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!

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...

Friendship, Happiness, Needs and Wants

Friendship
Sometimes, as you get older, it seems more challenging to maintain friendships. Your family takes priority and your career and daily life get in the way. I was discussing this with two separate friends, David and Don, these last two weeks via messenger, phone and text. What it comes down to is that a real friend is someone you can call after years of not seeing them and pick right up where you just left off.

Case in point, two weeks ago I needed some help and reached out to Don after not seeing him for seven years. I texted him and today, he came to Manhattan via Lake Hopatcong just to help me out. We met in Greenwich Village ate lunch at John's Pizza and caught up. Pretty simple ask a friend for help and there they are. Thanks Don.

Happiness
As Don and I walked down Christopher Street (which I have not done in years), we talked about happiness and quality of life. We agreed that happiness can be illusive and you may have to work a little to achieve it. Or not work, in some cases. It may mean starting your own company or taking a job that you love, even if you make less.

Needs and Wants
As we walked, I realized there was not much I wanted and very few things that I actually needed. I did not even need to take a selfie with Don for Facebook. After all I have the memory. Funny, how spending time with a friend can bring clarity. We parted at the Christopher Street Path station after a few hugs. I hope to see him soon.

If the above is trite, I apologize, but there has been so much hate in the media lately, I felt it necessary to post something positive.

Sarah Silverman
I have such respect for Sarah Silverman. A troll on twitter was harassing her, so she contacted him in an attempt to see if something was wrong. Imagine if we all did this when someone was mean to us? If we simply said something like, "I am sorry if I did or said anything to offend you, but are you OK? Is something wrong? In the end, it seems he had severe back pain, needed surgery and had no medical coverage. What did Sarah do? She paid for the medical procedure! Why isn't this getting more media attention? Remarkable!

Parkinson's Disease
This is a blog about Parkinson's right? Tomorrow will be my third Stop-PD Boxing class at Gleason's Gym in Brooklyn.  Not much to explain here, other than it is wonderful!

Dedication
Todays' blog entry is dedicated to friends Don, David, Cindy and Sam.