Practice Makes Perfect

 

It doesn’t get easier, you just get better

seen on a t-shirt at Box n Burn gym

You want to try something new, but it just seems too difficult.  You go to your first yoga class and you are lost.  Everyone else seems to know what they are doing, but you are clueless.  You keep going, hoping that you will figure it out.   And then, one day, you are moving through the poses like everyone else.  Your body seems to know what to do.  You wake up one morning to discover that you can get out of bed much easier.  In addition, your gait has improved, your balance is better, and some of your other symptoms have improved.  How did that happen?

Malcolm Gladwell, in his book Outliers: The Story of Success quotes neurologist Daniel Levitin, who said “that 10,000 hours of practice is required to master a level of mastery with being a world-class expert – in anything”.  He goes on to say: “It seems that it takes the brain this long to assimilate all that it needs to know to achieve true mastery.”  On average, it takes 10 years to reach 10,000 hours.  Some examples he gives are The Beatles, concert musicians and hockey players.  Their commitment to practice many more hours than others gives them the skills they need to be the best of their profession.

So how does that apply to Parkinson’s Disease?  We certainly don’t have the luxury of doing something for 10,000 hours.  But if we keep working at a task,  we should improve.  Right?  That is the theory behind LSVT, Rock Steady Boxing, Dancing for PD, Yoga and all of the other PD exercise programs out there.  We are told to learn new things.  It is good for the brain.  It can be difficult to learn a new skill, especially if you have a tremor and stiffness.  You start out slowly.  But it should start getting easier as your muscles and your brain adapt.  And gradually you will work harder and better, without even trying.   If you stick with it, you should start noticing positive changes. You have practiced your voice exercises diligently and at some point, you discover that no one is complaining that they can’t hear you.  You have worked hard enough and long enough to be able to project your voice without even trying.  It now comes naturally to you.

Unfortunately, many Parkie’s are in a slow downward spiral as their symptoms continue to worsen.  They try everything they can to slow down the progression, but don’t put in enough time to “master” a skill.  I wonder what would happen to Parkie’s if they danced or boxed often enough to reach 1000 hours a year.  Would they begin to master the moves?  And how would that translate into improvement of their PD?

These are questions for the researchers out there.  I don’t know the answers.  But I do know that when I am engaged in an activity that I have been practicing often, my PD symptoms seem to improve.  I may not have mastered the activity, but it is getting easier over time.   And that definitely makes my life better.

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If you are not sure what type of exercise to do, here is a list of 12 types of exercise suitable for Parkinson’s Disease patients

A note to my readers, we are leaving for a vacation in Ireland, so there will be no post next week.

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

 

 

A possible breakthrough in PD treatment, Boxing and more

A few posts from the Parkinson’s Action Network.

Did you know that there is a Congressional Caucus on Parkinson’s?  The Congressional Caucus on Parkinson’s Disease was created to educate Members of Congress about Parkinson’s disease issues and to inform them and their staff about the latest developments in Parkinson’s research and care.  Led by its Co-Chairs, more than 150 members of the Congressional Caucus on Parkinson’s Disease work together to support the needs of our community in the hopes of finding better treatments and a cure for Parkinson’s.  They are our champions, and we are grateful for their commitment and dedication.    To find out if your Congressperson is on the list, go to http://parkinsonsaction.org/our-work/congressional-caucus/caucus-list-2/

Contact your Members of Congress today and ask them to show support for the Parkinson’s community by joining the Congressional Caucus on Parkinson’s Disease – or just take a minute to say thank you! Take action!

Exciting News!!!!!

Researchers in Singapore, working with Harvard University, have found that anti-Malaria drugs may have the ability to improve the lives of those of us with PD.  Read on:  http://www.cnbc.com/2015/07/15/potential-parkinsons-cure-unveiled.html

And finally, a video from Rock Steady Boxing in San Francisco.  For those of you who have not tried Boxing yet, what are you waiting for?  And to the women in Los Angeles, why aren’t you joining me at boxing at BoxNBurn in Santa Monica?  It is fun and an incredible workout.  (http://abcnews.go.com/WNT/video/parkinsons-disease-sufferers-fight-reclaim-lives-boxing-therapy-32405175)