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.

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.