Looking Through the Raindrops

I spend lots of time reading about Parkinson’s treatments.  After all, my quality of life depends on it. It’s like looking through a rain streaked window.  Everything is blurry, but once in a while, you catch a glimpse of something clear and you get hopeful that the sun will break through and make everything clear.  Then more rain falls, and that glimpse disappears and we wait for another peak of clarity and get our hopes up again.

In my head, I hold on to the clear pieces that I have seen and try to fit them all together.  In my head, the researchers have squeegees and are trying to fend off the downpour of toxins, bad genes, head injuries and  whatever else they think might be causing PD. (Aren’t you glad you don’t live in my head?  It can get pretty weird in there!)

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Living in the Moment

Even before I was diagnosed with Parkinson’s, I think I was always one of those people who was worried about tomorrow.  What is going to happen next?  Will things go according to plan?  I needed everything to be in my control.  Ha!  The person that said we plan and God laughs was right.  It seems that very little is in my control.  God has a plan.  Darned if I know what it is, but I know it is good.  I heard a quote from writer and producer, Norman Lear recently.  He said,

“We don’t pay enough attention to the words over and next.  When something is over, it’s over and we are on to next. If there was a hammock between over and next, it would be living in the moment.”

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Happy Anniversary?

Anniversaries are usually happy and joy filled.  They are also times for reflecting back over the past year.  Well here it is.  I am coming upon the second anniversary of my PD diagnosis.  That day two years ago was anything but happy and joy filled.  It was terrifying and fear filled.  My first year of PD was a very bumpy rollercoaster with many more out of control twists and turns than I would have liked but this second year has leveled out and there have even been some very happy high points.

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Something Needs to Change

The research is out there.  The case studies are available. Exercise helps those with Parkinson’s.   In my opinion, it isn’t just beneficial, but it is necessary if you want to live a full life with PD.

I know the docs are busy but this isn’t brand new research and those being  diagnosed need to know that exercise will help them and the sooner they start, the better.  It is crucial that the word gets out to the patients…those who live day in and day out with this disease. They need to know it on the day of diagnosis.  How do we get the word out if the doctors aren’t telling the patients?

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Not Your Grandfather’s PD

April is Parkinson’s Awareness Month, a time to shed new light on this jumble of symptoms that we label a “disease.”  If you ask people what they know about PD, many will say that it is a disease that old men get that makes them shaky, stiff and unable to walk.  That may have been true for most people with PD years ago but things are changing.

The average age of onset is 60 years old and  according to the Fox Foundation, 10% of PWP are diagnosed before age 50. So much for it being an old person’s disease.  Sixty thousand new cases of PD are diagnosed each year and men get PD at a rate of 2:1 compared to women. That means that there are a lot of both men and women suffering with PD.

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Fight Like a Girl

International Women’s Day

 Men are diagnosed with PD almost twice as often as women.   I get the honor of being in this minority of females.   I never chose this group.  I had no choice.  I do have the choice in responding to it.    I choose to not sit back.  I choose to educate myself and others.  I choose to not  be a victim.

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The Fortunately Unfortunately Diet

Have you ever told a fortunately, unfortunately story?  I used to assign this to young writers to get their creativity flowing.  Fortunately, I am still around today to write about it.  Unfortunately, my storyline has changed.  Lately it goes something like this.

Unfortunately you have a chronic illness.  Fortunately, you can change your diet and you will feel better.  Unfortunately, you will have to give up some good stuff…sugar, gluten, dairy.  Fortunately, you can eat all the fruits and veggies you want.  Unfortunately, many of those fruits and veggies are covered with pesticides.  Fortunately, organic fruits and veggies are available, although…unfortunately, very pricey.

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Rx for Hope

I heard it again today.  I hear it every day lately.

“My doctor said I have PD.  I left with a prescription for meds that I know little about and go back in three months. I’m shattered and don’t know what to do from here.”  

This happened to me too almost a year and a half ago.  I get it now.  The doctors don’t seem to.  I’m praying that the neurologists out there somehow get the message.  What we need is a prescription for hope.  I’m not asking for false hope but even just a glimmer of something that we can do to fight back.  Just because today is miserable doesn’t mean every day will be miserable or worse.  Having PD means something has gone wrong in your body.  Not everything, but something.  The day of diagnosis is the day you should be given the resources to optimize your health.

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SCREW YOU PD

As the new year starts, I can’t help but look back to where I was a year ago.  I was still reeling from the “you have Parkinson’s Disease” conversation with my doctor.  I was in the midst of figuring out which meds worked for me.  I was still hiding my diagnosis from all but my closest friends.  I was stricken with anxiety about the battle that lay ahead.  PD is a “progressive, neurodegenerative disease.”  To me this said, today is the best I’m ever going to feel.  I will get worse with each passing day…well, SCREW YOU PD!  I don’t know exactly when it happened but at some point I decided that it didn’t have to be that way.  I decided to fight back.

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