Two Stories from the Heart

Last month I had the chance to interview two more women with PD.  Since each of us experiences our PD differently, it is always interesting to hear how each person approaches her diagnosis and finds a way to move forward with her life.  We can learn so much from each other, finding our way on this lifelong journey with each other’s support and encouragement.

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Linda and Gail

Linda

Linda was a dancer. When she was in NY several years ago, she discovered that Mark Morris Dance Studio, the premier modern dance studio in NY, has classes for people with Parkinson’s.   She went in and there were about 50 people at all levels who were dancing. It is such a beautiful program. We know that exercise is good for us. It brought in music, imagery and creativity and it was so much more fun than slogging away on a treadmill for exercise.

Mark Morris dancers trained Invertigo Dance Theater to run the program. It must be run by professional dancers, because they really understand strategy of how the body works.

“A doctor told me 10 years ago when I was diagnosed that dance is going to help me stay well. And I am doing pretty well. Maybe it is the dance. We don’t make any medical claims. It is just a real dance class that is modified for PD.”

 

Linda thought her first symptoms were just the aging process, even though her mother had died years earlier from PD.   “I thought it was age. I was taking jazz classes but I couldn’t turn all of a sudden. I was getting dizzy when I turned on my left side. I thought, that’s unusual, since turns were always easy for me, and I wasn’t quite as flexible and I was stiff. It wasn’t till I was on vacation and I started getting a tremor in my left leg and I got worried. It started and stopped at the beginning and then eventually it just wouldn’t go away.   It only bothered me when I was resting. And that’s when I went to a doctor.”

She knows she had symptoms before. She had a couple of falls and other symptoms 5 years prior that she attributed to age. “When you look back it kind of resonates. I always had a reduced sense of smell. I broke my nose when I was 10 and so I never thought of that as a symptom.”

Initially she went to her internist who said “You don’t have Parkinson’s”. “I said maybe I have Parkinson’s since my mother had it. My mother had been bedridden for a number of years with Parkinson’s before she died. Then Linda went to a general neurologist and he said ‘I don’t know, you need to go to a movement specialist.’ I was going to NY to visit my children, so he suggested I go to a movement specialist in NY, which I did , and then I went to UCLA afterwards. They said time will tell. And they were right. It took 2 years to find the right doctor to treat her.”

She gets her info about PD from groups like ours, and from her doctors who have also given her a lot of information. Because she goes back and forth to NY so often, she also sees a doctor in NY who is one of the premier PD doctors in the US. All of her doctors have agreed on a course of action, and progression, which is comforting to know that the best doctors think along the same lines.

Linda started with Azilect, then the Neupro patch, which they recalled. Then Requip. And now Sinimet. It is the same medicine her mother was on. “I do see a difference after several years. It wears off sooner, I have to take it more often, but I am still on a relatively low dose.”

She is in a telemedicine study with the University of San Francisco. She thinks it is terrible, it has a long way to go to make it work. She is interested in the exercise study at USC, but travels too much to participate.

So what keeps her going?  Linda is doing the things she likes, like volunteering to teach this dance program.   It is satisfying and keeps her going.   She takes dance classes that are not so hard, but she is still dancing. And her grandchildren are her vitamins.   She travels often to see them.

What makes her experience so unique? Her mother had PD. She sees how different her life is than her mother’s was with PD. Her mother wasn’t active, so the trajectory of her disease was very different. She had a different life and wasn’t well. Linda says “I see all of us making the most of a situation that can make you want to crawl up into a ball and do nothing. But we are not letting it. We are trying not to let it.

Her one piece of advice for others is to keep moving. It really makes a difference.

Gail 

Gail was diagnosed about 4 years ago. In about 2005 she noticed her foot bouncing occasionally at odd times. She got a referral to a neurologist who said it was something neurological, but he didn’t know what. If it gets worse come back. In 2008 she thought it was getting more frequent and went to Dr. Steven Sykes at Cedars, who also said he didn’t know what it is, but if it gets worse come back.   November, 2011, while at a movie, she realized she had a tremor in her left hand and whispered to her husband “I have Parkinson’s.” I went to Dr. Sykes in December, who said he had good news and bad news. The bad news is that she did have Parkinson’s, but the good news is look how long it took to get to this point. In 2008, he had written in her record Parkinsonism. Something like, but he couldn’t make the diagnoses at that time. He thought I would have a slow progression and I think I have. I went on Azilect right a way. Started Sinimet about a year ago when I realized that my balance was off and I was stiff and I wasn’t moving. I could look in the mirror and see that it wasn’t me. The Sinimet really helps.

She goes to 3 support groups. She has made wonderful friends and learns a lot in the groups. The doctors don’t experience the weird little things that happen to us. We can always ask in the groups “does anyone have????”

Apathy has never been a problem for her. She goes to exercise classes and has so many activities to choose from. She loves the exercise class at the Westside Pavilion.   When she first started she could barely do many of the movements and has seen a big improvement in what she can do.

What makes her story unique? Loving support groups. If you reach out and use the support groups, it is very valuable. The thing that is really exciting to her is that she is on the board of the new PD organization that is starting in LA.

Her advice to the newly diagnosed: find all of the kinds of exercise and do the things that you enjoy and go to support groups.

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I hope to continue to interview more people with PD in the coming months and post their stories here.  Guys, that includes you, too.   Please contact me directly if you would like to share your PD story.

Parkinson’s Awareness Month and More

There is much to share with you this week.

April is Parkinson’s Awareness Month.  Join the Parkinson’s Disease Foundation Team During Parkinson’s Awareness Month    Friday, April 1- Saturday, April 30 (Online & around the US)

What will you do to help raise awareness this April, Parkinson’s Awareness Month? Join the team to #EndParkinsons with PDF and help make a difference in the PD community!

Click Here to Learn More

Last month, my Movement Disorders doctor, Indu Subramanian, asked me to write about my experiences with yoga and PD for the Brian Grant Foundation’s Power Through Project.  She worked with a yoga instructor to produce videos for the website about the benefits of yoga for People with Parkinson’s.  My story and Dr. Subramanian’s videos are now up on the  Power Through Project website.

Sunday, we had another great meeting for Women living with PD in Los Angeles.  Invertigo Dance Theater’s Sofia Klass and Linda Berghoff (also a PWP) teach Dancing Through Parkinson’s in various locations around LA.  They led us through dance sequences IMG_0824designed specifically for people with Parkinson’s Disease.  Special thanks to the The Wallis Annenberg Center for the Performing Arts in Beverly Hills for hosting us.  I had the opportunity to interview 2 more women about their experiences with Parkinson’s.  This has been a great way to share our journeys with other women and to help all of us better understand this disease that is changing our lives.  I will post their interviews later this week.

Have a great week.

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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

 

 

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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