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.

Seeking Self-Efficacy

“We can’t control that we have Parkinson’s, but we can control how we choose to live with it.” – Davis Phinney
A week after returning home from the Women & Parkinson’s Initiative conference, I am still on a high.  The most important thing we learned is how to be pro-active about how we let Parkinson’s control our lives.  We threw out the words “Perfect, Should and Normal” from our vocabularies.  We learned about the psychological effects of Parkinson’s and the benefits of exercise.  Most of the topics presented were familiar to me.  But the one thing I had not heard of before is “Self-Efficacy”.

Self-Efficacy was presented by Diane Cook, who was also one of the 25 women with PD selected for the conference.  Dr. Cook, who developed her own self-efficacy program based on the work of Dr. A Bandura, said that “Self-efficacy is the belief that one can achieve influence over the conditions that affect one’s life”.  When first diagnosed with Parkinson’s (or any chronic disorder), we have many challenges.  Psychological challenges can include shock, fear, anger,anxiety, depression and more.  We have physical challenges, such as tremor, falling and slowness, all of which can be made worse by stress.  We fear the stigma of PD when out in public and may withdraw and become isolated.    As a result, we try to hide our disease.

All of this was true for me.  My main symptom was a tremor.  I was constantly trying to hide it by putting my hand in a pocket, holding onto my purse straps or doing anything else that would make it less obvious.  I was afraid to tell people what was wrong.  As a community leader who often spoke in public I found it difficult for me to speak unless I was behind a podium, and even then I was sure people could see my tremor.  So I withdrew.  And became depressed.

IMG_0402
Dr. Cook’s Support System

Self-efficacy seeks to break that cycle by teaching us to change our behavior and take a greater sense of control.  We must become more pro-active about the healthcare we are receiving and develop a multi-faceted support network.  That network may include your Neurologist or MDS, a support group, physical therapist, a psychologist, masseuse, other doctors and especially your friends and family.  You need to find strength from within and increase your self-confidence with the help of your network.  Set goals for yourself and follow through.  Start with a series of small steps moving towards a positive outlook.  You can learn by observing others whom you see as successful role models living with the disease.  Seek positive reinforcement and encouragement from others.  This can be feedback from your peers or support group.  And listen to your body.

If you succeed, you can set higher goals.  A series of successes will give you more confidence and positive reinforcement. which in turn, will make you better able to manage the continual challenges of a chronic, progressive disease.

It took me almost 6 years from my diagnosis to become more open about having PD.  I took baby steps at first, encouraged by my MDS and my psychologist.  I learned to become more pro-active with my healthcare.  And sometime last year, it suddenly became OK to become more public with my diagnosis.  My confidence grew and I found that other people were seeking me out for help with coping with Parkinson’s, which eventually led to writing this blog to help others learn how to manage their disease.  Self-efficacy works.  Try it!

My apologies to Dr. Cook if I got any of this wrong.

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.