PT or not PT?

On Sunday, our Inspired Women with Parkinson’s in Los Angeles group met with Dr. Ali Elder of [re+active] physical therapy and wellness in Los Angeles.  Dr. Elder spoke to us about the benefits of exercise for People with Parkinson’s (PWP) and showed slides of dopamine in the brain before and after exercise.  Exercises can delay the progression of the disease and the release of dopamine in our brains can make us happier.

The bottom line:  Exercise is medicine, don’t forget your daily dose!  Exercise on a regular basis, but make sure that it is something that you enjoy.  The fact that you enjoy it is a result of the increased dopamine in your brain.  And the exercise does not have to be limited to just doing cardio on a bike.  Dancing, hiking, walking, yoga, boxing, tennis and more have been shown to not only increase our dopamine, but also our flexibility, balance and general well being.

So when and why should you see a physical therapist?  According to Dr. Elder, you should be seen immediately after diagnosis.  An assessment will help determine how the PD is affecting your gait, your reflexes, balance and much more.  Exercises can be assigned to address your issues and help to slow to the progression of the disease.  It was recommended to start with one visit to get a baseline of physical function and then the frequency of follow-ups can vary from once per week, once every six month and everything in between.

A physical therapist can also talk to you about taking your medications properly and the effects of food on your medications.  Only a few women in the room had actually gone to a physical therapist.  Most of us did not know that this was an option for us.

Finally, Dr. Elder and her assistant, Jazzy led us through a PWR!Moves workout.   PWR!Moves is a PD-specific skill training program to maintain or restore skills that deteriorate and interfere with everyday movements.  There are 4 basic exercises designed to address symptoms related to Parkinson’s. PWR!Up, PWR!Rock, PWR!Twist and  PWR!Step.  After going through different versions of each of the 4 exercises fairly confidently, we then had to walk across the room throwing a scarf in the air and catching it with the opposite hand.  Chaos ensued.  Just when you think you have figured it out, your balance is affected.  Try it and see what happens.

Screen-Shot-2015-11-24-at-3.01.23-PM1-1024x312
Photo courtesy of PWR!

 

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

Getting Past Denial

“I don’t want to be around other people with Parkinson’s.  I am still in denial.”    Anonymous

Sunday, I invited several women with Parkinson’s Disease to a meeting at my home in order to form a support system for women with PD in Los Angeles.  One woman cancelled the day before; she said she was still in denial and was afraid to be around other women with PD.

This is not surprising.  One of the hardest things for everyone when hearing the words “You have Parkinson’s Disease” is acceptance.  Those four words conjure up a bleak future, perhaps of an elderly person with a noticeable tremor, stooped posture and shuffling walk.  Or worse, someone sitting and drooling in a wheelchair.   No one wants that future.  And the younger you are, I imagine the harder it is to accept it.

Denial takes many forms.  We resent that our lives cannot go back to “normal” (whatever that was before the PD symptoms started).  We resent that there will forever be a “new normal” for us; and that it can get worse with time.  We find it hard to talk about, even with our family and close friends, because that constitutes an “admission” that we will forever be different.  For those of us with tremor dominant PD, it means hiding the uncooperative hand in a pocket, sitting on our hands or finding some other way to hide the tremor from your unsuspecting friends (Michael J. Fox speaks about having to lean on props on the set to hide his symptoms).

But at some point, it becomes impossible to hide.  I remember speaking in front of a group without a podium, a script in my non-PD hand, desperately trying not to shake.  It was awful.  It was humiliating.  It got to the point that even when standing behind a podium, I was sure everyone could see me shaking.

Still, I  could not — I refused to — come to terms with having PD, no matter how visible my symptoms were.  Finally, after struggling for about 5 years, including at least 2 years in therapy, I was able to acknowledge it and start writing about having PD.

Even then I still wasn’t ready to share it with the world.  I started writing for myself, and then for others with PD.  Perhaps this was still partial denial;  I would only share with a select group of fellow sufferers.  There was no way I was going to post anything on my Facebook Page, and I certainly wasn’t going to volunteer the information unless asked.  So I started this blog, and then a Facebook page just for Twitchy Woman.

And then, in a Parkinson’s moment, I made an accidental posting on my regular Facebook page a month or two ago.  I realized it a few minutes later when friends started to like my post.  At first I was horrified.   I immediately removed the post and put in on the Twitchy Woman page, but you can’t put the proverbial genie back in the proverbial bottle.

Since then, the “mistake” has been liberating to some extent.  While I am not ready to shout it from the rooftops or put a “PD” neon sign on my head, I no longer feel the need to go to great lengths to hide what I have.  I don’t know if I am 100% out of denial (or if I ever will be) but I am definitely more at peace with this disease than I was.   I am grateful that my symptoms have progressed slowly and that Sinimet comes close to eliminating my tremor, and it certainly helps to stay abreast of the latest news coming out about new drugs that may slow or even reverse the progress of PD.  I think I have entered a stage where I no longer fear that PD defines me; I have accepted that it is a part of me and that I have to deal with it and manage it.  By embracing it, I have been able to move forward.   And that is liberating.

How have you gotten past the denial stage?  We all cope differently, so please share your thoughts by sending them to me at Twitchywoman18@gmail.com.   I will post a compilation of your responses in a few days.

Women & Parkinson’s Initiative (Part 2)

I am truly honored to be part of this distinguished group of women.  I read everyone’s bios, but they do not do them justice.  Each is remarkable in her own way.  And Parkinson’s brought us together.  I have heard many times how their lives have been enriched, yes enriched, by having PD.  No, we don’t want to be defined by our PD.  But what has happened is that because we have PD, each of our lives has gone in a new direction.  We have taken skills from our “former lives” and are using them to reach out to other women who also have PD.

The goal of the conference is to teach us about how women are affected differently with PD than men.  We will then go back to our communities on behalf of the Parkinson’s Disease Foundation and plan a retreat, event, support group or other educational program specifically for women with PD.  Today we took our first steps in the planning process and will work out the remaining details once we return home.

Yesterday we heard from three women who gave us some of the tools we will need to plan our program. Many of these observations are from fellow blogger Darcy Blake from Parkinson’s Women Support

Rutgers Professor Roseanne D. Dobkin shared with us her recommendation to stave off depression: meaningful involvement with daily exercise, social interaction & personal goals in life.  She says we can’t control what goes on around us but we CAN control how we respond to it.  With our diagnosis things immediately become different. If we don’t take care of ourselves, everything else falls by the wayside.  That includes our spouses, children and work.

The second speaker was one of our own women, PD self-efficacy guru Diane G. Cook who said, “Achieve influence over conditions that affect one’s life. Believe in possibility!” Very true!

Dr. Rebecca Gilbert, from the Division of Movement Disorders, NYU Langone is an incredible speaker.   Those who are her patients are fortunate, indeed. “Become a force for good, don’t wallow,” she said. Dr. Gilbert, who covered every aspect of medications, symptoms and future developments, also answered a flurry of detailed questions from our very educated audience without hesitation. She is like a key to the library of Parkinson’s disease, and we are so thankful for her!

IMG_0386Our last session before dinner was an energizing hour with Dr. Becky Farley who put us through PWR! Parkinson’s Wellness Recovery moves and a boxing demo, featuring Jennifer Parkinson (yes that is her name) and me.  We ended with pranayana breathing (a form of yoga breathing) and a meditation.  We left her session refreshed after a long day of sitting.

At dinner we celebrated coming together with some great laughter thanks to the humor of Robin Morgan and some soul lifting by Maria De Leon, who talked about her journey as a Neurologist specializing in PD, who was diagnosed with early onset PD herself. Her book, Parkinsons Diva, and “The Peripatetic Pursuit of Parkinson’s” by the Parkinson’s Creative Collective graciously given to us by Katherine Huseman, another of the Fab 25, were our gifts to take home.  And for the finale, Ann Boylan, and three other brave women, performed a hula that she choreographed  specially for the evening.

As I return home, I look forward to working with Jennifer Parkinson to create a unique event for women with PD in Southern California.   More on that soon.

Why do I write?

200px-Musée_des_arts_et_métiers_-_Corona_typewriter
200px-Musée_des_arts_et_métiers_-_Corona_typewriter

For those of you under 45, you probably never had to write without a computer.  I always hated the process of writing.  When I was in high school and college, the first thing you would do is outline what you wanted to say.  Then fill it out by writing, ON PAPER, whatever your assignment was.  Once you edited your paper, you would then type it on your manual typewriter.  If you made a mistake, you would have to either correct it by using White-out or start the page over again.  Needless to say, it was a long, tedious process and I hated it.  I briefly considered law school but decided against it because of the writing involved.

Fast forward 25 years.  I became president of my synagogue and then another organization.  Writing a monthly column for the newsletter was part of the job.  But now I had a computer and could write and edit as I went along.  Wow!  This actually became fun.  I no longer avoided writing.

Now I have Parkinson’s Disease.  One of the side effects of either the medications or the disease, can be increased creativity, along with obsessive behaviors.  And that unleashed the need to write.  First I started writing for myself.   Because I also have a need to research whatever ailment I have, (my OCD) I became a resource to others who were newly diagnosed with PD.  As a result, I started receiving calls and emails from people asking me if I would mind talking to their friend or relative who needed information.  That is when I started writing for others.  I actually wrote about this in a previous post called Creativity and Parkinson’s.

That was the reason behind starting the Twitchy Woman blog.  I could satisfy the urge to write and reach out to others at the same time.  It has been a wonderful experience and as a result, I have connected with others across the US and in many other countries who have PD.  We share our stories and information about the latest research and treatments, and hopefully help each other find our way to living well with Parkinson’s.