Last March I went with Parkinson’s friends to a screening of the documentary short film “Shake with Me”, the story about artist and designer Debra Magid, who was diagnosed with Parkinson’s Disease in 2012. We all loved the movie and gave it an enthusiastic 5 stars for its portrayal of a woman – wife, mother and designer – and her family as they all learned to cope with the aftermath of her diagnosis and her re-emerging skills as an artist. I interviewed Debra afterwards about the film, life with Parkinson’s, family and more. You can read about it at Shaking with Debra Magid, which I posted last July.
The story that Debra’s son Zack tells in the film is not just a wonderful tribute to Debra but is also about her family and how they have met the challenges that Parkinson’s presents to all them. The documentary has been making the film festival circuits and has not had wide distribution. However, beginning today, it will be available to everyone on Vimeo.
From Zack:
Debra and Zack
“After a nearly four year journey, I’m very excited to release the film and give everyone the chance to find their own way to relate to my family’s story..“
Shake With Me is a documentary short about Debra Magid, an artist and designer who was diagnosed with Parkinson’s disease (PD) in 2012. In the fall of 2016, Debra agreed to let her son, Zack Grant, document the relationship between her art and her condition. What started as an exploration of Debra’s growth as an artist in the face of PD grew into a larger story of creativity, health, family and the will to cope.
You can view the entire film on Vimeo here beginning December 4, 2019. I highly recommend it.
If you have been following Twitchy Woman for the last few years, you have seen numerous updates on “Women and PD TALK”, the project that I co-chaired for the Parkinson’s Foundation that looked at the unmet needs of women with PD. Last Friday, the Patient-Centered Outcomes Research Institute (PCORI), which gave a grant to the Parkinsons Foundation for the study, published a story about our work on its home page. I am sharing it with you here today.
A special thank you to Melissa Schenkman, who wrote the article.
Improving Life for Women with Parkinson’s Disease
PCORI Engagement Award supports the creation of a national, prioritized women and Parkinson’s research and care agenda.
By Melissa Schenkman, MPH, MSJ Writer and Editor PCORI
November 2019
As an audiologist, Sharon Krischer used her skills to help others improve their hearing. But for a long time, she couldn’t hear what her own body was telling her.
The mother of three daughters and grandmother of four remembers writing thank you notes one day when her right foot started shaking. It continued happening occasionally, but the inconsistency made Krischer think nothing of it until she broke her opposite leg and the twitch in her right foot returned. This time it wasn’t going away.
Krischer’s internist prescribed anti-anxiety medication, but the tremor spread to her right hand. She saw a neurologist who said she had a Parkinson’s-like tremor and prescribed an anti-Parkinson drug.
After experiencing hallucinations from the medication, her internist referred her to a movement disorders specialist at University of California, Los Angeles. There, 18 months after first seeing symptoms, she received a diagnosis of Parkinson’s disease (PD). She was 57 years old.
“The first year is very, very hard if you are a young woman with PD because you don’t know how people will react,” Krischer said. “It’s also hard to go from being the caregiver to receiving care, especially if you have children.”
Her search for information on PD in women drove her to become the lead patient partner on a Eugene Washington PCORI Engagement Award, supporting a project to improve the lives of women with PD through research and care.
A Different Experience
Krischer is one of nearly one million Americans who by 2020 will be living with PD. It’s a number that is greater than the number of people diagnosed with multiple sclerosis, Lou Gehrig’s disease, and muscular dystrophy, combined.
PD is a neurodegenerative disorder that breaks down neurons, cells that are the building blocks of our central nervous system, the body’s own electrical grid. It mainly affects nerves producing the neurotransmitter dopamine, a substance allowing the electrical transfer of messages from one nerve cell to another or from a nerve cell to a muscle.
People can experience both motor and non-motor symptoms. Motor symptoms can include resting tremor. However, non-motor symptoms include less visible ones, such as depression.
While the cause of PD is unknown, researchers have found that men are 1.5 time’s more likely to have PD than women.
Several women went to a support group only once and never went back because it was almost all men. The only women there were the wives. They’d look at them and say, ‘Where’s your husband? Isn’t he the one with Parkinson’s?
Sharon Krischer Lead Patient Partner, Co-lead, Los Angeles, CA, forum
Women’s experiences with PD differ from men. They can face longer times between symptom onset and diagnosis, and between symptom appearance and visiting a movement disorders specialist, according to a small study conducted at Beth Israel Medical Center. Women may experience more non-motor symptoms and are more likely to be single or widowed, while men are more likely to rely on a spouse as their primary caregiver.
“A lot of people measure health through mortality. If that is the outcome you’re looking at, of course, men have poorer health outcomes if women live longer,” said Megan Feeney, MPH, senior manager, community engagement at the Parkinson’s Foundation, who helped spearhead their PCORI-funded project. “But when you look at other health issues women with Parkinson’s develop in conjunction with not having a support structure, the quality of life challenges they face are huge.”
The project created a three-pronged agenda specifically for women with PD. The agenda focuses on:
Increasing and improving research (basic, translational, and clinical) to better understand PD in women
Improving healthcare access and delivery for women with PD
Empowering women with PD and their care teams to advocate for optimal Parkinson’s care focused on women’s unique experiences
Maximizing Quality of Life
The decision to shine a light on women living with PD came from informal conversations in 2014 with women noting the lack of information, resources, and connections available to them.
From left: Yvonne Hylton, Kelly Weinschreider, Lisa Cone, and Ann Boylan. (Photo courtesy of Parkinson’s Foundation)
Women living with Parkinson’s disease lead a panel session at the National Forum in Houston, Texas, in October 2018.
Answering the call to action, Veronica Todaro, MPH, Feeney, and others launched a Women and PD Initiative, focusing on education and information. They organized a conference in 2015, selecting 25 women to attend.
Krischer was one. There, she learned about the limited information on women and PD, including knowledge on mental health and intimacy.
Attendees applied the knowledge, engaging their communities. For example, Krischer started a support group for women with PD, hosting activities including boxing classes and even a sex therapist’s talk.
“We now had the educational and community pieces, but still needed to understand where the gaps in patient-reported outcomes were,” said Todaro, executive vice president and chief operating officer, Parkinson’s Foundation.
It sparked her idea for leading a PCORI-funded project to create a national, prioritized Women and Parkinson’s research and care agenda. She collaborated with a national team, including women with PD, and representatives from medical universities and Parkinson’s organizations who assisted in creating materials and ensuring activities aligned with community needs.
The project, Women and PD Teams to Advance Learning and Knowledge (TALK), “allowed for a structured way to bring the voices of women with Parkinson’s into discussions around better outcomes related to decision making with providers and researchers to maximize women’s quality of life,” Todaro said.
In all, 242 women with PD and 178 stakeholders—caregivers, family members, health professionals, government representatives, and others working directly with PD patients—attended 10 forums around the country.
Empowering the Patient Voice
Women with PD discussed their experiences in relation to risk, symptoms, treatment, and care.
Krischer co-led the Los Angeles forum, where discussions included the difficulty of diagnosis, insomnia, and dismissiveness of some doctors because of PD’s association with men.
Another interesting issue was women’s experiences with seeking support.
“Several women went to a support group only once and never went back because it was almost all men. The only women there were the wives,” Krischer said. “They’d look at them and say, ‘Where’s your husband? Isn’t he the one with Parkinson’s?’”
Experiences like this were the norm in Sioux Falls, South Dakota, where Mary Tidwell lives. She started a support group for women after her 10-month journey to receiving her PD diagnosis. She believes it’s the only group specifically for women in the state.
Not surprising given that until August 2018, there was only one movement disorders specialist in South Dakota—located 350 miles from Tidwell.
There’s a real hunger for opportunities to connect with other people that have the disease, to learn from each other, and to support each other.
Mary Tidwell Patient Partner, Women and PD TALK, Co-lead, Sioux Falls, SD, forum
Women in rural areas face even greater challenges. For some, access to care means community health centers without neurologists and having the closest neurologist hundreds of miles away. Distance combined with the farming work cycle and the state’s harsh weather can limit opportunities to see a neurologist.
“It can be a very lonely disease,” Tidwell said. “There’s a real hunger for opportunities to connect with other people that have the disease, to learn from each other, and to support each other.”
The importance of establishing connections and having patients lead the way resonated with project stakeholder Ruth Schneider, MD, a movement disorders specialist at the University of Rochester’s Parkinson’s Foundation Center of Excellence.
“In my practice, I’ve found that women are more likely to internalize the disease, so PD becomes a part of their identity rather than a medical illness,” said the Rochester forum’s co-leader. “We are increasingly recognizing gender disparities in PD and our approach to addressing them has to be driven by our patients if we will make meaningful change.”
Making a Lasting Impression
Patients, researchers, and others disseminated the agenda through multiple efforts.
Yvonne Hylton, a woman with PD, Allison Willis, MD, a project co-lead, Feeney, and clinician stakeholders presented the agenda at the 2019 Parkinson’s Foundation Center Leadership Conference—an audience of leading researchers and clinicians from the foundation’s Centers for Excellence around the world.
The project is also affecting medical studies. Researchers reanalyzed data in the Parkinson’s Outcomes Project database, examining sex in relation to neuropsychological referral and adherence, comparing models of care within the foundation’s Centers of Excellence. They presented the results at the Movement Disorders Society annual meeting.
Sharon Krischer writes a blog to encourage the exchange of ideas and solutions with others affected by Parkinson’s disease.
Finally, several breakout sessions helped inform the Newly Diagnosed campaign, which aims to close the information gap so people can better manage their PD from the start.
While efforts to integrate and disseminate the agenda into future research continue, the patient presence remains constant, including their role in a second PCORI Engagement Award. The award will support the foundation in creating a nationwide standardized model of patient advisory boards for implementing patient engagement at medical institutions and furthering Parkinson’s patient-centered comparative effectiveness research.
“I think that scientists have an idea of what they are looking for, but I think you get a better perspective of what’s really happening by including the patient voice in the process,” Krischer said. “We are the ones going through this and what you think we need may not be what we think we need.”
Are you happier when you are busy? I guess that is a no-brainer for most people. When we are busy, we often forget about what is ailing us. With Parkinson’s, those dopamine rushes that come as a result of doing something successfully certainly make us feel better. That is one of the reasons why video games can be so addictive. They just make us feel better, especially when we win.
Mr. Twitchy, my wonderful neurologist and psychologist keep telling me that I need to cut some things out of my life, but honestly, the busier I am, the better I feel. Yes, I admit that I am more scattered than I used to be. My desk is a perpetual mess. I finish one project and then look for another to fill the void. I like to think that is because executive function in the brain is affected by Parkinson’s. So its not my fault! Really, its not!
So what is Executive Function? According to the ADPA:
Executive function: One can think of the “CEO” (chief executive officer) of a company and the many tasks involved in directing the organization. These activities may include multitasking, solving problems, starting new tasks, and switching tasks. Executive function involves the prefrontal cortex of the brain and the dopamine system, which are affected in PD. Executive dysfunction is one of the most common cognitive changes reported in PD.
Does this sound like you? After living with Parkinson’s for 10 years, I have found that things I took for granted, all mentioned in the above description, are getting more difficult. Multi-tasking is getting harder. I get distracted and forget to complete a task. I am always thinking of new projects, which only gets me deeper in the hole I am digging for myself.
However, there are rewards that come with all of this, and let’s not forget that. Don’t stay home alone, thinking that you can’t do anything. Get out there, continue to live the best life you can, with modifications when necessary, and you will feel better. Start slowly if you need to, its ok. Go to Parkinson’s movement or voice classes where you will find a wonderful welcoming community. Somewhere along this journey, you may find that you are in the best shape you have ever been because of all of the exercise you are doing. You have community of people with PD who understand what how you feel without even having to ask. You may even have found a new skill that you love – painting, music, writing. And the more you do it, the more you want to keep on doing it because it makes you feel good about yourself.
And then you will end up like me, and countless other people with PD who have found that they are busier than ever before and loving every minute of it. What’s so bad about that?
Speaking of keeping busy, two weeks ago I recorded a podcast with two other women with Parkinson’s for Parkinson’s Life, an online magazine based in the UK, for its Women and Parkinson’s Campaign. Mariette Robijn and Omotola Thomas joined me to talk about being a woman with Parkinson’s. We had a great time talking to each other about our experiences with hormones and PD, children, spouses, doctors who don’t listen to us and more. Click here to listen to Episode 5.
An emergency evacuation makes you realize you have a lot of junk, so you save a few photos and other memories. Most things can be replaced.
Steven, Getty Fire evacuee
The California wildfires in the last few weeks have wreaked havoc everywhere. Numerous friends of ours were evacuated from their homes in the middle of the night when the Getty fire started. I started thinking about what would I do? Am I prepared? What do you take with you when you don’t know when you will be able to return to your home?
Several of the boxers in my PD boxing class live in the hills above the Getty Center and did not come to our classes last week. When I saw Steven on Tuesday, I asked if he had been evacuated, knowing that he lived in that area. He looked visibly shaken by the experience, which he said was a nightmare. His home is above where the fire started and he could see it spread quickly.
The fire began around 2:00 am. The police came minutes later with their sirens blaring to tell people to leave their homes immediately. Steven does not recall whether he was awakened by the police or by the smell of smoke from the nearby fire.
The first thing he did was call a neighbor to find out where she was going. Her doctor’s office in nearby Santa Monica was open in the middle of the night for those who had to flee. Then Steven and his family gathered up their kids and he went in search of his PD meds. After shoving everything into a bag, they left and headed down the hill to the doctor’s office, ahead of the flames.
Once they were safely out of the area, Steven realized that he did not have his wallet, which meant no ID, credit cards, cash, and more. He could not go back home to get it. He said the experience was very disorienting, and the only thing he could think about was to take was his Parkinson’s meds with him.
The next morning, Steven and his family moved into a friends home for the duration, not knowing when or if they could get back into their home. He says that they were very fortunate to have friends with a luxurious, comfortable home that was big enough for Steven’s family and another family they were all friends with. The only alternatives were local hotels which were very expensive or community centers.
The evacuation was disorienting, as Steven said, and also crazy and nervewracking. They did not know if they would be out for 2 days or a week. After 2 days, he was allowed to go back to his home with a police escort to retrieve some things. Because they were with very good friends during this ordeal, they had some good laughs, and even some gallows humor. So this trip back to the house to get things they needed was dubbed “the trip to get everything of value before the house burns down!” The winds were expected to shift that night and turn the fire towards his home. But they got lucky, the winds died down and so did the fire. Steven said that an emergency like this makes you realize that you have a lot of junk. You need to save a few photos and things that are valuable or are memories. Most things can be replaced. Two days later, after 4 days with friends, the family was allowed to move back home.
How did all of this affect Steven’s Parkinson’s Disease? He said the whole experience is more difficult for people with health issues because they have much more to deal with. He was more disoriented than usual, as he stated earlier, which was probably a combination of PD and crisis. It did not increase his shaking and because he thought clearly enough to take his meds with him, he never missed a dose. Between taking care of everything with his family and the terrible air quality from the fires, exercise was not possible. Overall, Steven feels that he got though all of it ok.
The one thing that was missing in all of this was an Aware in Care Kit that is provided by the Parkinson’s Foundation for free. If Steven had one he may not have forgotten his wallet. The Aware in Care kit has forms to fill out with your medications and other important information. There is also room to keep bottles of all of your prescription medicines. I keep prescription bottles with about 4 days of meds in mine for emergencies. As long as you have the prescription bottles, you can always get refills. I also use my kit when I go on vacation because it is ready to go with everything in one place. For more information or to order yours, click here.
We are thankful that only a few homes were destroyed in the Getty fire and that Steven and our other friends who had been evacuated have returned home. Let’s hope that this is the last of California’s devastating fires this year.
I did not trip and fall. I attacked the floor and I believe I am winning. –
Anonymous
For those of us with Parkinson’s, there are many unexpected little things that continue to confound us on fairly regular basis. Sometimes we can figure out a way to combat the problem successfully. Or not.
Here are a few things that continually get in the way of life as usual for me and some of my solutions, if I have found any.
One of my biggest problems has been that I do not always pick up my right foot enough when out walking. So the curb that was so easy to navigate before suddenly became a black diamond ski run. My toe catches and I go flying! After the first 8 or 9 times it happened, I started to catch on. I had to be more mindful while I was walking, not looking ahead of me, but looking down.
One other little problem with looking ahead is I did not always see the obstacle beneath me. Twice while traveling, and maybe I can blame the first one on jet-lag, I had a major encounter with the ground. In Hong Kong, where the streets are always under construction, Mr. Twitchy and I decided to take the sidewalk rather than the elevated walkways between buildings. While looking at the amazing skyline ahead of us, I failed to see a cover over the sidewalk and went sprawling. A bruised ego, arm and leg were the result. Another trip, I walked right into a sink hole that was about 4 feet deep. Never saw it coming.
Now that I pay more attention when I am out walking, I have a new problem. While looking down, I bump into people and things because I wasn’t looking up. But at least I am not tripping anymore. Maybe a periscope will help.
Do you lose track of time? I get so involved in something, whether it is a puzzle, tv show, reading a book, playing games, that I totally lose track of time. I used to be ready to leave the house early, but not anymore. Because I lost track of time, I can’t find my purse, my phone or something else important that I forgot to get ready. How many times do you get in the car and realize you forgot something? Then it is back into the house to find it, which makes you even later.
Do you have an itchy scalp? That one was not in the Parkinson’s Play Book, but apparently it is pretty common for Parkie’s. I got some relief from a shampoo that was recommended, but it never lasted very long. Last time I got a haircut, my hairdresser used plastic scalp massager on my head while washing my hair. I didn’t itch for several days. I went to the drug store and found one that works well for me. My scalp is much happier these days.
I still attempt to play tennis. But like playing the piano, my hands don’t always cooperate. I take a great swing at the ball, and ……….my hand decides to lose its grip on the racket right at the moment of impact. I have thought of strapping the racket to my hand, but I don’t think that will work. Does anyone have a solution for this?
I don’t think Elton John has this problem
Do you play a musical instrument? Can you get both hands to cooperate at the same time? I started taking piano lessons 5 years ago, the first time since I was 13. I really had not played the piano since my kids were little so it had been probably 30 years since I had played. My right hand was tight from PD and playing the piano really helped open it up. I enjoyed playing again, especially classical music which I appreciate much more now about than when I was 13. So while playing the piano was great for my poor brain, several problems got in the way. My fingers did what they wanted to do – not what I wanted them to do. I could not memorize music at all. And I frequently lose my place when looking up and down between the music and the piano keys. Anyone else have this problem? Have you found a solution for it???
Finally, there is my handwriting. I am grateful for computers and iPads so that I can take notes with a keyboard, or record something to play it back later. As someone who used to do calligraphy professionally, this is the ultimate insult. My handwriting can be good and bad within the same sentence. Of course, when you want to write something that needs to be legible, it is always impossible.
Do you have anything that you would like to share? Little problems that you have found a solution for, or are seeking a solution. Let’s start a conversation. Please respond to this blog or on FaceBook.
