Living in the Moment

October 14, 2018

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 overand 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."

When you have a chronic illness, whether it be PD, or something else, it can be hard to live in the moment.  Stories of what the future may hold can be scary and the unknown is downright frightening.  I think the key here might be not worrying about the unknown.  We don't know what the future will be.  It just might be better than we ever imagined.  How awful to spend our time imagining the worst when it may never come to be.  One of my favorite singer/songwriters is Jason Mraz.  In his song, Living in the Moment, he says,

"I will not waste my days

making up all kinds of ways

to worry about all of the things

that will not happen to me."

If you have never heard the whole song, it is definitely worth a listen.  I'm going to try harder to not think about nextand try to take in all the nowthat I can.  I know it won't be easy but challenges stretch us and make us grow.  This moment, right now, is enough, and I am going to live in it the best I can.

Lyrics to Jason Mraz's Living in the Moment

Happy Anniversary

Aug. 30, 2018

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.

During this past year, I became a certified Rock Steady Boxing coach and  a Parkinson's Ambassador.  I also started this website and blog. I have embarked on a mission to let others know that having PD isn't the end of the world and you CAN do something about it.   I did not choose to get on this rollercoaster but I am on it anyways so I am going to make the most of it.  Although I am still fairly early on in my journey, here are a few things that I have learned (so far) along the way:

You can only help others if you help your self first.  Self-care is not self-ish.

Smiling feels awesome!  (Not only is it contagious but it is really good for your facial muscles!!!). Try it right now...see, don't you feel better?

Hard work is hard work!  Do it anyways, you will feel better after.

Hold on tight.  Life with PD is bound to have its speed bumps.  Slow down when you need to.

Build a tribe of support.  Help others in your tribe when you are able and don't be afraid to let them help you.

Food is fuel and food is medicine.  Treat it as such.

I always say God makes cool stuff...and he made me, so therefore, I must be cool. (My kids may not agree with this one).   I will embrace my cool factor by being silly and having fun and not taking life too seriously.

Every day is a gift.  Treasure each and every moment.

Something Needs to Change

June 22, 2018

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?

It is  left up to the patient and/or care partner to do the research and find out for themselves.  On top of dealing with a life changing diagnosis, you now have to do your own research, be your own advocate, and find your way to better health on your own.

I wish I could personally appeal to every neurologist out there and show them the research and show them what I have done for myself and tell them what I have seen in others.  I don't know if they would even listen or believe it's true.  Maybe we need to bring Parkinson's patients into the medical schools and nursing schools to bring awareness and show them real living examples of the benefits of exercise.

If you sense frustration in my writing, it is because I hear of patients  who have been living with PD for months or sometimes years and are not aware of how they can help themselves.

I'm not sure of the solution to this problem but we need to work together to figure it out.

Not Your Grandfather’s PD

April 4, 2018

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 bothmen and women suffering with PD.

Although no cure is forthcoming, research is being done and treatments are being developed to manage the symptoms and slow down the progression of the disease.  Yes, research is showing that it can be slowed down!  Studies are now showing that exercise can slow the progression of PD. We now have many medication optionsand for some of us, even surgical optionsto reduce symptoms.

We have work to do to stay healthy while we wait for that ever elusive cure but at least we have options available to us.  For me that means hope...for a higher quality of life, for a full future, and yes, someday, for a cure.  This is no longer my grandfather's PD, it is mine and I will fight it with all I have.

Fight Like a Girl

March 9, 2018

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.

I choose to count the blessings I do have in spite of my PD.  I choose to fight.  I now know many women with PD who join me in this battle and they are mighty warriors.  On this International Women's Day, I recognize them and cheer them on.  Fight like a girl ladies because girls are strong and powerful! I am honored to fight beside you.