Shoes……

I got this quote from my friend, and fellow Parkinson’s blogger, Dr. Maria de Leon, who writes about the importance of shoes in the life of a Parkinson’s Diva.  In fact, the logo on her website is a pair of red high heel pumps.  Many of us love our shoes, and hang on to those beloved pairs even though they are collecting dust in our closets.  You know the ones.  The sparkly high heels that you wore to your daughter’s wedding.  Those amazing strappy sandals, with the skinny 4-inch spiked heels that looked so great with your favorite dress. And those Manolos, Jimmy Choos, Pradas or Christian Louboutins

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Bye bye heels

that we spent a fortune on but can no longer walk in.  They sure made us look fabulous!  We just kicked them off under the table at dinner to get some relief and put them back on when we had to get up.

But the reality is that Parkinson’s and age have made those shoes more difficult to walk in.  So the time has finally come to part with those shoes.  And finally recognize the fact that we do have to make some changes in our lives because we just are not 25 anymore.  So the shoes are going to a resale shop, to be replaced by stylish 2-inch heels that don’t help make me look taller, but at least I can walk in them, safely and comfortably.

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Hello comfort!

Remember the stores that sold Orthopedic shoes?  All those ugly black lace-up shoes that our great-grandmothers wore.  They don’t exist anymore, thankfully.  They have been replaced by stores selling “comfort shoes” and some of them actually look good.  Because styles have changed so much, it is rare that we need to wear “dressy” shoes anyway.  A cute pair of ballet flats will go with just about anything.

So I bid a tearful goodbye to those shoes I can no longer wear and look forward to shopping for some fabulous, comfortable new shoes.  After all, a girl must look great in her shoes, no matter what height the heels are!

At a loss

I seem to be losing things on a regular basis.  And not just my mind.  I keep leaving things at restaurants, at the gym.  Most of the time I am able to retrieve the lost article.  A scarf, a sweatshirt.  Other things are just gone.  I lost my Fitbit somewhere in Washington DC last week.  I will never see it again.  I miss the alarms on the Fitbit to take my meds.  And now I sometimes forget to take those too.

But the latest mishap occurred at the spa at my gym.   My back was bothering me after the long flight home, so I scheduled a massage.  It was wonderful.  I had put my rings and watch in the pocket of the spa robe and reminded myself to take them out when I got dressed later.  I was so relaxed after the massage, that I put on my  watch and then forgot about the rest.  I returned the robe to the spa and went home.  Later that evening I realized that I wasn’t wearing my necklace (also in the pocket of the robe)  I called the gym early the next morning and went later on a search mission, checking the pockets of the robes that had come back from the laundry.  No luck.  No, I am not the only one that this has happened to.  They said that most of the time, things show up within a couple of days.  But so far, nothing.

It is beginning to seem like I need a checklist to make sure that I have all of my belongings when I leave any place.  This was never a problem before.  At least not this frequently.  Is it the Parkinson’s?  Aging?  Actually, this reminds me of a story my friend and fellow Parkie,  Dr. Maria de Leon wrote about in her book Parkinson’s Diva.  Her story occurs after a massage too.

After a massage, she got dressed quickly and then  “As I was walking towards the Ladies Room, I felt a chill, which I promptly ignored;  after all it was winter and extremely cold outside.  As I passed through the corridor, I noticed all eyes were on me, which I ignored and continued to the bathroom.  I did wonder briefly why everyone seemed so fascinated by me today.  Upon entering the bathroom, I realized the reason.  I had forgotten to put on my blouse!  I was parading about wearing only my lacy red bran and leather jacket, which happened to be wide open.”

Maybe the moral of this story is that we should either forget the massage or find that we leave our brain on the massage table and suffer the consequences.  Now where did I put my keys??????

$_35

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.

Book Review: Livin’ La Levadopa

Your journey begins now in finding your rainbows behind the storm known as Parkinson’s Disease

Maria De Leon, MD

I met Maria de Leon last month at the Women & Parkinson’s Initiative Conference sponsored by Parkinson’s Diva was recently published and is a must read for every woman with Parkinson’s.

Maria de Leon, MD, was a neurologist treating Parkinson’s patients for more than 20 years when she started experiencing many of the same symptoms as her patients.  Because most of these were non-motor symptoms,  not the traditional PD tremor , she and her husband, also a doctor, thought she was just overworked.  But a consultation with a friend with whom she had gone through residency with confirmed that the problem was in her BRAIN, not her HEAD.  Maria was diagnosed with Young Onset PD, which changed her life forever.

Parkinson’s Diva is a result of much soul searching after her diagnosis and forced retirement from practicing medicine.  Her insightfulness, warmth and humor, along with a good dose of medical information, research and strategies for living with PD, make this book  a must read for all women with PD.  The  book is filled with anecdotes that will leave you laughing out loud, practical advice from treating Parkinson’s patients for so many years, and even some of her favorite recipes.  She is always seeking the rainbows behind the storm, gently nudging you to follow her on this journey to living well with Parkinson’s Disease.

As she states in the very first chapter, women with PD must be pro-active and educate themselves to ensure better quality health care for several reasons. Most importantly, Gender differences in symptoms, research and treatment have not seriously been looked at before.  Most research in the past has focused on men with PD, not women.  Dr. de Leon states that Estrogen may play a large role in how women present their symptoms and how they respond to medication.  Much more research needs to be done in this area to help identify PD earlier in women so that effective treatment can begin sooner.

Dr. de Leon describes herself as a Parkinson’s Diva, which she defines as a lady of distinction and good taste, with some chocolate thrown in for good measure.  She encourages you to “live la levadopa” to the fullest and do not sweat the small stuff.  As women, wives and mothers, our needs often come last, but we must remember to take care of ourselves first.  Put on your favorite red lipstick and show the world that you are still you and you have much more to contribute to the world, even with PD.  Take charge of your life and embrace your inner Diva.

Check out Maria de Leon’s website at http://parkinsonsdiva.org/

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.