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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?

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.

Waiting

I attended a conference this weekend where it was noted that it is the 200th anniversary of PD or at least when it came to be known as PD. In 1817, James Parkinson wrote an article on Shaking Palsy, today known as Parkinson’s Disease.  The next big development in the world of PD was the  development of Carbidopa/Levidopa as a medication to treat symptoms.  This happened in the 1960’s. In the 1990’s Deep Brain Stimulation surgery started  being used to treat symptoms. Lots of research is being done and newer treatments and meds are being used but there is still no cure.  And so we wait.  I’m not good at waiting.  I tend to be impatient and like to take action.  So while I wait, I exercise.  While I wait, I research.  While I wait, I participate in research.  While I wait, I educate others.  While I wait, I do everything I can to keep my body, mind and soul healthy.   While I wait, I am participating in this wonderful life that God has given me.  While I wait, I pray.  Waiting is allowing me time to find my purpose on this rollercoaster journey.  God is in the wait.  And so I wait.

My New Normal

Whether  retired or still in the workforce, we all have lives and having PD on top of that  only adds to the mania of daily life. No one wants to do Parkinson’s all day, yet we have no choice.   I am fortunate enough to only work part time but I often wonder how PwP, or other chronic illnesses, work full time and work on staying healthy.  My “new normal” involves going to the grocery store more often to get fresh produce and taking more time to plan meals. Long gone are the days of pulling through the drive thru to get a burger and fries when I don’t feel like or don’t have time to  make dinner.

Taking the time on the weekend to prepare food for the week helps keep me on track.

My “new normal” also involves finding time to exercise every day.  Sometimes I go to the gym, sometimes I go hiking, sometimes I go to yoga class and sometimes I can only eek out a half hour to ride my exercise bike or jump on my elliptical.  My “new normal” also involves many more doctor visits than I ever imagined, PD conferences, support groups, not to mention the hours spent doing online research. My “new normal” is crazy busy because I get to go to the gym, I get to go to good doctors, I get to go to grocery store, and I have access to a world of online resources.  Dare I say thank you for my “new normal?”  To be honest, I’m still working on that one.