Yoga and Me

Yoga is a light, which once lit, will never dim. The better your practice, the brighter the flame.

B.K.S. Iyengar

This post was first published on the Brian Grant Foundation’s Power Through Project website on April 3, 2016

I often find it hard to relax.  I am almost always on the go.  My mind spins.  It is hard to shut down and let go.  One of the few places that I can truly let go is in yoga class.

Many days, class begins and I think I will never get through it.  I am tired from lack of sleep.  My muscles are tight.  Some days I feel like I am moving through molasses.  And then something happens.  My body is moving like it is supposed to.  My tight muscles have loosened up and my balance is working.  My foot may twitch with some poses, but it often settles down as my practice continues.  By the time I reach Shavasana, the final resting pose,  the elephant in the room that is Parkinson’s has gone away, at least for now.

There are many different types of yoga.  Vinyasa flow yoga works best for me becauseIMG_0681 of the constant movement through the poses.  I feel more graceful as I flow through my practice.  The deep breaths that we take as we move spread the energy throughout our bodies.  Sometimes the poses are challenging.  But I try them anyway, even if I don’t have the same flexibility as others in the class. The sense of accomplishment when I succeed in doing a difficult pose that I could not do before is extremely satisfying.  And other times, I must modify my poses because I recognize that I am no longer a healthy 30 year old who can do it all.  Some days my balance is off, others I am better than most.  King Dancer pose, a beautiful pose balancing on one leg with one arm outstretched and the other holding your raised foot, is an accomplishment.  I almost feel like a dancer!  At some point, I learned that I could do a head stand against the wall.  It feels wonderful.  It is as though my body is saying to PD “I am in charge here!”

The other, probably more important part of yoga for those of us with PD, is that it is meditative.  In many classes you begin with a short quiet pose, focusing on the breath.  The concentration on breathing continues throughout the session until the very last pose, Shavasana.  Lying quietly in a darkened room, often with soft meditative music or guided meditation from the teacher, prepares you to go on through the rest of the day feeling better in so many ways.

Iyengar yoga, which focuses on the longer poses, does not work as well for me, although some Parkie’s swear by it.  My body just wants to keep on moving, and long poses often cause my tremors to flare up.  As with any exercise, you have to find what works best for you.  If you don’t like it, you often discontinue the exercise.

I go to regular yoga classes at my local gym.  As long as I am comfortable in those classes and can keep up, I will continue to go.  I understand that many Parkie’s cannot do that.  There are many other types of yoga, so check to see what is available in your community and try a few different ones.  Many yoga studios and senior centers offer gentle yoga and chair yoga classes  for people with limited movement.  Ask your Movement Disorders Specialist to recommend a class if you cannot find one.  But give it a try.  Your body will thank you.

 

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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

Giving Thanks

In honor of Thanksgiving, I want to share 10 things that I am thankful for while living with Parkinson’s Disease.

10.   Getting by on little sleep gives us much more time to spend playing  games on our iPads in the middle of the night, while we are deluding ourselves into thinking that these games may actually help our brain cells regenerate.

9.  We can blame our Obsessive/Compulsive behaviors (see #10) on our medications and the non-Parkies will believe us.

8.  Waking up at 5:00 am doesn’t seem so early anymore.   But why am I always late to my 8:30 yoga class? (See #10.   Still playing those stupid games on my iPad)

7.  I can do things with my left hand now that I would not have been able to do if that damn tremor in my right hand didn’t act up when I am trying to do something like eating, writing, brushing my teeth……you fill in the blanks

6.  Living with PD has taught me to be more pro-active about my health.  I keep up with the latest research and always go to my doctor with a list of questions and concerns.

5.  All of the new friends that I have made who also have PD.  We can laugh and cry together about things that non-Parkies would never understand.

4.   Fortunately I have a slowly progressing form of PD, which is controlled by meds.  Better living through Chemistry is my mantra.

3.  Laughing with PD.  When all else fails, I can always blame stupid things I do on that !?@$#  tremor.

2.  Loving with PD means cherishing the life my husband and I have together and making adjustments as we need to when that @$#% Tremor gets in the way again.

1.  Living with PD has enabled me to reach out to others like you, hopefully making all of our lives just a little bit better

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.

Shavasana……….aaaaaaaah

I have been practicing yoga for about 8 years and it has really helped me to maintain my balance and flexibility. While I attend regular yoga classes, there are many classes in the area for people with less mobility, including chair yoga. Check with your local yoga studio to see if they have classes for special needs.  If they do not, they can often help you find the right place for you.  Find the type of yoga class that works best for you and try it for a few months. Start slowly.  We Parkies often try to do more that we are capable of, which can result in falls and injuries.  A few private sessions with a Yoga instructor who has experience working with people with PD or other chronic illnesses can help  you develop  a safe yoga practice that you can follow either at home or in a group class.. And do not skip Shavasana, the final relaxation pose, otherwise known as Corpse Pose.  It is an important part of the meditation practice that we all need to calm our PD symptoms.    Before I started taking meds for my tremors, I would find that during that last relaxation pose, my tremors would just disappear, often lasting long past the end of class.  What a wonderul feeling!

Some days I drag myself to yoga class, thinking that maybe I will stay only a few minutes.  Occasionally I do leave early if I am really having a difficut PD day.  But most of the time, I slog through it, only to find that I feel 150% better by the time class is over. And even on my worst days when my balance is not that great, I see that there are others having the same problems.  And they don’t even have PD!

Try Yoga.  I guarantee that it will make a difference in your life.

The following article from the Michael J Fox Foundation says it better than I can. But I know from experience that it really works.

FoxFeed Blog

Yoga for Parkinson’s: What the Research Says

Posted by  Kaitlyn P. Roland, July 01, 2015

Yoga for Parkinson’s: What the Research Says

Kaitlyn P. Roland completed her PhD research at the University of British Columbia (2012), which measured Parkinson’s disease (PD)-related changes to daily muscle activity and consequences for physical function and frailty. She is currently a postdoctoral fellow at the University of Victoria¹s Centre on Aging and her most recent work examines care needs and well-being in PD dementia caregivers. Kaitlyn offers yoga workshops to persons with PD called “Yogadopa” and blogs about Parkinson’s, aging and yoga-related information at http://yogadopa.com. Overall, she aims to support independent living, and reduce distress and healthcare utilization in persons with PD, dementia and their caregivers.

Yoga continues to rise in popularity and is cited as a favorite non-medical therapy by many living with Parkinson’s disease. Getting started can seem challenging, as it is often portrayed with pretzel-like contortions and trendy #yogaselfies on social media. But, yoga is an adaptable practice, with both functional and psychosocial benefits, that can be suited to a variety of abilities.

Yoga has become synonymous with holding and moving between a series of static postures (called asanas); however, this physical practice (called hatha yoga) is only one part of the larger yoga framework that includes branches such as philosophy, chanting and selfless service. Hatha yoga combines physical postures to address strength, flexibility, balance and mind-body-breath connection. Breathing practices (pranayama) and meditation are included to develop greater self-awareness.

What do we know about yoga for people with Parkinson’s?

In looking through the scientific literature, there are a few studies that support hatha yoga for persons with PD. This is clearly an area of research that is just starting to gain ground. What studies do exist suggest modest benefits for:

Mobility. The issue of mobility has important implications for falls in PD. Yoga participation can improve functional mobility and how a person with PD walks. Standing yoga poses target the hip extensor, knee extensor and ankle plantar flexor, which support center-of-mass during walking and may improve overall stability.

Balance. Balance training is an important component of PD therapy, as 40 percent of nursing home admissions are preceded by a fall. Research shows yoga-related improvements in balance (tandem, one-leg) and an associated reduction in fear of falling; this can also help keep people with PD active in their community.

Strength. Gains in lower-body strength occur for PD patients following yoga practice and are associated with improved postural stability. Yoga requires isometric contraction (i.e., the joint angle and muscle length do not change) of specific muscle groups to stabilize the body as one performs the postures, and may mimic isokinetic contractions (i.e., variable resistance to a movement performed at constant speed) when performing controlled systematic movements from one pose to the next. These mechanisms may be the reason why yoga improves muscular strength.

Flexibility. Improvements in flexibility and range of motion (ROM) are important since rigidity is a common clinical manifestation in PD. Research shows improvements in flexibility/ROM of the shoulder, hip and spine. Stooped posture is characteristic in PD and can be related to short spinal flexors and weak spinal extensors; improved shoulder and spinal flexibility from yoga supports a more upright posture. Greater hip mobility from yoga may translate into improvements in shuffling gait experienced by many living with PD.

Mood & Sleep. The psychosocial benefits associated with yoga are important for disease management, as they are not often addressed with conventional dopaminergic therapy.  Yoga can offer group support, improved confidence and self-efficacy. The calming effect of yoga (by enhancing parasympathetic output) may lessen perceived stress, enhance relaxation, and benefit sleep in PD.