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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.”

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 next and try to take in all the now that 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?

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

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 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.

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 options and for some of us, even surgical options to 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

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.

There are Heroes Among Us


Today, I learned about a hero. His name is Tony and though his  name may never be a household word and you may not recognize him on the street, he is a true hero in my book.    Today he is undergoing experimental DBS Plus surgery.  We live in an incredible time of medical advances.  Every day scientists find new treatments  and sometimes even cures for horrible diseases.  Along that journey, real people are volunteering to try out these treatments before they are proven to help or not.  These heroes are real folks like you and me suffering from a plethora of illnesses.  Today, I thank God for Tony and for his courage.  I thank God for those who have been there before him getting poked and prodded in the name of research.  I thank God for the doctors that are in the middle of the battle with us and refuse to give up.   Tony, you are a brave, valiant warrior.  You have a prayer warrior in me that is forever thankful.   I pray that if the opportunity ever presents itself, I can be as brave as Tony.

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.

Unfortunately, you will have to give up meat.  Fortunately, not all the experts say to give up meat. Unfortunately, some experts say you should only eat organ meat (liver, gizzards etc.) Fortunately, the previous experts said you shouldn’t eat meat so you don’t have to eat liver. Just make sure that any meat you do eat has been raised on grass grown by leprechauns and that any poultry you eat has been sung to sleep at night by angels.

Unfortunately though, you will have to stop cooking with vegetable oils.  Fortunately, the experts say coconut oil is ok to use instead.  Unfortunately, other experts (your  doctors) say that coconut oil is a definite no-no and will raise your cholesterol.  Fortunately you can lower your cholesterol by eating Amla (gooseberries).  Unfortunately, they are grown in  India and you will need to find an Indian grocery story that carries them.

Fortunately, what you can’t get from your food, you can get through supplements.  Unfortunately, you never know what you’ll really be getting in those supplements.  Fortunately, there are any number of complete strangers online who will tell you which ones to buy (and even sell them to you).  Unfortunately, they are not really the experts.

Fortunately, you will eventually figure out what to eat to help you feel better but be sure you don’t wrap it in aluminum or store it in plastic…don’t even get me started on that one.

Fortunately, I can now go feast on some water and kale.  Unfortunately, the water must be triple filtered and the kale must be grown in virgin soil in my backyard.

 

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.

My Rx for hope:

You are about to go into battle.  It is time to arm yourself.  You need to be strong.  Take care of your body…exercise.  If you never have, now is the time to start.  Move a little more each day. Don’t try to do it on your own.  Find a PD group to keep you motivated. Take a good look at your diet…with a professional.  Your food is your fuel and your medicine.  Treat it as such.  It might not be fun but fighting is hard work.  And of course, don’t forget your meds.  We might not like them but they often help.

Arm yourself with knowledge.  A good soldier knows his enemy well.  There is so much to know and it can be overwhelming to try to do it alone.  Build a healthcare team that will work together to do what is best for you, the individual.

It’s hard to fight a battle with little motivation.  Keep focused on the good things in life. Faith. Family. Friends. Joy. Love. Laughter.  Life is going to continue whether you have PD or not so don’t sit out.  Stay involved.  Get inspiration from what you see in the world and inspire others.

You CAN do this.

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.  It hasn’t been easy; in fact, it often feels like a full time job but my life depends on it.  Compared to a year ago, I am less stiff, my tremors are less, my gait is better, I sleep better, my energy is greater, I am stronger, I feel healthier,  my motivation is through the roof and I am helping others with PD.  God is walking right beside me on this journey and I can do anything when I keep my focus on Him.  I don’t know what this year will hold or what God has planned for me but I am excited to see how He is going to use me.  Together we will defy the odds. Here we go 2018.  Bring it on!

The Look

Today I got “the look” again when I mentioned to someone that I have PD.  The pause, the brow crinkle and this confused, uncomfortable, pity look.  If you have ever shared your really bad news with someone, you may have seen “the look.” Many people don’t know what to say when you tell them something like this and hence, “the look.”  They don’t know how to react and often cut out of the conversation quickly.  Guess what?  It’s ok.  Most people don’t know how to react and “the look” is something that just happens.  Today, I got a nice surprise.  The person that gave me “the look” asked me if it was ok if he asked me about my PD. We talked about my diagnosis and he wanted to know what I was doing for it because he couldn’t tell I even had it. It was a great opportunity to educate him on PD and its current treatments (both traditional and alternative). I think I surprised him when I told him that it wasn’t that bad and there were lots of worse things to have.  I let him know that prayer gets me through the day, that  I am doing well and fighting back. I’m happy to share my journey with others.  You never know what ripples you may cause when you share your journey… and most of us have journeys of one kind or another.  So next time you see “the look,” try not to see it as something negative, but as an opportunity to educate and maybe even inspire.