The View From the Other Side

I have found that it is rare to find in any blog, how family members see their loved one who has PD.  After a very interesting conversation yesterday with the wife of a man with Progressive Supranuclear Palsy (PSP), a very rare form of PD, and hearing how it has affected her life, I thought it would be interesting to hear from our families.

For Mother’s Day, I have asked my daughters and my husband to each write a little something about how they see PD affecting me, and their lives.

I would love to hear from your family members as well.  Please ask them to write how they see your life has changed, or theirs, since your diagnosis of PD.  I will be happy to share all of your stories

This is from my husband, Joel:

Sharon asked me to comment on how her life/our lives have been made different by PD.  While it is hard, even dangerous, to answer hypothetical questions, the answer seems pretty clear:  PD might (might) have impacted our daily routines and activities, but it has not worsened the overall meaning or quality of our lives.  It might even have made it better.

The cards that life deals us are revealed to us over time.  We get some aces, some deuces and some of everything in between (and Sharon drew a joker as her husband), but regardless of the mix, we have to play them as best we can (we don’t get to draw new ones, or trade away the ones we don’t like) and what sets some of us apart is how we play those cards, both the good and the bad.

Watching Sharon play her recent unfortunate string of health cards has been humbling and inspirational; hell, it’s even been fun.  There is nothing that PD is preventing her – or us – from doing with or in our individual or collective lives.  She has met it head on with ferocity (she is more physically, socially and mentally active than ever).  With intelligence (she seems to know as much, if not more, about it than her doctors). With humor (using the nom de plume “Twitchy Woman” (though we disagree about which one of us coined that appellation)).  And, above all, with grace (she shares what she is going through for the very purpose of inspiring others).   She has her down moods but they are rare and they are short.  Our friends marvel at all she does.  So do I.  And I struggle to keep up.

The fun part?  She is taking boxing.  I’ve watched her workouts a couple of times and came away  laughing AND in jaw-dropping wonder both times.  She is amazing.

Oh, and she’s still unconscionably gorgeous.

And from my daughter, Jennifer:

My mom asked me to talk about her life since her Parkinsons diagnosis, how she has changed. But I don’t see it as change. I suppose I could talk about how she has become a creature of habit with her yoga addiction in order to help keep the tremors at bay, but really when she asked me to write this, all I could think was “my mom became superwoman.” 

About 6 years ago, my mother was diagnosed with Parkinsons Disease. At the time, this was just one thing in a string of awful things my mother had to endure regarding her health (fibroid tumors, adhesions, breast cancer, a broken ankle). I remember just taking it in as she told us. Knowing it was awful, and not knowing how to feel about it, but also not reacting. I think I thought that reacting would just make it harder for all of us to hear, so I didn’t.

She let us know it wasn’t degenerative, which I suppose is the best a person can hope for with such a scary diagnosis. Things were only made worse when my grandmother’s health went into decline and my mom was not only dealing with her own problems, emotional and physical, but my grandmother’s as well. So everything awful happened to my mother in a short period of time, and talking to her, you’d never know it. The brave face she put on was not just believable, it was sincere. She took control of the disease and not the other way around. She didn’t stop doing the things she regularly did – instead she kept doing them, traveled to see my grandmother on the regular, traveled the world, and on top of it became more knowledgeable about the disease itself. She showed us how strong a person she is by never letting this or any diagnosis stop her from living her life. So how did my mother change since her diagnosis? She became stronger because she had to, and she became an example of how to gracefully take what life gives you even if it’s not according to the plans you have for yourself.

Both of these made me cry.  I am so fortunate to have them here to help me on this journey.

Sharon (Twitchy Woman)


4 responses to “The View From the Other Side”

  1. Twitchy–this too made me emotional. It’s a blessing to be surrounded by the love, care and comfort of family. Their letters painted such an inspirational picture of you as one of the best PD role models around. Bravo! Thanks for uplifting messages and reminders to live our lives with gusto!

  2. myrna specktor Avatar
    myrna specktor

    Wow, what touching and wonderful responses from your husband and daughter about their response to your parkinson’s diagnosis, and determination to live an enhanced life. Its clear you are doing a terrific job and your family loves you so very much!! I deeply enjoyed your sharing
    their thoughts.

    1. Myrna
      thank you so much for your support. You are definitely one of my heroes! I love the fact that we met at a Boxing gym of all places. Our little group is very inspirational to me. See you next Tuesday.

  3. What beautiful tributes from your husband and daughter. You are truly inspirational and brave. Nothing is easy or good about getting older and unexpected failings (except grandchildren and senior discounts). I applaud your sharing your story with honesty and humor. Linda C.

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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.