manner who is well respected in his field.  I continue to recommend him to friends and coworkers. He sent me to a neurologist, but was not treating me as a member of team of health care professionals. I only wish that I could get the time, sick days and co-payments that I spent on physical therapy back!

My dentist was the one who finally convinced me to seek out a second opinion and for that I am eternally grateful. Thank you Charlie! If you live in NYC call 212 473-2343 for an appointment.

My Dental Issues 

Since my diagnosis, I have had two dental implants and a third is scheduled! This is one of the hidden costs of PD. Why is this? Theories include a lack of saliva, which would normally breakdown sugar in a healthy patient and muscle tightness (Dystonia) which in turn causes teeth grinding.

From the Article
"In a study published in 2012,  researchers examined 90 people with PD and found
that they had an average of four additional missing teeth per person compared to their age-matched peers"

A Conclusion of Sorts :

I once read an article in my field (Student Affairs) which indicated that over 90% of published Student Affairs articles were never cited in other research studies! Of the 10% of the articles that were, 90% were cited by the author of the original article! I cannot think of what is worse, the fact that this articles was published or that I bothered to read it! At this risk of falling into this same trap, I will end this post by quoting myself,

"Finally,with the knowledge gained by working with multiple healthcare providers, patients can become better self-advocates and actively participate in the care delivered by the multidisciplinary
team. Healthcare professionals need to get together with their patients and discuss treatment options. So, have a cup of coffee together and save a seat at the table for us!"

Inbrija

So, what is this Inbrija everyone is taking about? I am so very glad that you asked! It is a medication (levodopa in an inhaler) for off periods. I will try to simplify this with a personal explanation. I take my medication (carbidopa/levodopa) at 6am, 12noon and 6pm and my off periods are roughly 11am to 1pm and 5pm to 7pm. Essentially, off periods are when the effects of one dose is wearing off and the next dose has not taken effect. At these times, my hands move slower, my voice fluctuates and my right leg drags as my right foot turns out.  Hopefully, Inbrija will help!

Why did the development of such a drug take so long? The answer to this question is long and complicated. Essentially, it is because there is no profit in it. Wow, that was neither long nor complicated! The reason for this is the patent is up on carbidopa/levodopa and it is available in generic form. Pharmaceutical companies spend millions of dollars developing and testing new drugs in exchange for a patent that gives them a period of exclusivity. (Side Note: Parkinson’s effects roughly 1 in every 100 people and therefore, carbidopa/levodopa is on the Word Heath Organizations’ list of essential medications.)

So how did this get developed? Simple, the Michael J Fox foundation paid for it to be developed! The Michael J Fox foundation provided Citiva now Acorda with two grants totaling $1.3 million

"...Inbrija exists only because of the efforts of the Michael J. Fox Foundation, which Fox founded in 2000. What's more, it's the first drug to be approved for treatment in which the Fox Foundation played a significant role in both the approach and the funding." (Allison Boiles, Bloomberg, January 23, 2019)

This man and his foundation are amazing! 

"In its 18 years, the foundation has raised -- and spent -- over $800 million. The scientists who have received Fox Foundation funding have made serious advances toward understanding what causes Parkinson's. Once a research backwater, Parkinson's research is now something scientists are eager to be involved in, thanks to the foundation. The Fox Foundation has become the fulcrum on which Parkinson's research pivots."  (Allison Boiles, Bloomberg, January 23, 2019)

Another post is coming soon. Thank you for reading!

Clinical Trials For Two New Possible Treatments, July 24th, 201

I thought that this would be a short post with an update on my nonscientific study of medical marijuana dispensaries in the NYC area and the first email I sent only minutes after receiving my diagnosis in 2015, but so much has happened in the last few weeks. 

This blog post, therefore, is a part of the "over-sharing" that I am often criticized for doing too much or too little of, part review and part update on new research.

Please read on.

Two New Possible Treatments!

Both of these new research studies could result in treatments that slow or stop the progression of Parkinson's disease!

The Parkinson’s Pill that Cools Down The Brain!

Researchers at the University of Queensland hope to stop the progression of Parkinson's disease by treating inflammation! They believe that this treatment could slow the progression of disease or, “...halt it in its tracks...”

 
From The NEWDaily

According to Dr Woodruff, University of Queensland (UQ), "Parkinson’s disease, is characterized by the loss of brain cells that produce dopamine, a chemical that co-ordinates motor control – and it’s the loss of dopamine that has been the focus of treatment. But it is also accompanied by this chronic inflammation that occurs as an immune response gone haywire...  ...Inflammation is activated in our cells by complex proteins called inflammasomes…."  …

Dr Woodruff and his team found that the immune system causes the NLRP3 inflammasome to light up in Parkinson’s patients, with signals found in the brain and even in the blood.

The molecule MCC950, given orally once a day, in experiments with mice, blocked NLRP3 activation in the brain, prevented the loss of brain cells and resulted in improved motor function.

“We have taken an alternative approach by focusing on immune cells in the brain called microglia that can clear these toxic proteins…   …"With diseases of ageing such as Parkinson’s, our immune system can become over-activated, with microglia causing inflammation and damage to the brain.” said UQ Institute for Molecular Bioscience researcher Professor Matt Cooper.  

Human trials are scheduled to begin in 2020

This 90 second video explains it all:

 TheSPARK Study 

According to the pharmaceutical companyBiogen: 

The SPARK study is for people who have been recently diagnosed with Parkinson’s disease and are looking to take a proactive step in their care. We are evaluating an investigational drug to see if it may offer patients a way to potentially treat Parkinson’s disease in its earliest stages.

One of the hallmarks of Parkinson’s disease is the presence of clumps of proteins that occur within the nerve cells in the brain, called Lewy bodies. Researchers believe that the molecule alpha-synuclein may potentially play a major role in the formation and development of these harmful Lewy bodies and, by extension, Parkinson’s disease progression. The investigational drug is designed to attach to alpha-synuclein molecules and is being studied to see if it may prevent them from causing damage.

Please share with friends and family members as participants are needed  

July 24th, 2015 @105pm 
The above date and time was minutes after my diagnosis. I left the NYU movement disorders center, wrote and sent this message. Over three years later, the disease really has not progressed. I will let this email stand on its own.

Dearest Kate,

The following is good news:

I have been diagnosed with "garden-variety Parkinson's disease."  This is good news because the other options for patients with my symptoms are not as good.  

More good news:

The chances of this being passed on to Ocean are slim to none.

I will never be as bad as Michael J Fox is now.

I am one of the lucky ones.

I should never suffer any cognitive impairment.

I have found an excellent doctor who spent over two hours with me today.

I should respond very well to the medication will be on Azilect, which is the mildest medication for parkinson's disease currently available.  Please avoid researching this drug on the Internet as most negative side effects that are associated with the former version of drug.

Within weeks of taking this drug, my current symptoms should go away!

I am an excellent candidate for surgery. The surgery for Parkinson's is "deep brain stimulation", but this will not be needed, if ever, until further down the line.

The rumors circulating about medication wearing off are bullshit, though my medication will need to be adjusted and changed.

Lifestyle changes:

Maintain and or increase my weekly exercise.

I have chosen to go to NYU for physical therapy, which may mean altering our schedule a bit. This is going to be a pain in the ass!

I feel relieved and I am very happy right now.

I love you with my whole heart.

Jack

That is all for now.

Thank you,

Jack 

Two New Promising Research Articles & A Short Story

This months post is merely 2 promising research articles and a short story.
Enjoy...

New Research Study Indicates Diet May Slow the Progress of Parkinson's Disease

New research study indicates that a diet high in protein and green leafy vegetables, low in sugar, fat and carbohydrates significantly increases the quality of life for Parkinson's patients. Fifty percent of the sample study (n=2) indicated an increase quality of life and feeling of well-being of over three points on a 10-point scale.

After being on the diet for just over three months 50% of the samples study reported feeling remarkably better, lost weight, gained muscle and lowered cholesterol levels. The other 50% of the sample indicated no significant improvement in their quality of life, neither gained nor lost weight and had no effect on their muscle mass or cholesterol levels.

The study is not without limitations. Other than the small sample size one research participant admitted to being, "a junk food junkie" who ate three out of his four meals daily at local fast food establishments. Another subject, as self-reported reported vegan, indicated no change in his overall health. In addition, the title of the research study may be slightly misleading.

Lead researcher, Milton Teagle reported that research already underway shows that other minor lifestyle changes have significantly improved the quality of life of Parkinson's patients. "After seeing such significant results with just a change in diet, the research team decided to try other minor lifestyle changes in research participants. In one study in which the research is already completed, we found that dancing to 1950s music significantly increased perspiration levels of patients." Other areas of Teagle’s research which have shown promise are having sex with a model, receiving large cash gifts and driving an expensive convertible sports car down the Pacific Coast Highway.

This study published in January 2018 Journal of Perceptible Research and sponsored by the Vegetable Growers of America.

New Research Study on the Impact of The Excessive Use of Medical Marijuana on Parkinson's Patients Proves to Be Inconclusive

Lead Researchers Calvin Cordozar Broadus & W. Hugh Nelson appeared puzzled today when they reported on the inconclusive results of their double-blind, longitudinal study of the effects of excessive marijuana on Parkinson's patients.

At a press conference today, Broadus and Nelson appeared disappointed to announce that the results of their two-year, longitudinal study proved to be inconclusive. In this study patients were allowed to vape (20 THC to 1 CBD) as much as they wanted throughout the day. Researchers expexted to find decreased levels of reported pain and anxiety, increased appetite and overall longer sleeping patterns.

When asked why the results were inconclusive Broadus stated, “I think it was due to the use of an outdated Scantron sheet for self-reporting results.” Patients met monthly at various locations and were given Scantron sheets to report changes in sleep patterns, pain and anxiety levels. Nelson stated, "I have never seen anything like it. The research subjects did almost anything other than a fill out the Scantron sheet” Subjects reportedly ignored the Scantron sheets altogether, played connect the dots or shaded in the circles to make creative designs.

In good news, all 200 research participants have signed up for the follow-up study.

The study was sponsored by The Chamber of Commerce of Humboldt Count CA & Published on hightimes.com

Drawing The Battle Lines: A Short Story

No one dies of Parkinson’s disease, but some die of related complications. A percentage of my brothers and sisters die by choking on their food, falling and freezing and getting by hit by a car. While the progression is slow and my prognosis is good, part of me fears these possibilities, no matter how slim their likelihood.

Of course, I fear a loss of quality of life and how this may affect my family and friends. What I also fear and absolutely will not abide is someone saying something along the lines of, “After a long and valiant battle, Jack finally succumbed to Parkinson’s disease...” This is a battle I will never lose. 

Somewhere in my mid-thirties, a terrorist organization known as alpha synuclein and its evil Parkinson’s-causing allies began their attack by secretly infiltrating my body. The results of this sneak attack were the loss of my abilities to smell and write, as well as a significant drop in the volume of my voice. (Side note: I must point out that I do not mourn this change in my voice as I have talked far too loudly for far too long. In addition, there is a benefit to this symptom: people now lean in, put their hands on my shoulder and really connect and communicate.) Along with my family, friends, doctor and other allies, I drew the battle lines at this point. Exercise became a strong ally and helped to hold back the enemy. Then, in a move my foe never saw coming, I formed an allegiance with big pharma and took full advantage of its endless resources.

For now, an armistice has been called and Parkinson’s is not advancing. I am temporarily healed but not cured. Every day that my allies and I hold back the enemy is another day that doctors, researchers, pharmaceutical companies and patients have to find a cure. The clock is ticking, but organizations like the Michael J. Fox and Parkinson’s Foundations are fighting for me and all my fellow parkies. There is hope.

The worst case and unlikely scenario is, of course, is that the enemy will cause me to die of complications related to Parkinson’s. What if alpha synuclein and its allies come for me in the form of powerful monsters, vampires ready to suck the last drops of dopamine from my body? What if these hideous black and gray monsters, dripping with slime, surround me, covering the floor and slithering up the walls and ceiling? Once they think they have me surrounded, however, I will vanish, leaving only an old fashioned reel to reel recorder when the terrorist press play they will hear:

Dear Parkinson’s Disease,

“You have lost and there will be opportunity to surrender. Fortunately for me, you forgot what the war was about. While you slowly attacked my body, I was busy enjoying my life, being a father, grandfather, husband and friend. I had a good quality of life and enjoyed a successful career. I danced, boxed, swam, loved and laughed. While I accepted your presence, I never lived in fear. I volunteered, contributed to articles and took part in research studies right under your very nose! You also failed to remember that you did not enter my body genetically and cannot invade future generations. I can see my legacy; where is yours? Is reality beginning to set in? Your host lived a long, full and happy life and now, you have no home in which to survive. This message will self-destruct in 5, 4, 3, 2, 1...”

Prologue

All diseases are terrorist. They secretly enter our bodies and wreak havoc. The secret to defeating a terrorist organization is not to wipe them out or destroy them, but to keep them from accomplishing their mission. If you live for today and do not allow the invaders to terrorize you will have won. The best part is that is a battle you will enjoy fighting!  

 

April is Parkinson's Awareness Month!

In this Post:

Understanding PD, Yoga, Pedaling for PD, Another TV Appearance 

Special Thanks

Thank you for reading this blog. I do not mention often enough how much I appreciate those of you that take the time to read my posts. This post is mostly about my appearance on Disabilities Redefined and Julia Greenberg's epic trip to raise money for the Michael J Fox Foundation.

April is Parkinson's Awareness Month!

Parkinson's Disease can be difficult to understand. People often indirectly ask me (or hint around at), "Do you have cognitive impairment?" The answer is no, but the most important thing to understand is that no two people with Parkinson's disease have the same exact symptoms. The video below is the best one that I have ever seen when it comes to defining the disease and its symptoms.

Yoga

Okay, I have known for quite some time that yoga is extremely beneficial for those of us with PD.  An article by Beth Spindler on the Yoga International Web Site really spells it out.

According to the American Parkinson Disease Association (ADPA), yoga therapy has been shown to visibly reduce tremors and improve the steadiness of an individual's gait.

Yoga is one of the most beneficial complementary therapies for Parkinson’s disease (PD), helping to increase flexibility; improve posture; loosen tight, painful muscles; build (or rebuild) confidence; and, through these benefits, enhance quality of life.

What type of Yoga?

Practices that involve sound (chanting, playing, listening, and moving to music, singing, drumming, and kirtan). Music therapies can be effective in gait training by providing a steady rhythm for gait and stride. Simple rhythmic movements around a room, or shifting from one foot to the other and alternating arm swings while sitting in a chair are staples of PD yoga classes. Movement with music has also been shown to improve endurance, range of motion, strength, and hand coordination. These effects are enhanced when the movements cross the midline of the body (think eagle arms or self-hugging, touching opposite ear, or crossing hand to opposite knee in a seated twist) due to the brain hemisphere coordination required in these action...

Now all I have to do is find some time to spend with my beautiful wife, Kate Lynch, a wonderful yoga instructor, working on my practice!

Racing Heart Rate

A few weeks back, my heart rate went up over 100 bpm. At this point, my GP and Movement Disorder Specialist believe that it is mostly due to stress.  I have an appointment with the cardiologist on April 18 and if it is anything serious, details will be in my next blog post.

 

Disabilities Redefined With Dr Truitt Vaigneur

It was my pleasure to be a guest on Disability Redefined with Dr Truitt Vaigneur. 

Truitt is a great host and wonderful person. This show is truly representing people with disabilities in a new light. Please watch.

Pedal For PD

52 Days, 3838 miles, one mission; raise funds for the Michael J. Fox Foundation! Julia needs your help to raise funds to cover the cost of this trip. My helmet is off to her for taking this journey for all of us with PD!

From Her Website:

This year I am proud to play a part in the fight against Parkinson’s disease. As a Team Fox member I will be embarking on a cross country biking challenge. The ride covers a total of 3,838 miles from San Francisco, CA to Portsmouth, NH over the course of 52 action-packed days and, if you know me, you know that I could not be more excited. A life-long athlete, medical student, and outdoor enthusiast, I have come to find myself enamored by the power of movement to heal mind and body alike. My goal in embarking on this cross-country adventure is to share my passions for neuroscience, community health, and movement and the outdoors in order to help bring physical activity to the forefront of preventative medicine in neurodegenerative diseases - particularly for Parkinson's Disease (PD). 

Over five million people worldwide are living with Parkinson’s disease (PD) — a chronic degenerative neurological disorder whose symptoms typically progress from mild tremors to complete physical incapacitation. In the United States, 60,000 new cases of PD will be diagnosed this year alone. While the average age of onset is 60, an estimated five to 10 percent of people with PD experience onset at age 40 or younger.

The scientific findings regarding the neuroprotective effects of exercise are certainly remarkable, but I encourage you to place even greater weight on the first-hand accounts of individuals living with Parkinson's Disease - it is these personal experiences that bridge the gap between the nitty-gritty, objective scientific facts and the mind-boggling - I dare to say miraculous - power of movement. 

Ride Julia Ride! 

Thank You For Reading!