How was your week?

The boxing program that I have been with for the past 5 years has been experimenting with other types of activities for People with Parkinson’s. (PwP’s)The latest has been a writing circle with a professor of writing from NYU. StoPD, which is based in New York, is the brainchild of Alex Montaldo, an actor/boxer and his wife Roberta Marongiu , who is a Parkinson’s researcher. They offer boxing classes in Santa Monica, CA as well as various locations in NY. Alex has added acting classes in NY and now a writing circle, both of which aredesigned for PwP’s. Since it is on Zoom, I have been able to participate from my home in Los Angeles.

Last week, we were asked to write about the Pandemic with the prompt “On a scale of 1-10”. I would like to share mine with you this week.

“On a scale of 1-10.”

This past week was a 7.  Why, with the Pandemic raging around us, would I rate the week this high?  Without the Pandemic, it probably would have been a 9 or 10.  We broke the law over and over this past week.  And enjoyed every minute of it.

We celebrated our youngest granddaughter’s second birthday on Wednesday.  We were even allowed into my daughter’s house for 20 minutes and got hugs from both kids.  That rates a 15 in my book. 

Then on Saturday night, we broke the law again.  Yeah, yeah, we are criminals.  We had 6 friends to our house for dinner.  We set up the tables in a big square on our patio so that only 2 sat on each side.  No one touched or hugged anyone else.  And I even threw everyone out of my kitchen when it was time to clean up.  They were just too close.  But the night was gorgeous and we had a fabulous time.

And last night, we broke the law again!  Oh no!  Send out the pandemic police!

We met friends at the beach in Santa Monica to see the plankton do their bioluminescence thing.  Huh?  Bioluminescence, otherwise known as Red Tide, occurs when certain plankten show their true colors – red or brown during the day – glowing blue at night.  Walking past all of those signs that said BEACH CLOSED, we made our way to the shore.  Our friends went on Saturday night after I threw them out of my kitchen and saw the ocean lit up spectacularly, but the plankten just didn’t cooperate much on Sunday night.  The waves after dark were more of a phosphorescent white than usual, with some blue sparkles that disappeared so fast you couldn’t be sure if you really saw them.  After an hour watching the ocean as the temperature dropped, we gave up and went home. 

So the week was pretty good after all. 

What we did see
What we did not see!

An Evening with Jimmy

No matter what you are faced with, if you make your body healthier, you are going to feel better.  Jimmy Choi

On a perfect Southern California evening a few days ago, Mr. Twitchy and I had the priviledge of hosting American Ninja/PD Warrior Jimmy Choi at our home, with the help of Alex Montaldo and Roberta Marongiu from StopPD, who co-sponsored the event. Over 30 fans with Parkinson’s came on short notice to meet Jimmy and hear about his journey from Parkinson’s diagnosis to Ninja Warrior.  They were not disappointed.

Jimmy Choi was diagnosed with PD at 27 and basically denied that he had this “old person’s disease” for 8 years, until he had a wake up call.   He stopped exercising because of the diagnosis, had gained over 50 pounds and was walking with a cane for balance.  This former athlete was not in good shape.  Parkinson’s was taking over his life.

This was definitely not the person who was sitting next to me.  The Jimmy Choi I met was musclebound, moving easily without a cane.  Confident.  Knowledgeable.  What changed his life so dramatically?

One day after he lost his balance and fell down a flight of stairs while carrying his son. He realized then that he had to do something to turn his life around.  He was becoming a danger to his family and he could not let that happen.

He started slowly, just walking,   First one block and then two, gradually increasing as his energy levels improved.  Eventually he started working out with a trainer.  He had started to educate himself about Parkinson’s and changed his diet.  Then, one day he boarded a flight for a business trip, and found a copy of Runner’s World that someone left on his seat.  There was an article in the magazine about a person with Parkinson’s running a marathon.  That was the “aha” moment that he needed.  He came home and entered his first 5K race.  Then a 10K race.  He quickly moved on to 1/2 marathons and then finally, marathons.  He has run over 100 1/2 marathons and 15 marathons since 2012.  His weight came down, he no longer needed the cane and eventually was able to reduce his meds because of all of the exercise.  His balance improved along with his gait.  He is living proof that exercise is the best medicine for PD.

All of this eventually led to his participation in American Ninja Warrior (ANW) competitions.

 

In the video of my interview with Jimmy, he tells his story and explains how he got involved in working with the Fox Foundation, (for whom he has raised over $250,000,) and ANW.  I think you will find him very inspiring and motivating.

My dear friend and PD pal, Sandy Rosenblatt came out of PD forced retirement to record and edit  this video which shows how amazing and inspiring Jimmy is.

 

Following Jimmy’s talk, we participated in PushUps4Parkinsons and in an obstacle course set up by StopPD.  Thank you to Jen Heath, who brought the project to us and created the video.  Watch Jimmy doing his pushups with first his daughter, then Alex Montaldo, on his back.  He is one impressive man!

 

 

 

PD Women come together in Los Angeles

The vitality, focus and awareness was indeed a “Factor” in yesterday’s gathering.This stellar group of women is committed to being  proactive and is gaining momentum and encouraging the greater PD community to become knowledgable and to share in our plight.

Cheryl K

logo_women_and_pd_2015_tintedSunday, January 17, 13 women met  for the first time at Factor’s Deli in Los Angeles as part of the Parkinson’s Disease Foundation’s Women & PD Initiative.  This diverse group of women included several with early onset PD, a couple who had recently been diagnosed and one who has had PD for 24 years and is doing great!  We all shared our experiences with being diagnosed or misdiagnosed, bad doctors, good doctors and more.

PDF Research Advocate Kristin Mendenhall educated us with  a comprehensive  Power Point Presentation about Parkinson’s Disease, research and the need for all of us to participate in clinical trials and to advocate for more funding at the NIH and other institutions.  We learned about local trials at UCLA and USC that we may be able to participate in.  Another fascinating project that she talked about is serving as a trial patient for medical and physical therapy students so that they can learn  about Parkinson’s Disease from a real person with Parkinson’s.  We need to find out how more of us can get involved in that.

We also talked a lot about exercise and the need to keep moving.  Roberta Marongiu, owner of Rock Steady Boxing NY/LA and a neuroscience researcher at the Weill Cornell  Medical College in NY , spoke about the boxing program and filled us in on some of the stem cell studies currently taking place.

We also talked about the upcoming World Parkinson Congress in Portland, Oregon.  I was happy to see that several of the women are planning to go.  Roberta, who attended the last WPC,encouraged everyone to go because it is an amazing experience that is not just for scientists and doctors.   There are many lectures, workshops and other things geared towards people with PD and their partners or caregivers.

The enthusiasm in the room was high.  The women were hungry for information and never hesitated to ask questions.  Two women, who had been afraid to be around other women with Parkinson’s, walked away with a new appreciation for being part of this exclusive group of women with PD.  They all left wanting more.  When asked about scheduling another meeting, the answer was a resounding “yes!” Several have offered to help planning future meetings which might include a Dancing Through Parkinson’s demo, a chance to get in a boxing ring, hear from a local doctor or researcher and even a “gripe session”.  Our next meeting will be on March 6, somewhere in Los Angeles.

If you are a woman with PD living in Los Angeles and would like to become part of this group, please let me know and I will add you to our list.

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