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
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 firstname.lastname@example.org