Sunday, February 24, 2019

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


“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!"

Saturday, February 23, 2019


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!

Friday, November 9, 2018

Clinical Trials For Two New Possible Treatments, July 24th, 2015 @ 1pm & Curaleaf

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...”
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.


This is an update to my post on medical marijuana.  Curaleaf in Queens was not included on that post, but it should have been. Currently they offer the same product line as PharmaCannis at the same prices. The bonus is you will not need to go to Bronx! As an added bonus, they text you with information on upcoming sales & they have a buyer loyalty program! Soon Curaleaf will have their own product line, but they promise that the prices will not be drastically different. 

The place has a nice look, similar to the Apple Store, not too slick like MedMen but not like a pharmacy either. The staff is friendly and they do not take themselves too seriously.

My research indicates that this is the best dispensary in the NYC area.

Look out Curaleaf: Citiva opens in Brooklyn between December 1st and the 15th! They promise to carry many of their competitors products at the same prices. Conveniently located across the street from the Barclays Center and accessible via the G, 2, 3, 4, 5, B, D, N, Q & R.

Citiva will be reviewed in January 2019.

That is all for now.

Thank you,


Wednesday, July 18, 2018

Most Important Podcast To Date & More On Medical Marijuana

Ray Dorsey


I have referenced  Ray Dorsey from the University of Rochester Medical Center in prior blog posts. He is clearly one of the most influential people in the Parkinson's community. His comparison of Parkinson's disease to a pandemic is illuminating especially when you consider the growth in the number of diagnosed patients.  On March 13, of 2018, the Michael J Fox Foundation featured Dr. Dorsey on one of the  most important podcast on Parkinson's disease to date. Not only will you have the opportunity to hear about the growth of Parkinson's disease, you will also learn about the lack of treatment and inability to access even the most basic of Parkinson's medications worldwide. Be prepared to be very upset when you hear about paraquat. Paraquat has been directly linked to Parkinson's disease and is a common herbicide used in the United States. Countries such as England do not allow the use of this herbicide but continue to produce it and exported to many other countries including the US. Please listen to this important podcast.

Medical Marijuana

Studies on the use of medical marijuana for Parkinson's disease have been mostly inconclusive and many, if not all have had an extremely small sample size. Medical marijuana may help with some symptoms such as anxiety, insomnia, tremor and dystonia, however, it is not recommended for patients with cognitive impairment. What follows is an extremely unscientific survey of five fellow Parkinson's patients. Discussions with these patients were augmented with an extensive web search and several phone calls. Due to the fact that laws and products vary from state to state, I will use New York as an example. The authors of this blog do not recommend the use of medical marijuana or endorse or receive any compensation from the dispensaries or medical providers listed.  Purchasing marijuana illegally is also not recommended. Finally, the use of medical marijuana impairs your judgment and you should never operate heavy machinery or drive under the influence of medical marijuana.

Discounts for bulk purchases, senior citizen, veteran and SSI status aside, medical marijuana is expensive. In some cases, up to twice the street value of the product. With states like Massachusetts and New Jersey moving towards the legalization of recreational marijuana, prices in New York may drop due to obvious reasons.

Product Types
The State of New York does not permit the sale of actual marijuana leaf (often refered to as flower) or edibles such as gummy bears, cookies and lollipops. The main products in New York are tinctures (drops administered under the tongue), THC pills and vaporizers (in some cases, a product similar to breathe spray is also available). The patients that I spoke with indicate that vaporizers are the most popular due to the fact that the effects gained by using them are almost instantaneous. Effects from vaporizers generally last anywhere from 2 1/2 to 4 hours, while the effects from pills and tinctures generally last anywhere from 4 to 8 hours.  A word of warning, anything you take orally may take up to 90 minutes to be effective. So DO NOT take a pill, wait 15 minutes and then take another! Unfortunately, vaporizers are probably the most expensive form of medical marijuana in New York costing roughly twice street value. The street value for a gram vaporizer cartridge is anywhere from $70 to $100 and 1/2 gram generally, goes for anywhere from $40-$60. None of the patients that I spoke with purchased tinctures or pills illegally, so I have no point of comparison. The patients I spoke with told me that the products that they purchased illegally were from California distributors & were still in their original packaging.

Where To Buy
After making several phone calls, checking on websites and talking with fellow patients it seems as though the best sources for medical marijuana in New York City are PharmaCannis and MedMen. Prices for pills and tinctures are roughly the same at both places, however, vaporizers are much more affordable at PharmaCannis. These are generally measured in milliliters while street prices and products from recreational facilities are generally measured in grams. There is no direct conversion between these two units of measurement, but PharmaCannis is the only facility in NYC that offers roughly a gram vaporizer cartridge at the equivalent of street/recreational prices.

There are many strains of medical marijuana available, but in general, Indica is used for night time/relaxation while Sativa is used for day time.  Both PharmaCannis and MedMen have nice facilities, but MedMen is certainly more conveniently located and also has better marketing and packaging. PharmaCannis will deliver if you spend $200 or more. It is important to note that there are many different combinations of THC to CBD. In general, the more CBD the less psychotropic effects that the medical marijuana will have on the patient. If you have no experience with marijuana a one-to-one blend is recommended. If you do have experience, however, the one-to-one blend may not get you high. Some places offer 20 to 1, 50 to 1 or 100 to one blends and while there is a significant difference between a one-to-one blend and a 20 to 1 blend, the difference between 20 to 1 and 50 to 1 or even 100 to 1 is generally insignificant. How can this be? It is simply because the ratio of THC to CBD is raised by simply reducing the amount of CBD while the actual amount of THC only increases by a small percentage.  All the other distributors I researched had prices so exorbitant that they cannot be recommended.

Getting Your NY State Card & Finding A Physician
Follow the simple directions on the New York State website on how to obtain a card. The biggest barrier to obtaining your card is finding a doctor to write the prescription. Manny friends and fellow Parkinson's patients have run into many unethical doctors who charge anywhere from $500-$750 for the visit needed to get the initial prescription. Keep in mind, that this visit has to occur annually.  Generally, avoid anyone who markets themselves as, “Pot Doctor.” Two of the patients that I spoke to both recommend Jennifer Zocca, who has availability, is a legitimate pain management doctor, takes most insurance and does not charge exorbitant fees.

While the jury is still out on the effectiveness of medical marijuana on Parkinson's disease, I hope that I have provided you with some insight into the products and processes related to its use. 

Please have a discussion with your Movement Disorder Specialist prior to using medical marijuana. If you do not currently have a Movement Disorder Specialist, GET ONE!

Please feel free to leave comments or contact me via this blog.


Wednesday, June 6, 2018

Two New Promising Research Articles & A Short Story

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

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

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...”

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!  


Monday, April 16, 2018

April is Parkinson's Awareness Month!

In this Post:
Understanding PD, Yoga, Pedaling for PD, Another TV Appearance And"Dude, Don't Bogart That Joint!"

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.

Okay, I have known for quite some time that yoga is extremely beneficial for those of us with PDAn 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.

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! 

Marijuana and PD: What Do We Really Know? 

A Webinar from the Parkinson's Foundation on Tuesday, April 17 @ 1pm.
There is a great deal of information and misinformation about the use of marijuana as a treatment for some PD symptoms. The expert briefing entitled: Marijuana and PD: What Do We Really Know?, will really help you get to the bottom of it. 

There is increasing interest in the Parkinson's patient and research community about the potential for cannabis-based products to treat PD. In this expert briefing we will review what cannabis is, how it works in the brain and why there is so much excitement about its potential in PD. We will then review animal and basic science studies suggesting some promise in treating motor symptoms and slowing the progression of PD. We will conclude by reviewing the evidence to date in human studies, suggestions for future research and practical advice for persons interested in trying cannabis-based products.

Research aside, after speaking to your doctor, you may wish to give this a treatment a try.  Even if the research does not prove that a treatment is effective, but you feel that it is working for you, stick with it!

Two of the main problems with medical marijuana here in New York is getting a doctor to prescribe it and being able to afford it. Please check out the New York State medical marijuana website. Very few doctors on the New York State list accept any type of insurance, even though New York State law requires that your insurance company pay for the visit. Some of these doctors are gouging patients for as much as $500 for the initial visit. Once you jump through the hoops and get your medical marijuana card, there is yet another hurdle for you to overcome; paying for it.   When it comes to vaping for example, dispensaries generally charge about $90 for 250mg and $180 for 500mg. In contrast, the street value in NYC of one full gram is anywhere from $80 to $100 and this same gram only costs $55-$70 in Colorado or California. New Jersey is all set to legalize recreational marijuana and a quick drive over the bridge or through a tunnel will soon save you about 50% on your purchases. My hope is that this availability will force the dispensaries in New York State to lower their prices to compete.

Thank You For Reading!

Monday, February 26, 2018

StoPD Boxing, Muscle Tightness, Anxiety & Montego Bay

This post is sort of stream of consciousness, but then again, my train of thought was always a roller-coaster! So here goes...

Stop-PD Boxing
Exercise is one of the two things (the other is Azilect) which show promise in slowing down the progression of PD. According to the Parkinson's Foundation Website:

"Exercise is an important part of healthy living for everyone. For people with Parkinson’s disease (PD), exercise is more than healthy — it is a vital component to maintaining balance, mobility and activities of daily living. Exercise and physical activity can improve many PD symptoms. These benefits are supported by research."

Regardless of the fact that the research is inconclusive, I exercise regularly and take Azilect.  My disease appears to be progressing at a snails pace, so I am sticking with both.

Back to Stop-PD Boxing.
If you can, imagine 3 minutes of boxing and plyometrics followed by a 30 second break repeated for 45 minutes (plus a 15 minute warm up) and you get a good idea of what Stop-PD boxing is. If you think that 1 minute of jumping jacks is challenging, try sandwiching them between two 1-minute intervals of punching combination on the heavy bag! The class is in  Gleasons Gym, which makes it feel like the real deal.

According to the Stop-PD website:

"The training sessions consist of a balance of cardio, strength training, stretching, bag work, calisthenics and core training.  Sessions will typically begin with extensive stretching and flexibility exercises, followed by 10 to 12 three minute “rounds” of rigorous exercises including fast-paced running, punching heavy bags, working speed bags, skipping rope, one-on-one punching exercises with a trainer, weight training and abdominal exercises.  Some participants, dependent of their level of conditioning and special disabilities, will be allowed to exercise on stationary bicycles and treadmills during parts of the workout sessions."

Anxiety and Stiffness/Rigidity and PD
My worst symptoms right now are Rigidity and Anxiety.  With rigidity, the muscles of my lower back and glutes lock up. Exercise helps as does stretching and meditation, but at times, it still gets to me.

"Rigidity—when your muscles are stiff and resist moving—is one of the primary symptoms of Parkinson's disease, affecting at least 90 percent of people with the disease at some point. It occurs when your muscles stiffen involuntarily."

With anxiety, I begin to play out worst case scenarios in my mind, my heart rate elevates and at times, I am paralyzed with fear. At first, I could tell myself that it was merely a symptom and it would go away, but now, I have real stress from work and it is difficult to tell what is real from what is being caused by PD.

According to the Michael J. Fox Foundation:

"When facing a diagnosis of Parkinson's disease, it is understandable to feel anxious or depressed. But mood disorders such as anxiety and depression are real clinical symptoms of Parkinson's, just as rigidity and tremor. In fact, at least half of all Parkinson's patients may suffer from clinical depression at some point during the course of their disease, according to some estimates."

Alternative Treatment
At the moment I am trying some alternative treatment, which works for about 2 to 4 hours and is best used in the evening before bedtime. It is just symptom relief, but I am sticking with it for now.

Montego Bay
The family and I just returned from Montego Bay. Several days at the pool and beach was great medicine. At one point, three days went by without any thoughts of PD! The sign of a great vacation, of course, always is when you ask, "what day is it?"

Well this post was certainly a hodge podge of different topics and links! To sum it up, anxiety and rigidity bad exercise and Montego Bay good!

Until next time...