Riding it out

“Float like a butterfly, sting like a bee. The hands can’t hit what the eyes can’t see.”
Muhammad Ali
At age 74, Muhammad Ali died last night in an Arizona hospital from what family members said was a respiratory condition related to his Parkinson’s disease.
He was so strong, so fast, so beautiful (really beautiful), so charismatic, so smart and so witty.  He was inspirational.  Who can forget his most memorable quotes, such as the one above.  It is hard to believe he is gone, and harder still to visualize him after Parkinson’s took such a toll on him.
And his passing points out one of our greatest worries and one of our greatest challenges.  When living with a chronic disease we are torn between, on the one hand, making sure we are taking the best care of ourselves that we can, but on the other, not getting melodramatic and overwrought about the aches, pains and other issues that are simply part of aging and life.  It is a tough balance to strike.
After an extended period of feeling really good with my PD symptoms minimized, along came a cough, some chest pain and some internal tremors (try explaining that one to someone who does not have PD).  I got scared.  Was it a heart attack?  Something else?  A trip to the doctor confirmed that my heart and lungs were fine.  The pain may have been a flare up of costochondroitis, an inflammation in the joints where the ribs meet the sternum.  I have had that before and it eventually went away.
We then left for a long trip, planned long ago.  The pain remained.  Some extended rainy days made it worse.  At this point, part of your brain tells you it’s nothing and to ride it out.  Another part is screaming at you that the PD has taken a turn for the worse.  So you ride it out.  But you’re scared.
On returning home, I went to see my doctors just to make sure that nothing serious was going on.  The pain was pretty much gone and the tests have ruled out the most serious and obvious and scary stuff, but the investigation continues into what was causing the symptoms.  And as I feel better, the “ride it out” side of the brain starts to build confidence and subdues (but does not eliminate) the panic side of the brain.
This is a description, not a complaint.  It is the process that anybody with a chronic disease or condition must grapple with.  And the best way to deal with it that I have found is simply to get gritty about it. Listen to the debate in your own head and get the best medical advice you can, take the best care of yourself that you can, exercise the most mature judgment that you can and then decide you are going to ride it out.  Take a step (or two or five) back in your activities; curl up with a good book; let you body — and mind — rest.  And when you can, crank up the mental and physical activity with the goal of getting first back to where you were and then even better than that.  That’s my plan. I’m going to ride it out.  And it’s working already.




6 responses to “Riding it out”

  1. My eyes are filled with tears. One, because along with so many others, I’m mourning the loss of Muhammad Ali — a real fighter and PD role model. I am also honored and grateful that I have the opportunity to attend the top-rated MAPC, But this entry truly got my attention because your detailed description of “riding the storm” is eerily something that I can so personally relate to. Most recently…I spent Memorial Day in ER diagnosed with DVT–deep vein thrombosis. I think my symptoms began following a bout with a respiratory flu that really dragged me down for a few weeks. Those lasting symptoms prompted my questions: “Is this the PD “fatigue” they talk about?! Uh oh, are my legs experiencing PD rigidity? Does it happen that quickly–practically overnight? ” Confusion, anxiety, fear and stress start to dominater while trying to “ride out the storm.” And really, how many complaints can my dear husband tolerate?? BTW, during my stay they also indicated that I had lesions on my liver and nodules in my lungs which clearly are unrelated to PD. My response to the Doc. “Hey only one to a customer!” I especially dislike when experiencing symptom(s), such as the burning, sharp and dull pains attacking my stomach, many often attribute it to…”It’s your PD and/or meds. This is one tough nut to crack and that’s why it’s vital that we stay strong, count on faith, remain positive, be kind to ourselves and dig deep for that sense of humor. God Bless!

  2. barbaramrubin@gmail.com Avatar


    Best, Barbara M Rubin Sent from my iPhone


  3. I always follow your blog and wanted you to know that this post resonated with me. I am going to try and develop some grit! Thanks

    1. Your welcome! I am glad you enjoyed it.

  4. Martin Mandel Avatar

    Sharon, as usual you have put your feelings into words. You might also enjoy Ali”s 30 famous quotes that I posted on Google+. More than one also applies to your journey with PD. Love, Marty

  5. As usual, beautifully expressed with frankness, honesty and truth. YOUR truth. You have a lot of grit, girl. Thinking of you. Linda in Bloody Hot Tucson.

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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.