Shaking with Debra Magid

We need to live in the moment. Enjoy it while you can

Debra Magid
Debra Magid with Farrel Levy

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.

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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. ”

Watch the trailer by clicking on the image below.

To see more of Debra’s artwork go to http://www.debramagid.com

The Crane Dance Project for Parkinson’s

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 the PD 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. 

Origami Dance
Japan Parkinson’s Disease Association Fukuoka
Invertigo Dance Theatre, Los Angeles, California

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.

10 things that can help you cope with your new diagnosis of Parkinson’s Disease

Many bloggers write about what you can do to cope with a new diagnosis of Parkinson’s Disease. We all have a different take on the issue, so if you have just been diagnosed, look for other blogs with similar titles. As they say in the Parkie world, we are like snowflakes, no two of us are alike. Each one of us has different symptoms and responds differently to medications and therapy. By reading several different blogs, you will get a broader perspective about your new companion, PD, which will be at your side for many years to come. So here are some of my suggestions for living well with Parkinson’s.

You have just been diagnosed. You walk out of the doctors office in a state of shock and the reality of it doesn’t sink in until after you get home. So many unanswered questions and your next appointment is 6 months or more away. What can you do?

Well, there are actually a lot of things that you can do before you see your doctor that will help you understand your new constant companion and to feel better about it. Before you do anything else, try to make a follow up appointment sooner if possible. Make sure that you bring someone with you who can help ask questions and take notes for you. Prepare a list of questions to take with you. We all forget to ask key questions if we don’t write them down. Click here for a worksheet from Health Monitor that you can use (scroll down the page to get to it).

Twitchy Woman’s 10 recommendations for the newly diagnosed:

1. Exercise. I can’t stress this enough. Exercise has been shown to be the most effective way to combat the effects of PD. If you are already exercising, good for you. See if you can increase your level of activity – the more you push yourself, the better the results. If you have not been exercising, start slowly. Walk around the block. Add distance and speed as it becomes more comfortable for you. Add different types of exercise to your routine. Varying what you do on a daily basis is good for your brain and your body. Most importantly, find what you enjoy doing. If you don’t like it, you won’t do it. My exercise routine is a combination of Boxing for PD, regular yoga classes, tennis and a Peloton bike.

2. Continue to do what you did before your diagnosis. PD may eventually slow you down, but for now, don’t let it stop you.

3. A good diet. Check Dr. Laurie Mischley’s website for recommendations for a Parkie diet.

4. Get out of the house. Loneliness is the #1 cause for a rapid decline with PD.

5. Find a mentor with PD. Ask your doctor if he/she can recommend someone living well with Parkinson’s who you can talk to. We have all been in your shoes and understand what you are going through. A mentor can answer your questions and be there for you when you need a friend.

6. Go to a support group. This may not be your thing, but try it anyway. There are a lot of different types of support groups out there and you may find new friends with PD who will become your support system.

7. Find a class for Parkies – boxing, dance, yoga, etc. The best way, in my opinion, to find your way through the maze of PD. The people you meet in these classes will become an important part of your support system. They know what you are going through. It also keeps you from being isolated (see #3) and gives you something to look forward to.

8. Go online and look for a few blogs and websites that you can trust and relate to. Beware of those trying to sell you a “cure”. Some good websites to start with are Michael J Fox Foundation, Parkinson’s Foundation and Davis Phinney Foundation. For a list of blogs I like, click on the Resources tab.

9. Read a good book about PD. Click on the My Books and Things I Like page (above) for recommendations. Two books I will recommend you start with are Parkinson’s? You’re kidding me, right? One woman’s unshakeable belief in overcoming a shaky diagnosis! by Sheryl Jedlinski andBrain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman. And order Every Victory Counts” from the Davis Phinney Foundation. It is free and a good resource.

10. Go to an educational program about PD. The 3 foundations above all sponsor educational programs, as well as The American Parkinson’s Disease Association and local Parkinson’s groups.

I hope that this will help. The most important thing for you to know is that you are not alone on your journey with PD. Don’t hesitate to reach out to me or to others with Parkinson’s Disease. We are there to help you.

“Listen to your body!”

We are finally getting caught up from our trip to Japan. Since returning home, Twitchy Woman has gotten a lot of press. This is very exciting!!!

Just out in Doctor’s offices is a magazine published by Health Monitor. The “Guide to Living With Parkinson’s Disease” is distributed free to doctors offices in the US. The article: “We’re doing what we love!” features me along with two other women with Parkinson’s.

Unfortunately this guide is not available on-line, only in print. If you would like to see a copy of the entire magazine, please email me at twitchywoman18@gmail.com and I will send a PDF copy to you.

Parkinson’s Life, an online magazine based in London, published “World Parkinson Congress 2019: the travels of ‘Twitchy Woman” on June 20.

Photo from WPC with friends and Parky is featured in the blog post.

Farrel, Sharon, Elpidio, Naomi, Parky and Clara in front of Soaring with Hope for PD

The same photo of Twitchy Woman with friends at the WPC also showed up this week on Speakmedia’sImages of the Month” for June. Speakmedia is the parent company of Parkinson’s Life.

I want to thank all of you for being loyal readers. None of this would have happened with out you. Your support, comments, emails, etc., have encouraged me to continue writing Twitchy Woman over the last 4 years. Let’s keep the dialogue going.

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The Crazy Hat Lady is Back!

It’s summer time. Here in Southern California, the June gloom is giving way to the glorious sunshine that California is known for. And all that sunshine brings us both the good and the bad.  It is also time for the return of the Crazy Hat Lady!  My big hats have been dusted off and ready to be worn.

The good: Vitamin D. Soak up some rays to get your vitamin D naturally. Now that winter is over, get outside and enjoy it.

The bad: lots of skin problems, specifically skin cancers caused by the sun. For people with Parkinson’s, our risk of melanoma is higher than that of the general population. It doesn’t matter if you are fair with lots of freckles, or dark skinned. You need to be vigilant and make sure that you see a dermatologist at least once a year, more often if something just doesn’t look right.

To combat the harmful UV rays, you need to use sunscreen, lots of sunscreen. And take a hint from all of those Japanese women we saw with umbrellas in Kyoto. They had the cutest umbrellas designed specifically to combat UV rays. I had to buy one before I left Japan. The only ones I have found at home are Sunbrella, which are utilitarian at best.

So now, in addition to wearing a big hat when walking around LA, I also have a cute umbrella in tow.

Why do I take such precautions? I have had numerous skin cancers over the years. The first one, 34 years ago, was a Melanoma. Why start with the easy stuff, right?  Mr. Twitchy detected that one and sent me to the dermatologist. Fortunately it was barely a stage 1 and only required a deeper cut to make sure everything was out.

Overall, patients with Parkinson’s were roughly four times likelier to have had a history of melanoma than those without Parkinson’s

I have an increased risk of Melanoma because I have had a previous Melanoma, Parkinson’s and the BRCA2 mutation for Breast Cancer.  A triple threat.   There is an interesting relationship between Melanoma and PD.  According to the Mayo Clinic  “Overall, patients with Parkinson’s were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s, the research found.”  *

A few weeks ago, I went to the dermatologist for my semi-annual skin check. I found a spot on my arm that looked new and had her look at it. It had the typical warning signs: two toned, irregular shaped.This image has an empty alt attribute; its file name is image.jpegShe removed it and sent it out for biopsy. Needless to say, I was not surprised when she called to tell me that it was indeed a Melanoma. Again, it was tiny, in situ, which means that it had not spread beyond the initial site into the deeper layers of the skin. I just need to go back and have some more tissue removed.

As I said to my dermatologist, it took 34 years to get a second Melanoma. I can live with waiting another 34 years before getting another one. But until then I will still wear my big hats and now I have that cute umbrella to carry around, too.

So the crazy hat lady will be roaming the streets of Beverly Hills again this summer, Watch out! I am armed!

* People with Parkinson’s should be monitored for melanoma, and vice versa, Mayo study finds