Parkinson’s Awareness Month

We have all been inundated with emails from different websites stating that it is Parkinson’s Awareness Month and encouraged to share our experiences on Facebook and other social media sites.  For me, it took a long time to come to terms with the diagnosis before I could even tell a few of my friends and family about it.  And even longer to get the word out to a broader audience.  Only when it became obvious that something was wrong and people started asking did I begin to open up.  Six years later, it is still difficult.

When I started writing this blog, it was a big step forward for me.  As my therapist reminded me, it wasn’t too long ago when I could not share with anyone.  Somehow, sharing my thoughts with others with PD is comfortable.  That is what Support Groups are for.  But I still can’t go the Facebook route, other than in closed PD groups, such as the one for Rock Steady Boxing NY/LA.

How do you handle this issue?  Please share what works for you.  Were you comfortable enough with your diagnosis to share with others immediately?  Or are you like me, still hesitant after many years.  It is a difficult issue, especially when your symptoms are under control and not very visible, like mine are at the present time.

The APDA wants us to post this on our Facebook photo.  Did you do it?  I still can’t.  Maybe next year.


3 responses to “Parkinson’s Awareness Month”

  1. I was diagnosed in June ’14 and it was the diagnosis I dreaded, but expected due to the classic tremors. My fear was that I’ll become an awful burden to my husband. We shed some tears and shared our honest feelings. “How did this happen…to me??” However, along the way I’ve let go and accepted my disease. My mantra: 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. For now, I’m just trying to remain positive and adapt to my symptoms (tremors in one leg and both hands). I have a lot to be thankful for: a loving supportive husband, caring family and friends who keep me in their prayers; a new home in sunny Scottsdale; I love that my RX is exercise and I’ve just volunteered to help market Barrows/MAPC ’16 5K. (I raised $2600 my first PD 5k in Jan. which I posted on FB.); and I’ve participated in a clinical genetic screening. I’m sure you guessed by now — I’ve blabbed to my network of peeps and sometimes I even crack jokes about my twitches. I can’t hide it so what other choice to I have? But every single day…..I pray for a cure!

  2. I immediately was able to inform others that I had been diagnosed with Parkinson’s, possibly because I was 77 years old, retired / unemployed, and after a lifetime of tension about what others might think of me, in the various political / governmental / teaching roles I filled in my life – I now no longer “gave a damn” about superficial opinions from others. What difference could / would other’s evaluations of me mean? Now, at 80, I am happy to be myself, and if that means Parkinson’s Disease – so be it!

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A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.