There are Heroes Among Us

Feb. 22, 2018

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

Jan. 21, 2018

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

Jan. 13, 2018

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

Jan. 1, 2018

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

 

12/2/17
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.