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!

 

 

 

LA Women in the Ring

When I found out I had Parkinson’s, my reaction was that I am not going to slow down, I am going to speed up            
Barbara

 

Sunday was our second meeting for LA Women with PD, sponsored by the Parkinson’s Disease Foundation.  16 amazing women, ranging from their 40’s to 80’s, came to Box ‘N Burn in Santa Monica, to hear Alex Montaldo, co-founder of STOPD (formerly Rock Steady Boxing NY/LA) talk about the benefits of boxing for all people with PD and to try out some boxing moves.

Alex stressed the need for intense exercise as a means for combating PD.  Whatever exercise you are doing, try to push yourself past your comfort level to reap the benefits of the exercise.  He said Parkinson’s is really manageable and you can have a great quality of life.

One woman asked what happens to people who have PD for more than 20 years?  Alex said that it is subjective.  No two people have PD who are in the same situation.   Another woman commented that “You say to do exercise and it helps.  Some people have done so much exercise and that they should not have gotten PD in the first place“.  Alex replied that “Exercise helps a lot.  Even if you were active your whole life, exercising might have saved you a few years of good quality of life.  And if you were not active before, now you don’t have a choice. It is a curse or a blessing or both.  It’s a curse because there is no way we can find a standard protocol that works for everybody.  Its a blessing because every single situation is a different situation and you can get creative with it.  Exercise is so far the only thing that seems to really work with the medications.  And if anyone tells you that you can do boxing, dancing, etc. and not take your medications, that person is not right.  Exercising on top of your medication regimen makes a huge difference.

Everyone was eager to get moving, so we started with stretching and then moved to the punching bags.  A few women were even brave enough to get into the ring and spar with Alex.

Finally, I interviewed two of the women who have very different Parkinson’s stories.

First, Barbara, who is a lawyer and working full time with two jobs.  She was first diagnosed with Polyglycemia, thick red blood cells, in 2009, and the doctors said “we don’t know what caused this, lets wait and see what shows up.”  Two years later she noticed a twitch in her right foot. She knew something was wrong.  Her internist said “not Parkinson’s”,  her chiropractor said “Parkinson’s”.   Her chiropractor, whose father has PD, said to go to a neurologist.  She ended up at the UCLA Movement Disorders Clinic.  She gets her info about PD from her Parkinson’s doctor, reads some of the websites and some books.  She tries not to get too much information and prefers to just get info about the stage she is in.  She has participated in several research studies, but was not impressed.  How does she fight the apathy?  She is on Mirapex and has the side effect of “the excessive shopping gene.”  She buys a lot of clothes and she is happy that she is working so that she can wear them!  She said “when I found out I had Parkinson’s, my reaction was that I am not going to slow down, I am going to speed up.  So now I have two pretty high powered jobs.  For me getting up every morning, getting dressed and going to work gives me the sense of being part of the fabric of the world.  I just didn’t want to be isolated.”  Her advice to the newly diagnosed – voice therapy has helped her a lot.

Tonya was diagnosed 13 years ago, 2 years after noticing symptoms.  She was told that she had lupus, that she had carpal tunnel, and other things, but not PD.  Her first symptoms were that she couldn’t write properly.  She was pregnant at the time and hoped that it would improve after the baby was born, but that did not happen.  She first went to the workers comp person at her job because she was on the computer all the time.  Then she went to several different neurologists, who told her she had rheumatoid arthritis or other conditions.  She eventually went to the UCLA Movement Disorders Clinic where she was finally diagnosed correctly.  Tonya said that it is essential that you go to a Movement Disorders Specialist, not just a neurologist.  She runs a support group in the South Bay and that is where she gets most of her information.  She participates in research studies whenever possible and often gets paid for them, which helps since she is no longer working.  She finds the research studies on Craig’s List.  (Go to Research Studies and type in Parkinson’s.)  She is also in the CNS database.  To fight the apathy, she says her kids keep her going.  She walks with friends a couple times a week and does exercise at home.  She loved boxing today and would like to try it.  Her advice to the newly diagnosed – “find a Movement Disorders Specialist who you can relate to.  It is so nice to talk to someone who really gets you.” 

Our next meeting will be on April 3 with Dancing Through Parkinson’s.  Time and place to be announced.

 

If you are a woman living with Parkinson’s in the Los Angeles area and would like to be invited to future events, please contact me at twitchywoman18@gmail.com