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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Looking Forward to 2016

The cures we want aren’t going to fall from the sky. We have to get ladders and climb up and get them.

— Michael J. Fox

As 2015 comes to a close, those of us in the Parkinson’s community are excited about the many new  research discoveries regarding the causes and treatments for Parkinson’s Disease.  It seems that every week in the past few months, another discovery, whether it is a drug or therapy,  has shown to be effective in either slowing the progression of the disease or in some cases, even reversing it.  In the 7 years since I was diagnosed, I have never been so hopeful that maybe this year will bring the big breakthrough.

This is exciting news, especially since some of those drugs that show a positive effect in PD patients have already been approved for other diseases, thus reducing the time for FDA approval for persons with Parkinson’s.  Even salicylic acid, the main ingredient in aspirin, which we all have in our medicine cabinets, has proven to be effective for reducing the cell-death that leads to Parkinson’s.  Today there was even more good news.  Researchers at Scripps Clinic and Scripps Research Institute in San Diego are beginning trials on humans using stem-cells taken from the patient’s own skin.  Watch this video on KUSI News  Once the pilot project is approved by the FDA, the clinical trials should open up to multi-national research centers.  Researchers expect this to be a long term treatment for the movement disorders associated with PD.    FDA approval could be made in the next 24-36 months.

For me, 2015 brought about many changes.  My second grandchild was born in May, followed two weeks later by the passing of my mother.  It was a very tumultuous, emotional time for me.  I began writing shortly before my mother’s death, which eventually led to this blog.  This was one of the things that helped me to get through that very difficult time.  Thank you to all of my followers around the world.  It has been a very gratifying experience to share my “adventures with Parkinson’s” with all of you, making new friends because of our common bond.  I have almost 100 followers, so if you have not yet followed “Twitchy Woman” either here or on Facebook, please follow now so that we can get to 100 by December 31.

So looking forward to 2016:

A cure, perhaps?  Or at least a treatment that reverses the progression of PD.  Michael J. Fox said that the Michael J Fox Foundation has one mission – to find a cure – and once that cure is found, he will shut down his Foundation.  Let’s hope that 2016 is the year that he will close up shop.

For me, I plan to continue writing, enjoying this new-found creative outlet that I discovered after PD diagnosis.   Maybe I will end up like every other Parkinson’s patient with a blog and write a book.  OK, maybe a pamphlet.

Speaking of books, I hope to review a few more in the coming months, including the just published “Goodbye Parkinson’s, Hello Life!” by Alex Kerten, whose Gyro-Kinetics Center in Herzliya, Israel is a leader worldwide in treating clients with Parkinson’s and other movement disorders.  I have just started reading this and want to try some of his exercises for relieving PD symptoms.  Stay tuned.

I have become a PD Advocate for the Parkinson’s Disease Foundation after having spent a wonderful weekend with 25 other women with PD at the PDF’s Women & Parkinson’s Initiative conference last September.   I am looking forward to engaging with other women with PD living in Los Angeles.   On January 17, I will be hosting a meeting for women with PD to learn about the Women & Parkinson’s Initiative and to hear from a local PDF Research Advocate about getting involved in clinical research for PD.   If you are interested in this or future events for Women & PD in LA, please contact me directly.

IMG_0387I will continue to work on my boxing skills with Rock Steady Boxing NY/LA.  It is very hard work and great exercise.  Boxing has improved my balance and reflexes, and most importantly, my tennis game.   Besides, the men way outnumber the women in boxing classes, which makes it even more fun.  (Just don’t tell my husband).

Ommmmmmmmmmm……..yoga is the one calming activity that I regularly participate in.    It keeps me aware of my body, my balance and stretches my muscles.  I can still do a tree pose successfully most days, no worse than the others in the classes I attend.   Shavasana, Corpse Pose, at the end is better than a nap.  When I am done with class I am ready to take on the day.

Finally, I am looking forward to a year of new adventures with my husband, and not allowing Parkinson’s to take charge of me.  I will be in charge of my Parkinson’s and continue to enjoy life with my family and friends.

Wishing all of you a happy holiday and wonderful, healthy New Year.

Sharon

Hanukkah-And-Christmas-3  hdallpictures.com

Responses to Getting Past Denial

[animated-france-flag-image-0019This was written before the awful news from Paris today.  Our hearts go out to the families of all those affected by this senseless hatred.]

Today is a big day.  Thanks to all of you, Twitchy Woman has passed 1000 viewers.  What started last March with a posting called In the Beginning that had just 15 views in the first month, Twitchy Woman now has at least 60 followers from many different countries.  If you have not officially signed up to follow please do so by clicking on the Follow button to the right so that you won’t miss out on future postings.  The most viewed post was Things I Never Thought I Would Do, a short post about signing up for Boxing classes, followed by Seeking Self-Efficacy and Livin’ La Levadopa.

Since my goal was to create a forum for readers to share their experiences about living with Parkinson’s Disease, I would like to share a couple of responses from the last post “Getting Past Denial”

Myrna writes:

“When I was first diagnosed three and a half years ago, I fell into a pit of self-pity and depression that I couldn’t remember ever feeling before. I began to read everything about the illness that I could get my hands on, and I stumbled into a support group for Parkinson’s that I attended the very first week after I was diagnosed and it was a lifesaver.  Strangers gave me information, invited me to conferences on Parkinson’s, and befriended me in telephone conversations about the illness that helped me ever so much.   I read Michael J. Fox’s three books along with other authors too, and they were immeasurably helpful.   But denial is powerful and seductive and pops up in my heart and mind from time to time, despite the clarity of the illness to myself and others. Because so far the illness is progressing slowly, I find myself thinking, ‘I couldn’t really have Parkinson’s.’  Yet I know I have it without a doubt.”

From PD in Arizona:

“My Diagnosis…The New Me

It was early 2014 and we celebrated surviving the stress and sleepless nights of an extensive condo remodel in Scottsdale. Because we love the area and the wonderful condo enhancement, it prompted us to return home to WI, sell our home and relocate to AZ. In March ‘14 we noticed a strange ‘twitch’ in my left hand. My husband Brad and I both just instinctively knew it was a red flag. We never said the words, but unbeknownst to one another, we secretly Googled and read the symptoms: Oh NO…the ‘P’ word (Parkinson’s)!!??

I was diagnosed in June ’14 and it was the diagnosis I dreaded, but expected due to the classic tremors. My initial fear was that I’ll become an awful burden to my husband and apologized to him for my disease and ‘ruining’ our lives. We shed some tears and shared our honest feelings. I was numb and scared. How did this happen…to me??” My husband encouraged me to inform my siblings, but because both live in different states it was via “that phone call.” We then shared with other family members and our close friends. I heard nothing but positive, supportive feedback from all.

Although PD is more than daunting, very early on I let go and accepted my disease. It’s always been my nature to remain positive. Brad told me, ‘It’s the new you!’ I’ve embraced it by remaining educated and have infused quite the sense of humor. I often crack jokes about my twitches (both hands and a leg). I can’t hide it, so what other choice to I have? After all, everybody has something! And as I look at others around me I am so grateful I don’t have a brain tumor (like the one that took my dear friend) or losing my eyesight like another close friend. But don’t get me wrong. I’ve had a few bad days too like the time my husband found me closet crying, “I’ll never be normal again.” After conversation and hugs I pick myself up and move on.

Truly, I have so much to be thankful for: a loving supportive husband, an outpouring of caring family and friends who keep me in their prayers. I love that my best Rx is exercise; I’ve become involved with several clinical studies; and adore my network at the Muhammad Ali Parkinson Center. I walked my first PD 5K last year with my team and raised $2600 for the MAPC outreach programs, (which I – like Twitchy Women, also accidently posted on FB…one of the best things I’ve done.) I’m sure you guessed by now – my circle is quite aware that I have PD and I wear it like a badge of courage. They know that I’m a fighter and doing great. But, every single day…I still optimistically pray for that life-changing medical discovery or cure! We are getting close and it WILL happen!”

I would love to hear from more of you. 

Please don’t hesitate to get in touch with me at twitchywoman18@gmail.com to suggest other topics, or submit something to be posted.  As we say in Boxing for PD, we are all Fighters together in the fight against Parkinson’s.

Other interesting news from the web:

In case you missed it, here is a link to the terrific piece about Rock Steady Boxing that aired on CBS Sunday Morning:  Fighting back against Parkinson’s in the Ring

Using wearables to tackle Parkinson’s

Baseball Legend Kirk Gibson Has Parkinson’s Disease, Says It is Not a Death Sentence

And finally, an article sent to me about a breakthrough in crossing the blood-brain-barrier that has implications for future treatments for PD.  Canadian doctor first to break blood-brain-barrier.  And a related article:  Canadian Doctors Perform Breakthrough Blood-Brain Barrier Surgery Using Focused Ultrasound.