December is the time to gather with friends and family and celebrate the holiday season. At The Parkinson Alliance, this December also marks the one year passing of our beloved co-founder, Margaret. As we look back on this year, we take pride in having carried on Margaret’s goals for the Alliance.
Margaret devoted herself to educating the Parkinson’s community about anything that may improve the quality of life and to raising money to fund Parkinson’s research. These core principles remain at the heart of The Parkinson Alliance. Under the leadership of our President and CEO, Carol Walton, the Alliance continued participating in educational seminars and area events to empower the community, growing the number of participants in our patient-centered research, and working on various Team Parkinson events to raise money for research.
We also funded research grants, including a pilot study expansion study to help clarify the relationship between walking and talking and to develop new dual- and multi-task interventions to directly benefit Parkinson’s patients. We also funded a project that assesses the degrees to which stimulation frequency parameters in deep brain stimulation affect gait. You can read more about these grants here.
In addition to the Parkinson’s Unity Walk held in April, throughout the year we held Team Parkinson events, such as Team Parkinson at the Los Angeles Marathon, Team Parkinson 5K & Fun Run at Carnegie Center, and the Food, Wine & Maybe Tuscany.
John Ball and his amazing wife, Edna, of Team Parkinson were featured in the LA Marathon’s “35 Reasons” video series. We encourage you to watch this very inspiring video about his commitment to the Parkinson’s community and why he runs.
With your support, we have accomplished so much in 2019. We are proud to continue to honor Margaret’s legacy and push forward on the road she started some two decades ago. We wish you, your family, and friends all the best this holiday season.
On Tuesday, October 24th, The Parkinson Alliance held its 3rd annual Food, Wine & Maybe Tuscany event in Lawrenceville, New Jersey. While enjoying an evening of food and wine, attendees were also treated to an inspiring talk by guest speaker, Bret Parker.
Bret is a 51 year old attorney who is currently the Executive Director of the New York City Bar Association. He was diagnosed with Parkinson’s at age 38. Initially he kept the diagnosis, which he thought to be some sort of carpal tunnel issue, to himself. He wrestled within. On the one hand, he didn’t want potential pity or prejudice. On the other, he wanted to be open with friends and family and wanted to get involved with raising awareness and money for a cure. With his symptoms not impacting his day-to-day life, it seemed there was no need to worry anyone. Silence was best. Each year, as he hid symptoms such as hand and leg tremors, stiffness, and slowness in movement, he contemplated when he would break his silence. Then, his young son asked “Daddy, why does your hand shake?” With tears, he revealed his condition to a close few.
In 2012, five years after his diagnosis, a good friend who knew of Bret’s condition was running 50 miles to raise money for 10 charities. His friend asked Bret to run a 5-mile section of the event with him to raise money for the Michael J. Fox Foundation for Parkinson’s Research. He realized his friend’s decision to raise money inadvertently gave him the needed push to finally reveal his condition. He broke his silence by writing a blog post for Forbes — his “coming out” of sorts — and asking those in his world to read it. “As I contemplated how I would finally reveal my condition, I realized that my secrecy was not protecting me at all. Rather, it was my way of denying that I have this chronic disease and controlling the one thing I could control – how many people know I have Parkinson’s. … By keeping a secret I have accomplished nothing. Not only that, I have squandered opportunity: opportunity to deepen relationships with friends and family; opportunity to rally support for Parkinson’s research; opportunity to confront my fears and educate people; and opportunity to help others like me who have been affected by this disease or by other diseases that they feel they must endure in silence.”
Since that time, Bret has participated in one event per year to raise awareness and money for Parkinson’s research. To date, he has raised over $600,000! He did marathons, a triathlon — quite impressive considering water terrifies him, a mountain climb, and raised some $50,000 during a sky dive. Then, after reading about a British school teacher, Ted Jackson, completing The World Marathon Challenge, Bret decided if Ted could do it, Bret could do it.
Early 2018, Bret flew to Cape Town, South Africa to begin his journey in the World Marathon Challenge. The World Marathon Challenge is billed as a “logistical and physical challenge to run seven marathons on seven continents in seven days.” In other words, an extremely difficult event for anyone, let alone a 49 year old man with Parkinson’s. Competitors are scheduled to run the standard 26.2 mile distance in Antarctica, Africa, Australia, Asia, Europe, South America and North America within 168 hours, or seven days. The event began at the first marathon location in Antarctica. From there he returned to Cape Town (Africa) to do his next marathon, then Perth (Australia), Dubai (Asia), Lisbon (Europe), Cartagena (South America), and finally Miami (North America). Listening to Bret, the audience shared laughs and tears as he described his highs and lows. We learned his marathon in Antarctica was one of his best, finishing in 6 hours and change despite dropping his bag of pills and his iPhone not playing music after the temperature hit 20 degrees F. Through tears, we also heard about how when in Lisbon, Bret could just about finish due to severe blisters on his left foot. He told us Ted Jackson, the very school teacher that inspired him to join the Challenge, walked with Bret for the last four miles of that marathon. “We called ourselves Team Hold the Plane.” He talked about a t-shirt he once spotted that said “Do Epic Sh*t.” That phrase resonated with him, and he decided one either makes the decision to do epic things or not. But he also acknowledged that for people with Parkinson’s, just getting out of bed, fighting through depression, and taking the next step is epic. “Take it day by day,” he encouraged, “Be epic.”
We were honored and inspired by Bret’s story and thank him for being our guest speaker at this year’s event. We also thank everyone who attended and supported the 2019 Food, Wine & Tuscany event and hope to see you again next year. We also invite you to listen to Bret talk about his journey in the video below.
Dyskinesias are uncontrollable involuntary movements that are different from tremors. For people with Parkinson’s, it is a common experience that for some can be mild while for others can routinely negatively impact daily functions such as speech, chewing, swallowing, dressing, handwriting and other quality of life issues. The Parkinson Alliance, in its latest patient survey, addressed dyskinesias. The objectives of the survey were threefold — to learn about dyskinesias’ impact on daily function; to understand the relationship between dyskinesias, emotional well-being, and quality of life; and to provide general comments about and recommendations for treatment related to dyskinesias. The survey was taken by 935 individuals. The average age was 71, with an average disease duration of ten years.
Jeffrey Wertheimer, Ph.D., ABPP-CN, our Chief Research Consultant and Chief of Neuropsychology Services at Cedars-Sinai Medical Center, Los Angeles, California, assisted us in creating and analyzing this survey. Examples of comments include:
“Dyskinesia makes it harder to concentrate on what needs to get done ‐‐ writing, using computer, choosing words ‐‐ it is an extra distraction especially when there are time constraints and more than one or two projects that need to be done.”
“Dyskinesia is very annoying and uncomfortable. I feel I have to explain why I am jumping all over the place to strangers. When I am home I twist until my shoes and socks come off my foot. When I lie down to rest I sometimes move so much I need to get up.”
When Margaret Tuchman began creating these surveys, her goal was to provide a way to hear and validate the voice of the person with Parkinson’s. This latest patient-centered survey, which is now complete, carries on her tradition. We invite you to download, read, and share it with your doctors and loved ones. Download the complete survey here, free of charge.
Please also consider participating in our current survey, which is on urinary symptoms and Parkinson’s. The data collection for this survey will conclude on December 1, 2019. You can take the survey online here.
John Ball, who was diagnosed with Parkinson’s over 30 years ago, has a favorite saying: “You can’t make a difference if you don’t show up.” This year marked the fifth time that he (and the third time for his wife, Edna) showed up and represented Team Parkinson at the World Parkinson Congress (WPC), this year held in Kyoto, Japan. The conference showcases a wide spectrum of developments affecting the Parkinson’s community.
I recently talked with Edna about their experience, starting with their 12 1/2 hour flight from Los Angeles International Airport to Osaka Kansai Airport in Japan. Edna explained, “We flew Japan Airlines on the suggestion of friends who live in Osaka. Trying to figure out how to get the correct bus tickets to get to the station closest to our friends’ home was a challenge. All the ticket machines only had Japanese instructions on them. We were lost, but luckily a helpful gentleman understood what we needed and helped us buy the right tickets. Our stay in Osaka was great and our friends from Tokyo came to see us there and also to travel with us to Kyoto.”
John and Edna arrived a day early at the The International Conference Center Kyoto, host of the 5th WPC, to help with the installation and set up of the “Soaring With Hope” for PD project. “It is the brainchild of three wonderful young onset women from our support group back in California” John and Edna were two of the many volunteers who helped display some 15,000 folded cranes, from 39 countries, suspended from traditional Asian umbrellas creating a meditation garden. Each crane carried a message of hope. The founders, Naomi Estolas, Clara Kluge and Amy Carlson, stated that in the Japanese culture, 1,000 cranes represent hope and health, which is their “tenfold wish for the Global Parkinson’s Community.” Edna said, “The display was glorious, and we were so proud of these ladies and all the work they did, and so honored to be able to help.”
Soaring With Hope for PD
“The Opening Ceremonies in the evening were wonderful and included song, dance and Taiko drums. Very dramatic! The keynote speaker was Lyndsey Isaacs, widow of the late, great Tom Isaacs, who was a global force for Parkinson’s disease. Also, each morning there were special awards given to dedicated people who have contributed for years to the well-being of the Parkinson’s community. Their stories and speeches were so inspirational.
On Wednesday all the lecture sessions and so many other activities started early in the morning and went until 6:30pm. The lectures were divided by levels of scientific detail and depth, so that John could choose the more complicated topics and I could choose those I might understand more easily. I also went to a couple of care partner sessions, which to be honest, I could have led myself! Maybe next time I’ll ask to be a presenter! We learned a lot about the science of PD, alpha-synuclein, the prospects for personalized medicine in PD, nutrition, falls, the gut, medication, new treatments and procedures, and more. I even got a massage one day! There was art, the beautiful crane installation, movies, ping pong, dance, boxing, Taiko drumming, and more. John had his book on display in the Book Nook, and had time scheduled there to speak with people and answer questions. Several people ordered the book, so that was rewarding.
We saw many old friends from all around the world, and we made many new friends from around the world as well—from Australia, Scotland, and even as far away as Nepal!
And as with each Congress, there was much anticipation on the last evening as we waited to hear where the 6th Congress would be held. We were not all disappointed to hear that in 2022 we’ll be heading to Barcelona, Spain! We hope to see many old friends there and make new ones too. We hope many of you who read this will join us for an exceptional experience of community, learning, and most of all, hope.”
We thank Edna and John for not only representing Team Parkinson in Kyoto but for continually showing up and making a difference in the PD community.
Last year Dr. Jill Farmer, a neurologist and movement-disorder specialist, gave a lecture on medical marijuana (MM) and how it may treat some Parkinson’s Disease (PD) symptoms. She also prescribed it to Margaret. In NJ, to obtain MM a physician must certify that you have a “qualifying debilitating condition.” While the NJ law currently does not include Parkinson’s disease as a qualifying condition, chronic pain and migraines, which Margaret suffered from, are.
After getting her prescription, Margaret asked if I would pick up the MM for her. While the request sounds easy enough, having a prescription does not mean you can simply head to the nearest pharmacy to get it filled. Instead, Margaret had to first complete an application with the state to obtain a Medical Marijuana Patient Identification card. I also had to complete an application (including a criminal background check and fingerprinting requirements) to obtain a Medical Marijuana Caregiver Identification card. Each state in which medical marijuana is legal has its own requirements. In NJ, the information is here.
With caregiver card and prescription in hand, it was time to visit Breakwater Alternative Treatment Center, the nearest “Alternative Treatment Center” (ATC), which are the only facilities in NJ allowed to sell MM. All new patients (or their card-card-carrying caregiver) are required to attend a first time appointment. Since I did not want to wait more than a month for a private appointment, I selected a group appointment.
The ATC was located in an area populated with many large warehouses. The small sign and non-nondescript area made it easy to miss if you weren’t looking for it. Upon walking in, I found a small, plain, white room, some chairs, with a receptionist seated behind a window. The door from the reception area to the dispensary was heavy and shut tight. When it was my turn to enter, the door unlocked. I walked in and was surprised to see a much larger, well-lit area alive with activity. There were many people looking through long glass counters filled with various products, questions were being answered, and people patiently waited on a small line to make their purchases.
The health consultant took me to a windowed-private office on the outskirts of the main dispensary area where we waited for another patient who was part of our meeting (the “group appointment” was me and one other person). After she arrived, Dani, our consultant, gave an overview of how things worked. She gave us printed material that explained the different types of products offered, such as “buds” for smoking and “concentrated oils” for direct application or “vaping.” She also gave us a “current menu” of products with names like Kush, Blueberry, Lemon G, Bubble Gum, ChemStar, Grape Ape, and others. We learned that these funky sounding names actually represented various strains of medical cannabis carefully grown and blended in their state-of-the-art facility (in other words, not the same as “street pot” where one has no idea what the blend may contain). She also mentioned that death from overdose of MM is virtually non-existent.
We learned that there are three main ways of MM consumption that Breakwater ATC offers: smoking, vaporizing, and tinctures. Smoking is the most common form and delivers an almost immediate response. Tinctures (or oils) can be taken under the tongue with an eyedropper and absorbed through the mucus membranes of the mouth. The effect generally takes more time, anywhere from five to ten minutes or even longer, depending on your metabolism. Dani said vaporization is most recommended because it has the immediate effect like smoking but without the health risks. She also explained that some strains could help with issues other than chronic pain, such as constipation, joint inflammation, depression, anxiety, nausea, and vomiting.
In addition to Margaret’s qualifying conditions, she also suffered with insomnia at night but could get very sleepy mid-day. Both important for the health consultant to know. We also discussed Margaret’s migraine headaches. After reviewing options and Margaret’s Parkinson’s medications, Dani recommended that Marge first start with oils. We selected two: one for pain relief, but also helpful for fatigue with an energizing side-effect for use during the day. The other for pain relief, but better to take in the evening as it produced a sleepy, sedative side-effect. Dani recommended starting with one oil. Then, after it is tolerated, to add the second. She explained the dosage and how to use the measured dropper. After Amy told Dani about her debilitating headaches, Dani explained that a drop of oil could also be massaged directly onto the temples to help lessen and even break a headache.
Dani also went over what seemed like common sense direction, such as using MM only at one’s residence and not in public places. She explained MM should not be shared or redistributed, and it should always be kept in its original labeled package. However, I was surprised to learn that you cannot transport MM over state lines, even if that state allows legal MM. In other words, if you go on vacation outside of your state, you cannot take your MM along with you.
Armed with information, Amy and I both headed to the dispensary to make our purchases. Because it was filled with people and we needed to wait our turn, we were able to listen to additional answers to questions and comments. The atmosphere was relaxed and friendly. Amy and I were also able to chat. Amy said she initially felt embarrassed about getting MM, fearing what others would think of her. She said, “I’m looking around and seeing people who are no different than me. We all just want to feel better and are willing to do what it takes.” Another woman, overhearing her, said “I use to feel embarrassed too. But, believe me, it is a godsend.”
I then delivered the oils to Margaret. She wanted to first try the evening oil to help with pain and possibly get a better sleep. Initially, she did get a better sleep, sleeping straight through the night without waking several times as she generally did. However, then she started sleeping too long and being more drowsy upon waking than she wanted. I called Dani, and she explained MM can remain in the system for 6-12+ hours, depending on your metabolism, and she suggested cutting back the amount and taking it every other day. We did this. Margaret was very pleased that her sleep improved, and she was very optimistic about using MM. The goal was to introduce the second oil, and eventually to try vaping so that she could get the immediate needed effect whenever needed. Unfortunately, that was not to happen. While Marge’s experience with using MM was sadly cut short, she did want the Parkinson community to know that she fully supports it use, believing it is another tool in the arsenal to help improve qualify of life.
If you are considering medical marijuana, please first discuss it with your doctor. Additionally, you can watch Dr. Jill Farmer’s complete lecture on medical marijuana on our blog here.
We also invite you to share your MM and Parkinson’s experience with us.