Report: The Michael J. Fox Foundation Parkinson’s Policy Forum

Nancy Husari (third from left) at Dianne Feinstein's office
Nancy Husari (third from left) at Dianne Feinstein’s office

The Forum began with two days of educational panels where attendees learned about recent research advances and current policy issues affecting people with Parkinson’s, as well as their families and care partners. We also received training on how to build relationships with lawmakers through effective advocacy. A highlight was a breakfast appearance by Senator Cory Booker, whose late father lived with Parkinson’s. In his keynote speech, Booker underscored the importance of advocacy when he said, “I tell each and every one of you, what you do matters.”

On the final day of the event, advocates were scheduled to head to Capitol Hill for congressional meetings but the government shut down due to a snowstorm. Despite the storm, advocates made sure the Parkinson’s community was heard on Capitol Hill by contacting representatives through phone calls, emails, and social media. Some advocates recorded short videos and posted them to their legislators’ social media feeds. Although “Social Media Day” was unplanned, we suggested to organizers that they include it as part of the agenda next year because it was so successful.

Senator Cory Booker (left), Brooke Deputy (center), Nancy Husari (right)

Nancy was able to stay an extra day in Washington with some other Forum participants, and the group rescheduled meetings with staffers in Dianne Feinstein’s and Kamala Harris’ offices. The focus of these meetings was to succinctly tell our personal Parkinson’s stories and to conclude with three specific “asks.”

Nancy went to these Capitol Hill meetings with several PD advocates from other parts of California. The meetings began with staffers’ being asked if they knew anyone with PD and how much they knew about PD. This was followed by a short explanation about PD. The staffers she met were most interested in personal stories. One of the Forum participants, Amy Carlson, had a slideshow on her tablet to illustrate her life before and after her diagnosis, as well as, videos of her “off” times that illustrated that we don’t always look and feel as well as we may have when visiting Capitol Hill during our “on” times. Amy also included photos of people in her PD community who had passed away or were too disabled to come to Washington D.C. Nancy was able to add a few pictures to the slideshow to tell her personal story as well. The meeting was concluded with the group’s three “asks” as listed below and the staffers were provided with short versions in oral and written form:

1 – $5 million for the National Neurological Conditions Surveillance System. This system was authorized by the 21st Century Cures Act for the purpose of gathering comprehensive demographic information on people with neurological diseases, which is something scientists currently do not have. This lack of core knowledge makes it difficult to assess potential environmental triggers and other patterns of disease. The system will provide scientists with data to refine and target their research, which could lead to better knowledge of complex neurological diseases, new treatments, and cures.

2 – $20 million for the Department of Defense Parkinson’s Research Program, which studies how events in the line of service, such as toxin exposure and traumatic brain injury, may lead to the development of Parkinson’s in our nation’s service members and veterans.

3 – At least $38.4 billion for the National Institutes of Health (NIH). We urgently need a cure for Parkinson’s. NIH funding can help us get there. The agency supports approximately $169 million in Parkinson’s research, and its work is vital to the development of treatments to slow or stop the progression of PD.

Upon returning to the Bay Area, Nancy contacted Barbara Lee’s office in order to continue advocating for Parkinson’s funding here in the Bay Area. Brooke participated in an online webinar to learn more about local advocacy strategies.

If anyone in the PD community (People with Parkinson’s and supporters) wants to get involved with advocacy work, a good place to start would be to write to your Senators and Representatives and to include the story of your personal connection to Parkinson’s and the three “asks” listed above. As mentioned above, we would also like to form a group for local face-to-face lobbying. You should also consider going to the 2019 PD Forum next March. It’s an important time to get involved because Congress is currently negotiating funding for the fiscal year 2019. They just passed the 2018 budget, which includes a $3 billion increase for NIH for this year.

For more information and/or to join in advocating for PD, please contact Brooke at brookedeputy@gmail.com and/ or Nancy at nhusari@gmail.com. They look forward to working together and with others from the PD Active community for PD.

Excerpt: Anna Rabkin’s Memoir

From Krakow to Berkeley: Coming Out of Hiding – Excerpt from pages 305-306:

Anna Rabkin Memoir Book Cover“Marty was relieved to know why he had not been feeling his usual energetic self, and threw himself into learning everything he could about PD. He started an exercise programme that included water aerobics, yoga, movement classes, and workshops developed by the Mark Morris Dance Company for people with movement disabilities.  I accompanied him to conferences where we tried to keep up on the latest research on neurological diseases and medical advances.  He became a founding member of a model patient-based, all volunteer support organization, PD Active. As he did wherever he went, he made many friends among his fellow “Parkies”.”

 

~ Until July 21, 2018, you can obtain a 20% discount from the publisher, VM books. Use the code RABKIN18 at checkout.

Howard Martin Confronts his DBS…and He Wins​

Hi Katie,

I just enjoyed the first class very much. 2nd class was also great as John did a great job. I don’t have John Argues email address because I need to thank him for what he did for me after class. If you would forward this to him that would be great.

As I was leaving class I went out the front steps at the same time I was adjusting my DBS (deep brain stimulator) and accidentally hit the off button. I haven’t turned it off early nearly 10 years. Suddenly I became rigid and dizzy. I didn’t fall but I went down to the sidewalk. Not realizing what I’ve done to myself, I suddenly turned into a 92-year-old man. John helped me get up and got me to a bench there on the right-hand side of the building. It took me a minute or two to realize what I had done to myself. As people with PD are not double Tasker’s. John didn’t want to be late for his next activity and left me there on the Park bench to recover. Which was perfect. I checked my settings with my remote control and confirmed what I had done. I turned it on and from my toes, I felt a tingling sensation of the electrical signals going out through my body in 3 to 5 seconds to reach the top my head and zap, I could walk again.

I just wanted to let John know what happened and realize what a marvelous thing DBS is. I walked 2 blocks to my car all without freezing once. All uphill and Singing hallelujah every step of the way.

See you next week and thanks.

Best regards,

Howard Martin

How Parkinson’s Has Affected My Life

By Lee Shapiro – 2018

I had a thriving law practice in both Denver and Aspen, Colorado.  I was diagnosed with PD about thirty years ago.  I am slower in activities of daily living. I hate being tied to a clock where I have to take pills every three hours; some of these medications are unpredictable and at times have side effects.  Parkinson’s has impaired my ability to think quickly and remember things.  It has also affected my ability to travel independently.  I cannot drive a car and must rely on other people to get around.

People with Parkinson’s fight each day to battle this insidious disease.  I have been able to accomplish much in spite of the Parkinson’s challenge.  PD Active provides opportunities for people to fight Parkinson’s by using classes such as the excellent yoga class I attend taught by Vicki Bell.

Additionally, I attend “The Art of Moving”, developed by John Argue.  He has retired and yet still seems to show up at Parkinson’s events.  Debbie Sternbach now teaches the class.  I exercise regularly and walk and occasionally job.  I try to do this daily.  I have even been known to go out in wet weather.

In conclusion, while I would never wish that I had PD, many benefits have resulted. I have grown in spite of Parkinson’s.  My relationship with Amy has been crucial in my survival and growth.  We are a team that fights Parkinson’s.

Berkeley organization helps those with Parkinson’s use exercise to slow symptoms


People with PD take a boxing class at Performance Fitness in Albany to keep fit and improve their coordination. Studies show that exercise can relieve symptoms that medicine cannot reach. Photo: PD Active

Meris Emory likes to mix fitness and fun; her weekly routine includes yoga, dance and boxing. Few people would guess from her workout that Emory has Parkinson’s disease (PD), a degenerative condition that once meant surrender to an isolated and sedentary lifestyle.

Today, that outcome is no longer a given. Though Parkinson’s remains a scary, relentless disease for which a cure has yet to be found, plenty of people with PD are now combatting isolation—keeping fit, learning new skills, staying connected to old friends and making new ones for many years after their diagnosis. At the heart of this movement is Berkeley’s PD Active, a feisty, home-grown non-profit started 10 years ago by and for people with Parkinson’s.

Studies now show definitively that exercise and mindfulness can relieve PD symptoms medication can’t touch, possibly even slowing the progression of the disease. PD Active board members have done their homework. The organization has provided seed money and other forms of support for a broad range of activities demonstrated to produce health benefits for people with PD—improving balance, agility, mental focus and wellbeing. Though hardly a household name, PD Active is pioneering an approach that has helped make the East Bay Parkinson’s community one of the most vibrant in the nation.

Dance makes me feel fluid again, yoga helps me relax, and boxing makes my whole body more flexible and more powerful,” says Emory, who lives in Oakland. “The added bonus: we’ve become a supportive family for each other, and I look forward to seeing friends in class.”

For many people with PD, including me, medication provides some much-needed relief from motor symptoms like tremor and rigidity. But a host of other symptoms — from fatigue and insomnia to clumsiness and depression — respond better to a combination of movement training, exercise, mindfulness practice, connectedness and creative activity. Pete Stewart, diagnosed over a decade ago, had this to say about a nationwide boxing program for people with PD: “Of all the pills I’ve taken, Rock Steady Boxing is the finest and most effective.”

Herb Heinz, a founder of PD Active and former composer, has lived with the disease for 18 years. He says: “Joining a Dance for PD class 10 years ago changed my life. It allowed me to be in my body in ways I had never imagined.” No longer able to compose, he added a room to his house outfitted for dance, music, yoga and multimedia activities. He calls dancing his “joy practice,” and welcomes others to enjoy the space too. That spirit of community and creativity typifies PD Active and its members.

An estimated 60,000 Americans are newly diagnosed with PD each year, not counting the thousands who go undiagnosed because each case is unique. A new study reported by the University of Rochester Medical Center refers to PD as a “looming pandemic.” Over a million people in the U.S. live with the disease, the second most common neurodegenerative condition in the nation after Alzheimer’s. PD’s correlation with aging—and the baby boomers now swelling the ranks of senior citizens—is pushing those numbers up, heightening the need to better understand the causes of PD and find effective treatments for the whole range of its symptoms.

PD Active is on the front lines of efforts to encourage people in our community with Parkinson’s to test various activities designed expressly to improve our quality of life. Not everyone is able to exercise at the same rate, but classes and groups allow participants to find their own level. PD sponsors many classes in the Bay Area and has a comprehensive list of where people with PD can exercise.


Participants in the class RockSteadyBoxing at Performance Fitness in Albany. Photo: PD Active

Many feel helped by working out regularly. Joanna Uribe, shown punching a bag in a Channel 2 news clip on Rock Steady Boxing, at Performance Fitness in Albany (which PD Active subsidizes) says “when I’m hitting the bag, I’m fighting back against PD.”

PD Active raises funds to help new classes get started, mobilizes volunteers and sponsors social events. The group has raised money to train instructors for yoga and chair yoga for PD and for a movement class called PWR!Moves. PD Active volunteers host a salon for writers and artists with PD and a singing class that hones speaking, breath control and voice skills. To keep members informed and engaged in our treatment plans, PD Active circulates a newsletter and holds a quarterly forum featuring experts on topics like current research and alternative treatments. It sponsors support groups, a picnic and other events that keep people connected. Classes and other activities are bustling, steadily attracting more participants.

“The enemy is isolation and depression,” said Heinz. “Probably only a fraction of people with PD participate in classes. That means a lot of people may be missing opportunities to be more connected and more fit. There’s often an instant, deep empathy when you meet another person with this disease. PD Active aims to make those positive experiences available to more people.”

PD Active does all this with a tiny budget, an energetic part-time employee, and the passionate caring of many volunteers. Going forward, the organization wants to broaden its reach to under-served communities in the Richmond/Hayward corridor and to the newly diagnosed with a peer mentoring program, and offer activities for people who are still in the workforce.

Karen Garrison, an engaged member of PD Active, lives in Berkeley. She was 61 in 2011 when she first developed major symptoms. Today, seven years later, Karen attends Dance for PD class, Rock Steady Boxing class and occasional yoga and PWR!Moves classes. She is planning to start a mentoring group to assist the newly diagnosed.

Karen Garrison’s Plan for Parkinson’s

Karen Garrison

I was diagnosed in early 2011 at age 61, though I had major symptoms at least a year and a half before that. I’d been a runner for decades; my leg started going weak after a few minutes on the trail, my hands shook uncontrollably, and I had trouble making myself heard. It took many months, visits to four different doctors, a futile round of physical therapy and a useless MRI before someone referred me to a movement neurologist who promptly connected the dots. I was stunned to learn I had Parkinson’s. At the same time, I felt relieved to finally have a name for symptoms that were making me crazy. When I asked my doctor how I could learn more, especially about holistic treatment, he sent me to the internet.

I found plenty of useful information there from groups like the National Parkinson Foundation, the Parkinsons Association and MJFF. And plenty that simply bewildered me. What I desperately needed was a person with Parkinson’s (PWP) who could help me understand what all this meant for me. I had a diagnosis, but no clear prognosis. Where would I be in five years or ten? Was there anything I could do to change the course of the disease? I started keeping a journal of my symptoms and treatments, which has come in handy (along with regularly taking the survey for the Unified Parkinson’s Disease Rating Scale) for getting a handle on my rate of degeneration. And I searched.

My web skills aren’t the greatest, but I managed to find one human with a phone number in a list of mostly distant support groups. That was Chrystal, who spent over an hour on the phone sharing her wisdom with me on everything from the merits of exercise to resources like the Palo Alto women’s support group, The Parkinson’s Institute, Darcy’s sobering and inspiring blog [www.parkinsonswomen.com], Berkeley PDActive, and Becky Farley’s Parkinson’s Wellness Recovery retreat. Eventually, I found John Argue’s book on movement in my public library and realized he was local. I started his wonderful class, where I met a neighbor with PD who’s become a partner in investigating PD treatment and a major source of support. Wouldn’t it be nice if we each had (or served as) a PD “sponsor” to help with questions, resources and the trauma of diagnosis?

The discoveries of my first few months led me to my own no-brainer treatment plan:
(1) get plenty of exercise, practice mindfulness (yoga, Qi Gong) and prioritize sleep (easier said than done);
(2) have as much fun as possible, spend time with friends and family, try new things; and
(3) make room for creativity, beauty, being in nature.

By now, word has spread that exercise is the only known treatment with even a chance of slowing the progression of PD; five years ago I expect most doctors wouldn’t have mentioned it. Otherwise, the logic behind my plan was simple: everything in it makes me feel good, PD notwithstanding. Turns out, the plan—and even PD itself—had some benefits I didn’t expect.

Hiking has always lifted my spirits and fed my soul. But there’s nothing like an incurable disease to make you feel more intensely grateful for every day you can still walk. I started weight training for the first time, so even as my leg gets weaker and my toes curl, I’m building arm muscles I never had before. And Qi Gong can make me feel more grounded when my symptoms are at their worst. The word “mindful” has taken on new meaning for me; I think people with PD have a special need for intention and a full and focused mind to compensate for our deteriorating autonomic systems.

PD makes me need (and value) friends and family more; they’ve responded with heart-rending generosity. It has also brought me new friends at a time of life when we’re more likely to lose loved ones than gain more.

When I’m designing or making a quilt I can forget I have PD for hours on end. And my quilt designs have become more original than anything I did before. I wonder if having a degenerative disease doesn’t prime the creativity pump, in the same way, it makes being alive feel more precious.

flow-2013w

I put off starting carbi/levodopa (C/L-dopa) until the PD interfered too much with work, in the belief that the drug had long-term complications. I tried dopamine agonists but couldn’t stand the fatigue. Various other drugs made little difference. A little over a year after diagnosis I started on 25/100 mg C/L-dopa at a dose of ¼ pill three times a day and gradually worked up to one pill three times daily. It’s worked like magic until recently.

Dr. Ahlskog, author of the New Parkinson’s Disease Treatment Book, changed my view on long-term effects of C/L-dopa. He says dyskinesias are locked to the current dose of the drug, not a cumulative effect. I now consider mild dyskinesia (wagging head, dancing foot, davening) an acceptable tradeoff for relief of PD symptoms. I’m at a turning point now when the drug is wearing off sooner and night-time symptoms are worsening, and his book helped me adjust the dose and timing of C/L-dopa (adding half a pill at bedtime) to address that problem.

I take 1000 mg of Vitamin D and a multivitamin daily, and think the former has helped some of my symptoms. I flirt with various versions of low carb and Mediterranean diets, emerging with no clear conclusions except that spices are delicious and should be indulged. Why not?

PD is insidious. Whenever I think I have a handle on my symptoms, they morph into some new unpredictable form. Managing it is becoming harder as I approach that time when I’ll “wear my disease like a scarlet letter at all times” (Jon Palfreman’s words). Of course, I would love to beat PD. Short of that, I just retired and am hoping to be able to join trials or help in other ways. In the meantime, the key to feeling good for me is to do what gives me joy, celebrate what I still have, try to be mindful, and keep growing in the many ways I can.

sam's-quilt-take-1w

Outing Yourself to the DMV — OR NOT

By Gary Sue Goodman

Gary driving

When the form comes for my first driver’s license renewal since my Parkinson’s diagnosis, I immediately sense the dilemma. The form asks if any changes in my health or vision have affected my ability to drive safely. Do I report my PD diagnosis and risk complicating the renewal process? Or do I fail to mention this development and possibly make myself liable for potential accidents that might occur? To guide my interactions with this bureaucracy, I wanted the benefits of other people’s experience. PD Active, I thought, could provide such valuable information.

The renewal form does not list Parkinson’s specifically as a disease to mention to the DMV (although it is listed online). The explanation of the health question emphasizes incidents of lost consciousness or serious confusion. But a progressive neurological condition should clearly be of interest to them.

According to retired disability rights lawyer Dan Brzoric, the DMV doesn’t want to deny people licenses: they want to facilitate driving, but they are responsible to ensure that all drivers can drive safely.

But one of the people with Parkinson’s whom I interviewed disagreed: she said the DMV seemed biased against her and wanted her to fail the driving test. Another didn’t feel that the DMV was biased against her, but resented that every communication from the DMV had an “accusatory tone” and casually threatened to suspend her license if materials weren’t received by the deadline. In fact, because her initial disclosure led to a hearing and a particularly long and difficult driving test, her license was suspended on the expiration date, and the DMV seemed “very casual” about her losing the right to drive.

Only one person I spoke with confided that he had decided not to self-report his Parkinson’s, anticipating a much more difficult process and possible loss of his driving rights.

All of the people who reported their PD diagnosis to the DMV underwent hearings, which involved submitting letters from their doctors rating their driving as unaffected by the PD, interviews about PD symptoms and side effects of medications, threats of a written test, and a driving test by a special evaluator. This test seems more difficult than people without Parkinson’s face: long and complicated driving instructions in which memory was a significant factor, having to back up a full block along the curb, merging and exiting safely on the freeway, or being instructed to take a 10-block route and then asked to find her way back to where they started.

Online the DMV says the evaluation may include hearings, letters from doctors, vision test, and knowledge test. And a special driving test designed to evaluate concentration, perception, attention, judgment and motor skills.

The DMV recognizes three developmental stages of any cognitive disease. With mild cognitive impairment, people can still live independently, handle personal hygiene, grocery shopping, banking and meal preparation. Judgment and ability to operate a motor vehicle safely may remain relatively intact. But the DMV may put drivers on medical probation and regularly re-examine. They also may issue licenses with restrictions, such as driving only during the day or not driving on the freeway.

When you get the notice, act quickly. Usually, you’ll have only about 2 months before the license expires. In fact, several people whom I interviewed did lose their driving privileges temporarily while in the process of getting their licenses renewed. Make an appointment with the DMV to renew your license.

Note that you can often get an earlier date by checking appointments at several locations. For this reason, I went to Oakland. Where you go may affect the experience and its outcome, but I don’t have enough information to assess this.

Ask your general physician and/or neurologist to write brief letters on your behalf stating that the PD doesn’t impair your ability to drive safely and take these with the form to your first appointment.

I took my form and my neurologist’s letter to my DMV appointment. I told the woman behind the counter that I had not checked the box because the PD had not made my driving unsafe. And I had brought the doctor’s letter for support.

The woman behind the counter seemed totally uninterested in my PD and didn’t even retain a copy of the doctor’s letter. She tested my vision, took my fingerprints and photo, and gave me an unrestricted license with a 5-year term.

If you have had an experience with the DMV license renewal process and want to share information, opinions, or suggestions, please leave your comments below.

Why You Should Try PD-Specific Exercise Classes

By Suzanne Drolet

Suzanne DroletSuzanne Drolet teaches Yoga for People with Parkinson’s Disease at Adeline Yoga in Berkeley and is the senior assistant in PD Active Yoga classes led by Vickie Russell Bell. She also teaches private and small group classes at her home studio in Oakland. You can learn more about Suzanne through her Facebook Page (Suzanne Drolet Yoga) and contact her at life_love_yoga@comcast.net.
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Regular exercise can have diffuse, profoundly positive effects for people with Parkinson’s Disease, from helping to make daily tasks easier and improving your mood, to stimulating chemical changes in the brain that affect cognition and the amount of dopamine available to be used. Given the wide variety of exercise classes available to the general public, why should you choose to attend classes specifically geared toward people with Parkinson’s Disease? As someone who has been involved with Yoga for PD classes over the last seven years, I offer a few reasons for your consideration:

  • Focus on PD symptoms: Typically, PD exercise classes are taught by teachers experienced in working with people with PD, so they are knowledgeable about typical PD symptoms, “on” and “off” times, and strategies to work with them. Additionally, these classes aim to improve many specific conditions experienced by folks with PD, including poor posture and kyphosis, rigidity of the spine and torso, balance and gait issues, breathing problems, diminished dexterity and strength of the hands, and difficulty transferring (for example, moving from a chair to standing), to name a few.
  • Community and Camaraderie: Being in a class where you’re not the “only one with PD” can help you to focus on the movements, rather than being self-conscious about challenges that you may be experiencing (tremor, balance, slowness). These classes support and encourage you to do your best, to push your edge (if appropriate), and to show up for each other. Over the 7-plus years I’ve been involved with PD Yoga classes, I’ve observed strong bonds of support and friendship develops in these classes. Numerous times, students arrive a little more down and aware of their struggles and by the end of class they are leaving feeling good and chatting it up with other students.  Knowing that others will be there also provides a good incentive to show up yourself!
  • Same Quality, Just Adapted: PD-specific classes offer the same high-quality instruction that your other favorite classes offer, with the added benefit of instructors knowledgeable about PD and experienced in creating adaptations and modifications to help manage symptoms and physical limitations in safe and supportive ways. As you learn new ways of moving your body, you become increasingly more self-confident and capable of moving outside classes safely and effectively.
  • Conscious, Mindful-movement Stimulates Learning: Many PD classes (such as yoga, dance, and boxing) involve learning new skills which requires conscious attention to sequencing movements. Learning new ways of moving can have cognitive benefits as well, because learning and remembering stimulate the brain differently than more routine movements.
  • Confidence and Safety: Many PD-specific classes have assistants to the primary teacher to help students feel more secure participating in classes that specifically address their challenges and to help them to perform at their best. This greater attention to each individual student’s practice translates into greater confidence, better participation, and increased safety.

Whether you take a PD-specific exercise class or one that is more mainstream, exercising consistently — over a long time— is key. Don’t wait to start and once you start, do your best to exercise — and generally move — as often as you can. The wide-ranging benefits of focused movement classes, knowledgeable instructors, and community and camaraderie offered in PD classes can help you to learn and integrate skills that you can use to stay safe and focused in other exercise classes and in daily life. Give one (or several!) classes a try! There’s always something you can learn, and no effort is ever wasted.