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: Brain Storms

IMG_0152-1I have been listening to books on Audible for a while now, usually when I am walking or driving.  Few have kept my interest like Jon Palfreman’s new book Brain Storms, The Race to Unlock the Mysteries of Parkinson’s Disease.  Unlike other audiobooks, I rarely had to back track to find out what I missed while distracted by something else.  The book was engaging, informative and written in language that a reader with no medical background could understand.

Palferman was diagnosed with Parkinson’s at about the same time that I was and at about the same age. He also seems to have had a similar trajectory in the progress of the disease.  He is a medical science journalist, and in that role, he oftened covered scientific discoveries leading to treatments and cures of chronic diseases.  Thirty years ago he produced a documentary film for Nova, The Case of the Frozen Addict, about drug addicts who had developed Parkinson’s like symptoms as a result of bad street drugs.   He is also a professor of journalism at the University of Oregon.  His diagnosis, like mine, initially led to denial, secrecy, depression and isolation.  He was determined to hide the disease for as long as possible.   I can’t imagine anyone shouting to the world that he has just had been diagnosed with Parkinson’s Disease.  After all, the image of Parkinson’s conjurs up an elderly person, shuffling with a stooped back, dementia and an obvious tremor.  This is not a disease anyone looks forward to having since we can only treat the symptoms.  There is not yet a cure or even a guaranteed treatment to slow down the progression of the disease.

Through the book, Palfreman confronts that image and turns it upside down.  He discusses the sea change that occurred when  Michael J Fox set up his foundation to find a cure now.  He interviews Parkies who have made it theirs life’s mission to confront the disease and live with it on their terms.  One example includes dancer Patricia Quinn, who developed a dance program to counteract her symptoms and continues to live well many years later.  He has also interviewed others who have deteriorated rapidly and even goes so far as to project what his future will bring as a result.

Palferman also talks abut the fascinating history of the disease, beginning with descriptions from the ancient Greeks, leading up to James Parkinson’s famous essay on the Shaking Palsy nearly 200 years ago.  He talks about how treatments were developed, and even chronicles the descendents of a family in a small village in Italy who were essential in helping to discover genetic markers for PD.  Because the book was just published, he goes into great detail on the latest research about repurposing drugs for other diseases that have been somewhat successful in reversing PD in limited trials.  This is exciting news that has been talked about all summer.  Because these drugs have already been FDA approved for other diseases, the approval process is shortened significantly, if researchers can get enough patients to conduct Phase III trials.

He ends the book with a bright future for those of us with PD as a result of the flurry of discoveries made in the last few years about PD and treatments for slowing down and ultimately reversing the disease.

And finally, this is a very personal story about living with Parkinson’s disease and how a chronic disease will change a person’s life forever.    That change can be positive, which is something I have heard from so many people with Parkinson’s.  Once we get throught the denial, we can move forward and live our lives fully.