Parkylife isn’t just a pack of cards with advice on, it’s a way of living positively with chronic illness
Happy Labor Day to those of you in the United States. I hope you are enjoying the last un-official day of summer.
Twitchy Woman is in the media. Two totally different things made my week more interesting!
What is a Parkylife hack? A tip or trick to help with everyday life.
First, a few days ago I was surprised by a tweet from ParkyLife. The amazing Matt Eagles, who was diagnosed as a young teenager and very active in the UK Parkinson’s community, has come out with a deck of cards he calls Parky Life Hacks. Each card has a quote from someone with PD on one side and an illustration on the other. I had seen a few of them in Kyoto, but this one was new and had a quote from, you guessed it, Twitchy Woman.
A press release from Havas Lynx Group in the UK, who worked with Matt to design the cards, says: Parkylife.com brings together a combination of stories, hacks, perks and profiles of inspiring folk who have achieved great things despite their diagnosis. It has been designed by ‘Parky’ people to provide a positive and optimistic outlook on adapting to life with the disease.
For Matt “Parkylife isn’t just a pack of cards with advice on, it’s a way of living positively with chronic illness. It’s unique, it’s never been done before and its changing the way people with parkinson’s view their lives.”
Go to Parkylife.com to see all of the cards and the t-shirt that was designed for the project. You cannot order them yet, but if you are interested, send an email to email@example.com
The second thing happening this week is that Twitchy Woman was asked by the PMD Alliance (Parkinson’s and Movement Disorders Alliance) to take part in their Inspire Me series of online video discussions. I will be on this Wednesday, Sept 4 at 4:30 PDT. Registration is required to participate. Go to PMDAlliance to learn more about it and to register. I think the session will be recorded so that it can be watched any time afterwards. I will get back to you with the link for that.
Why does Grandma walk so silly? Why does her head bobble when she walks?
my 4 year old grandson, Evan
Sometimes we do not notice our symptoms, we are so used to living with them. Sometimes it takes someone else, even a 4 year old, to point out to us that yes, when we suspect that changes are occuring, it is actually happening and is not just a figment of our imagination.
My grandson’s statement was so funny that I found that I was laughing more than crying about it. So I asked Mr. Twitchy, who is usually quite observant, if he noticed my head bobbing when I walk. No, he had not noticed it. But he had noticed that my posture was not as good as it should be. And that my tremor, especially in my right foot, has increased. That one I was aware of, because I use my right foot in driving and it sometimes does not calm down until the second dose of Sinemet late in the morning.
So what is a Parkie to do?????
I knew that my meds were not as effective as they were a year ago. I have been on the same daytime dose of Sinimet for 5 1/2 years, which is actually pretty amazing. Lately I have noticed that I am having more wearing-off time, and my tremor becomes more pronounced. The worst thing of all is that my tennis game has completely fallen apart.
So does this mean that I am falling apart? Not necessarily. Symptoms come and go, depending on many things, such as stress, sleep, amount of exercise, etc. The last 4 months have been extremely stressful, so it is not a surprise that I am shakier. What can I do to reduce the stress, get more sleep and get back to what is “normal” for me?
Yeah, yeah. I know what I should be doing. But do I do it? Of course not. I do exercise a lot. My diet could be better. I get bored meditating. I much prefer playing games on my iPad. Instead of relaxing, I look for more things to do. That is just how I am. I have a feeling that many other Parkies are the same way. We need to be busy. We find it hard to say no. We don’t just do things, we go all out. There is no moderation here – it is all or none!
So after 10 1/2 years of living with my BFF, Parkinson’s, I can’t complain. I can still keep up with the 4 year old and his 1 year old sister most of the time. Their 3 and 6 year old cousins were in LA last month, and we had a great time with all 4 of them together, even with my silly walk and my head bobbing.
Do you live in Southern California? Check out this upcoming event:
One of the great things about the World Parkinson’s Congress (WPC) is that People with Parkinson’s (Parkies) are encouraged to submit an abstract for the poster displays. If you are familiar with medical conferences, many do not include the patient’s point of view, just the scientists or researchers. So I decided to take advantage of the opportunity and submitted an abstract to the WPC on Living Well with Parkinson’s. The abstract was accepted and the next step was to actually do the research and produce a poster!
The following is a summary of my research methods and the results. There were not really any big surprises, but the important thing is that it opened up a conversation for People with Parkinson’s to give their point of viewabout what works for them day to day in their journey with PD, not what their doctors or their care partners say.
Objective: As a blogger who writes about living well with Parkinson’s, I was curious about what other Parkies think contributes to their continuing to live well with Parkinson’s.
Method: I asked two groups to participate in the survey. The first was a Facebook group for Women with Parkinson’s Disease in November, 2018. The second group were readers of my blog, Twitchy Woman, which is a mixed group. I posed the following question to both groups:
Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you: For example: Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue
Results: There were 140 responses, 70 from each group.
ON THE POSITIVE SIDE:
EXERCISE IS THE SINGLE MOST IMPORTANT CONTRIBUTER TO LIVING WELL WITH PARKINSON’S – DWARFING ALL OTHERS. Medications, Emotional Support from family, friends, and especially friends with Parkinson’s, followed by a Positive Attitude were also important.
ON THE OBSTACLE SIDE:
DAYTIME FATIGUE AND INSOMNIA WERE THE BIGGEST OBSTACLES – Many Parkies cited sleep challenges as their biggest problem, with 63% responding that lack of sleep and fatigue were a major obstacle for them. Only 4 Parkies reported positively that they get enough sleep.
The effects of lack of sleep often cause other symptoms to flare up or become more severe. Balance and Gait problems, including falls, were the second most named obstacles, with Anxiety close behind. Many other symptoms were mentioned such as constipation, dyskinesia, off times, as well as lack of PD resources in their area.
According to People with Parkinson’s: Getting enough sleep and exerciseare the most important factors for living well with Parkinson’s Disease. Lack of either will have a cascading effect on the severity of their symptoms day to day.
At the WPC, I was given a 2 hour time slot during lunch on Wednesday to stand in front of my poster and talk to people about it. I enjoyed seeing what other Parkie’s presented on their posters. And it was also a great way for me to meet other people, many of whom are followers of this blog. For those of you who came to my poster just to meet me, thank you. It was great to talk to you and I really appreciate your support.
The next World Parkinson’s Congress is in Barcelona in 2022. I don’t know if I will be submitting a poster again, but at least I can say that I did it!
I can check that off on the list of things I never thought I would do. That list keeps on growing, thanks to PD.
Warning: The results of this survey are from a compilation of comments from People living with Parkinson’s disease. The responders were self-selected, so they may not be representative of many others with PD. Please do not make changes in your medications or other therapies without speaking to your doctor first.
We need to live in the moment. Enjoy it while you can
Several months ago I attended a Fox Foundation fundraiser which was a film screening about artist and designer, Debra Magid, who was diagnosed with Parkinson’s Disease in 2012. The film, Shake With Me, was directed and produced by Debra’s son, Zack Grant. My Parkie friends and I really enjoyed the film. Watching it almost felt like the camera had been on us. We thought it gave a very feminine point of view of living with Parkinson’s.
For background on the film, here is the description from Zack:
What started in 2016 as an exploration of Debra’s growth as an artist in the face of Parkinson’s Disease grew into a larger story of creativity, health, family and the will to cope. Spanning two years of filming, Shake With Me takes viewers on an emotional and physical journey through the many facets of Debra’s day to day life. Time and the unfolding realities of a degenerative disease dictate Debra’s constantly evolving views on her diagnosis. Whether she is creating art in her studio, taking a boxing class specifically for PD patients, or talking about how PD has impacted her friends and family, Shake With Me presents a truly raw and honest look at what it’s like to live, endure and succeed despite a life changing diagnosis and a future that is entirely unknown. The film is making it’s rounds on the festival circuit and will screen August 8th – 17th at the HollyShorts Film Festival in Hollywood, California. For more information on screenings and and to watch the film’s trailer please visit www.shakewithmefilm.com.
I had the opportunity to interview Debra a couple of weeks later. What follows are the highlights of that interview.
Twitchy Woman (TW): I was there with several Parkinson’s friends. We loved the film. It was lovely what your son did for you.
Debra Magid (DM): Wasn’t it? I was just amazed.
TW: We all thought it gave more of a female point of view. Did you feel that it was that way?
DM: I never thought about it that way. I can’t wallow, I just have to move forward and do the best with what I have. I guess that’s a feminist point of view.
TW: I don’t think men would be as forthcoming with how they feel on film.
DM: My son made the film over several years and he was quite secretive about it initially. I kept asking if he would show me something and he kept saying “it’s a work in progress. It’s not ready.” So it was a real leap of faith for me. For my birthday he gave me the 3 minute trailer and I was just blown away. The first time I watched it, I cried. I thought it was so beautiful. He gave me the chance to speak openly and honestly about PD in a way I hadn’t done before
TW: We are the caregivers, we are not used to having them take care of us.
DM: Luckily, so far, that hasn’t been needed. You get the diagnosis and you figure out a way to live with it. My attitude about my Parkinson’s is if you ask me a question, I will answer it but I am not going to say “this is what I am thinking about. This is what I am afraid of.” That doesn’t do anything for me. If I have to freak-out I know enough Parkinson’s people who I can go to. My best friends will always listen to me, but they can’t understand.
When I first told my son I have Parkinson’s, I think it hit him out of left field. He had no idea what to make of it. He had no way to process it…. He had not even noticed the shaking.
When I first told my son I have Parkinson’s, I think it hit him out of left field.
TW: How many years after you were diagnosed did he approach you to do the film?
DM: I was diagnosed in 2012. I didn’t tell him for probably a year. In 2016, he was taking a continuing education class in the city. He came to me and said he was doing a documentary for the class project and would like to make a short film about me. He said he had been thinking about it for a while. What started as a 5 minute class project grew into a full documentary
TW: If someone else had asked you about filming you, would you have been as open?
DM: I don’t think I would have been interested. It was my son. He would come to the house on Sunday afternoons, put a mike on me and follow me around with a camera. I don’t think I would have been as open with a stranger.
TW: How does your family feel about all of the publicity you are getting?
DM: They are all very excited. My son is thrilled. He sees it through two lenses. One as a producer and one as my son celebrating with me. He is hoping this will turn his career towards being a director. Things are really happening for him now because of it, so we are both thrilled.
TW: How does your daughter feel about this?
DM: She has been away in Australia for most of the past year, so she hasn’t been to one of these public screenings yet. She is very supportive. My husband is also very supportive.
TW: It’s hard for our kids to realize that Mom isn’t always 100% . They expect you to be like you always were.
DM: It is hard for the children to acknowledge that I have Parkinson’s and I am slowing down in some ways. Or is it just that I’m in my 60’s and am slowing down anyway? We’ll never know.
Maybe I am in denial, but I just can’t envision that I am going to end up in a wheelchair. If it happens, I will deal with it then. I see no point in spending the next 10 years worrying about it.
TW: You were diagnosed in 2012? How long before that did you start noticing symptoms.
DM: I first noticed my left hand shaking in March, 2012 and ignored it, hoping it would go away. By the end of summer, it didn’t stop and I started seeing doctors. I saw three doctors before I was prepared to accept the diagnosis. I still have symptoms only on my left side after 7 years. I see people who tell me that, after 15 years it is still only on one side. That inspires me.
TW: Are you still working?
DM: Yes. I am a designer. It wasn’t till about a month ago when Shake With Me was in the ReelAbilities film festival and the local NBC News station interviewed us, when I came totally out of the closet. I had only told friends and family, not clients, until that point.
TW: What accommodations do you use?
DM: I have difficulty controlling my left hand when typing, so I use a voice system for emails and texts. For the most part I don’t have to make accommodations.
TW: How long ago did you start your artwork again?
DM: You have to find someway to handle this terrible diagnosis. When my youngest child went to college, I needed to do something, so I went back to making art. The moment I walked into the studio I wondered why I haven’t been doing this for the last 30 years. It felt so natural. It took a while to get artistically back to where I was comfortable. I think it is what keeps me grounded and happy.
TW: Do you find it is off-time for PD when you are painting?
DM: Yes. I don’t think about anything when I am painting. It is the only time where I am free. If I shake, I don’t even notice it.
TW: What advice would you give other people with Parkinson’s about living well with Parkinson’s?
DM: You have to find something that makes you happy. You have to live in the moment because there is such huge uncertainty. You don’t know what tomorrow brings, so we had better enjoy today. I think PD, like any serious illness, makes you stop and evaluate your life. Parkinson’s makes you ask questions. I feel really lucky because I have a mild case and can do most of what I want to do. I know it won’t be that way forever. I see no point in obsessing now about a future possible decline
TW: What came across in the film to me is the positive attitude that you have. “We need to live in the moment. Enjoy it while you can. ”
As the Soaring with Hope for PD Parkinson’s project took off, one of the team members for that project, Clara Kluge came up with yet another way to engage People with Parkinsons (PwPs) for the World Parkinson Congress(WPC). Because she loved to dance and was involved in dance classes for PwPs, she envisioned having PwPs and the community at large create dances using cranes as the theme. Her dream became thePD Crane Dance Project. David Leventhal, the co-founder of Mark Morris Dance Group’s Dance for PD® Program, became her mentor on this endeavour; he calls Clara “the force behind this project.”
And she truly was a force, inspiring so many to participate in the project. Clara invited People with Parkinson’s from around the world to submit a 2 minute video of an original dance inspired by the origami cranes that she folded and sent to those who requested them. Expecting to receive about 50 videos, she received 147 from 17 countries. This added up to a whopping total of 5 hours of video! Over 1800 dancers participated from around the world. The two videos were shown on a continuous loop at the WPC at the Soaring with Hope exhibit and the Dance for PD® Program Booth.
Some of the spin offs from the project are that it inspired dancers to:
Learn how to fold origami cranes
Write poems about the experience
Dance more, move more
Tap their inner creative spirit
Make stronger connections
Feel connected with other dancers from around the world
Collaborate with fellow dancers
Not feel alone
Get excited about doing something positive for themselves
Get a tattoo of an origami crane
This project was such a success that Clara is looking into making a documentary of the whole experience with the many dancers and dance groups who participated in the original creation of this project.
To view more of these inspiring dances, go To YouTube and search Crane Dances Parkinson’s and a number of dances will appear. I will keep you posted when and where you can see all of the dances.