Fighting Parkinson’s Every Day

I used to say I knew people in show business, now I say I know people with Parkinson’s. Barry Blaustein

 

UNADJUSTEDNONRAW_thumb_756fBarry Blaustein joined our boxing class a couple of years ago, not long after he was diagnosed with Parkinson’s Disease.  It was clear from the outset that Barry is a fighter, in so many ways.  With flowing white hair and a big smile, he attacked the heavy bags with glee.  His strength and skill on the heavy bags impressed everyone in our little group.  Barry fit right in immediately.

His story, like so many of ours, takes a circuitous route.   Barry lost his sense of smell 7-8 years ago.  Then began dragging his feet.  His voice was getting lower and he just seemed sluggish.   He did not know that these were symptoms of Parkinson’s.  First, Barry saw his regular doctor, who dismissed his symptoms and said that he did not have Parkinson’s.

The symptoms persisted, so Barry made an appointment with a Neurologist at Cedars Sinai in Los Angeles.  The doctor there put him through the routine for diagnosing PD, walk down the hallway, open and close  your fingers, tap your foot, etc. and quickly confirmed that Barry did have Parkinson’s.  Since no one else in his family had PD, this was a surprise.  As Barry says, he is the pioneer in his family.

The doctor recommended that he exercise 30-35 minutes a day. Barry’s fiancee  looked up classes on the internet and found boxing classes for PD (StoPD).  He took boxing lessons when he was younger and knew he had fun doing it, so decided to give it a try.  Barry also walks 30-40 minutes or bikes, and goes to Pilates a couple days a week.  He usually exercises 7 days a week,  but occasionally takes a day off.  However he has recently developed sciatica,  which Barry says is much worse than Parkinson’s.

“People with Parkinson’s are fighters”

He asked his doctor once why he chose to treat Parkinson’s, the doctor said “People with Parkinson’s are fighters”.   Barry agrees.  “We don’t sit back and do nothing.  I didn’t do anything to get Parkinson’s (unlike many other diseases) If I had cancer and  smoked cigarettes, I would say I shouldn’t have smoked.  If I had heart problems or a heart attack, maybe I should have lost some weight.  But I didn’t do anything to cause PD.”

He is fortunate that he gets more sleep, unlike many others with PD.   Melatonin works for him and helps him to sleep better.  Otherwise, he takes Sinimet (Levadopa/Carbidopa) only. His tremor has gotten a little worse, but he notices it more than other people.  He also gets more tired,  but that could be from getting older.  His handwriting, which was always terrible, has gotten really bad.  Now he says  “I will write stuff and then will look at it and think, what the heck was I doing”.  Usually he types and if he starts to shake, he will stop and exaggerate the shake and shake it off.

Having Parkinson’s doesn’t really affect his work.   After a long career as a film writer and director, he turned to teaching screen writing at a local university.  For the last 7 years, he has been primarily a college professor.  He tells his students he has PD, always making the same speech at the beginning of a semester:  “I have Parkinson’s so if you see me shake, that’s a tremor from Parkinson’s, so don’t worry about it. If my voice gets low, just tell me to raise my voice, if I say anything really mean to you, that’s not the Parkinson’s, its exactly how I feel about you.  They all laugh.”  He approaches it with humor which puts them at ease.

Recently, he went back to writing scripts and along with his writing partner David Sheffield, he just wrote a new movie for Paramount:  COMING 2 AMERICA,  a sequel to COMING TO AMERICA, that the two of them wrote 30 years ago.   “They didn’t know it was being written by a guy who has Parkinsons”

This past year, Barry has gotten involved with the Parkinson’s community.   Last fall, he was a speaker at the Parkinson’s Foundation Walk in Los Angeles. He had participated in a few walks before and his daughter got very active with the Parkinson’s Foundation as a result.  She created some background materials about Barry to send to them.  After meeting with with Barry, they asked if he would be interested in speaking publicly for them.  He went to a workshop a couple of weeks ago and was asked to become a spokesperson for the Foundation.   He will be going to speak around the country, do some PSA’s (Public service announcements) and other things.  As he says, he is the new “Jerry’s Kid”.  He used to say, “I knew people in show business, now I say I know people with Parkinson’s.”

What does the future look like for him?  So far he has made no major changes in his life,  but knows he will eventually have to consider making a move because he lives upstairs in a duplex, and the stairs can become a problem.   He is looking forward to speaking on behalf of the Parkinson’s Foundation, and becoming more involved with the Parkinson’s community.

I asked if knowing People with Parkinson’s has changed his life.  He went to a support group once but didn’t find it all that helpful.  He said that too often, people are just griping.  However, Barry said the people in the boxing class are very brave. “I wish our boxing group got together every once in awhile and talked about our lives.  We are more than just our disease.”   What a great idea!  Let’s make it happen.

boxing-gloves

PD Boxing Packs a Punch

Find what moves you and fight for it.  Michelle Lao

Boxing coach Michelle Lao has written a guest column for Twitchy Woman about the benefits of boxing for PwP’s.  She has also created a short film about Boxing for PD titled On The Ropes:  Battling Parkinson’s Disease.  Several of the boxers that I work out with are featured in the film.  Click on the link below to watch.

It is incredibly ironic that a sport like boxing, often associated with being a contributor to Parkinson’s Disease, can also stop the advancement of it. There was always a strong correlation within the boxing community, that the constant blows to the head caused Parkinson’s. If the correlations are true, then the poison can also be the antidote. Boxing training places a heavy demand on the body which aides in re-establishing lost connections and building new ones within the neuronal circuitry. By learning a new sport, you are acquiring a new skill set that helps to increase neuroplasticity. With my PD fighters, I have seen countless mind body connections being made in boxing. These connections formed have slowed down the progression of Parkinson’s Disease. Here are the physical benefits that I have seen in my fighters:

  • Restoring loss of function in fine motor skills and gross motor movements.
  • Increase improvements in balance, coordination, gait, range of movement (flexibility), and proprioception (awareness of the body in terms of space)
  • Decrease in the slowness of initiating movement, in muscle tone (rigidity), and in frequency of involuntary movements (tremors)
  • Better sleep

Boxing can help improve cognition. Although boxing is a full body workout, it is also a cerebral sport. In my classes, boxing is used to sharpen the mind. My PD boxers have to be able to quickly adapt, predict, track and execute precision in movement and timing. When training, my boxers are constantly recalling combinations and patterns whether it’s by verbal or physical feedback. By engaging in these boxing drills, my boxers have shown significant cognitive improvements in the following areas:

  • Increase in executive function, memory and thinking
  • Improvement in verbal communication
  • Decrease in cognitive delays
  • Less confusion, more focus

I approach fitness more holistically. I believe that wellness creates a well-being. I find that my boxers have been able to find a community of people that they can relate to without having to explain the hurdles of their disease. Everyone is on the same playing field. PD boxing classes have helped my fighters manage their disease at an emotional level and the benefits are countless. Here are a few boxing benefits for emotional well-being:

    • Empowerment. You own the disease; it doesn’t own you.
    • Confidence. You know what your body can do for you and you can seize the day with it.
    • Cathartic. You can release all your stresses by punching it out.
    • Camaraderie. You gained a supportive network of friends who motivate and encourage you.
    • Independence. You no longer need to rely on others for help as much.
    • Improved quality of life. You are less depressed and can live a fuller life.

As much as boxing can be rewarding on a physical, cognitive, and emotional level, it also needs to be fun and engaging. If you do not find enjoyment in the movement program you participate in, then you will not benefit from it. Find what moves you and fight for it.

On the Ropes: Battling Parkinson’s Disease from Drastic on Vimeo.

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