F

To all my fellow Parkies out there. This is for you! If you do not know what a Parky is then you are missing out on some of the greatest people I know.
My fellow friends with Parkinson’s Disease, I had my 4 hour cognitive ability test yesterday as one of the measures to determine if I’m a candidate for DBS surgery, and I would like a redo! I would demand a redo, but I know it would be futile.

At one point in the 4 hour process that will determine my fate, I was given one minute to come up with as many words as I could think of that start with the letter L. No problem. Those L words rolled off my tongue with ease. Then I was asked to name as many C words as possible- piece of “cake.”
Then she said name as many F words as possible and for about 10 of those precious 60 seconds the mother of all F words was stuck in my mind and would not get out of the way of all the other more innocent F words that wanted their turn. I stumbled and stammered to pull those pleasant F words out from behind the big one. But like a bully, it stood its ground in my mind and blocked my other F “friends.” I thought about just saying the big one to release the others behind it, but then I
would have to admit to the evaluator the fact that word existed in my mind. So for the remaining 50 seconds, I fought off the “word that shall not be named” and held up my honor, but I’m sure lowered my score.

So neuropsychologists everywhere, take note, please pick another letter besides F during your cognitive ability tests. If you use F, your data will be skewed because most of us do not want to admit that the F word exists in our minds or has ever been spoken out loud when only 60 seconds determines our fate. There are 25 other letters from which to choose, and I get F, gosh darn it!

First Punch Boxing for Kids

 

Check out the video below!  This summer pilot program for kids who may have any type of challenge is up and running. As I sit back and watch, it is like this program is meant to be. So many people are coming together to make it successful. It is a testament to when many people work together and bring their individual talents for the good of the group and for the good of others, amazing things can happen.

My Top 10 From First Punch, so far.

1.The smiles
2. The Laughter
3. The fierce look on a six year old’s face when hitting a punching bag
4. The intense focus of a shy 13 year old when hitting mitts in the boxing ring
5. The New Logo
6. Our T-Shirts
7. The Hugs
8. The sweat that makes me know the kids were challenged
9. The Support from the boxers’ parents
10. And most of all the cadence and chant when we all break it down at the end and together say 1,2,3…. First Punch

Why? First Punch for Kids with Challenges

The past seven years for me has been an incredible journey. I have been to a place that I never dreamed I would go. I have experienced a world right in front of me that struggles to fit in, keep up, and is often on the sidelines of life. My journey has been a spinal tumor, spinal cyst, and finally a Parkinson’s diagnosis through which I have discovered a whole new world of pain, struggle, fear, healing, acceptance, beauty, and joy. It is the world of the disabled or those with special needs.

From 2010 – 2015 I lived in that world as I watched and experienced my body succumb to the attacks of Parkinson’s. Slowly, my body began to stiffen and fail. I was losing my balance, my movement, my strength, and my smile. On July 28, 2015 I visited a doctor who prescribed for me a new medication. Miraculously, in one hour after being on that medication, I came back from my journey and the experience of being disabled. Although, I still have the same diagnosis, I am back to my almost fully functional self. There is no cure for Parkinson’s. I will most likely regress someday. I write this to you today because I sit here with the gift of my health back for an undetermined amount of time. Praise God.

For a while I have stepped out of the world of disability, but I cannot leave my friends behind. My friends are the little ones with challenges who I would see in the halls of the schools where I have worked for 24 years as a school counselor. I now have an amazing window into their world, our world in reality.

Our purpose for the First Punch Boxing for Kids with Challenges is to bridge that gap and bring strength and hope and to give kids the courage to step up and battle the challenges they face in their world.

I am a funny, fun, in love with life person. Parkinson’s tried to steal that from me. Parkinson’s lost. Hope won. The fear is gone. I want to share this hope with kids experiencing challenges in their lives.

I have so many people for whom I am thankful and so many more to whom I need to reach out and help.

Will you partner with us to fund this pilot program for the summer of 2017?

Let’s make it happen!

FIRST PUNCH – Noncontact Boxing for Kids with Challenges https://www.kickstarter.com/projects/147552517/first-punch-noncontact-boxing-for-kids-with-challe

Coming to the Surface

Sometimes reality makes me come to the surface and truly face what is happening in my brain. That is what happened yesterday at my appointment with my neurologist. From the moment he walked in the door, I knew he was analyzing my every move, word, and expression. He was looking for signs of regression, and that makes me have to face for a moment the physical changes that are slowly happening to me. At these times I feel like I can’t tread water or swim fast enough to get away from the raw reality of it.

I knew going into this appointment that I have noticed that my meds were not working as well. I guessed there was some regression, but yesterday I had to face it, grieve it, and feel it. It was a hard day.

This morning the sun is shining. I hear the birds singing, and I plan on living today to the fullest.

…… And I plan to submerge myself in the tranquility of denial, not denial that I have Parkinson’s.Today I will drown myself in the comfort that it does not define me. I will deny this disease any power over me. Today I will push back any fear that has resurfaced and focus on the beautiful routine of the day.

Today I will drift and let the current pull me far away from any negativity and closer to my creator. Today I will trust my God. Today I will quit fighting the undertow of faith and belief in a bigger plan than I can see. There is a bigger and plan than pain and suffering.

That is until July 25, my next neurologist appointment. Then I will have to resurface again, but only for a day!

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And We Smile On

I was with a friend yesterday. I picked her up and we went together to buy a gift for wedding that we are both attending. We stood at the registry of a local store for about 15 minutes deciding what to buy. Then it took about 20 minutes for the cashier to figure out how to split our bill, order, and ship the item in between waiting on other customers. It is amazing how you can connect with someone through a song.

I only know his name because of his name tag. David started singing to the radio playing in the background Versace on the Floor by Bruno Mars while he waited on us. I have a funny story about that song. You can read it in an earlier blog post of mine called “Sachie on the Floor!” I told him that story, and we shared a laugh. He then proceeded to tell me that he is a writer, too. One thing led to another, and then My friend was telling him about First Punch, the song by Heather Richardson that I cowrote. I thought he would be bored with it, but I played a little of it.  It is far from being Versace on the Floor. But when this young, African American kid got tears in his eyes and said he needed to hear that because of the hard time he is going through right now in his life, I thought, “yes, this is why we wrote it.”

This kid and I have nothing in common, but I got a glimpse of his pain and his struggle through a few seconds of a shared song. I may never see David again, but I will never forget this honest moment when the wall of “put on a smile” came down for just a moment to remind me– we all are struggling with something behind our smiles.

Be kind always because there is pain behind our smiles — and we smile on.

First Punch – Single by Heather Richardson https://itun.es/us/8suEib

Take the Plunge!

Why do they do it? The crazy ones. The crazy ones who wanted their moment of fame and took the plunge over the Niagara Falls. The first one to go over the falls in a barrel was Annie Taylor in 1901. She intrigues me because like me she was an educator. She was close to my age when she did it. Actually, she was just 7 years older than I am. It is documented that she did it for financial reasons, but there had to be something more that motivated her. Maybe not, people will do insane things motivated by money. In the end, she died destitute.
What did she have inside her that made her want to attempt something that had never been done before and risk her life?

That is what I think about now as I drive home from my trip to Niagara Falls on the Canadian side this weekend. As I watched that powerful force of water drive over the edge, I tried to climb into Annie Taylor’s mind and imagine her as the barrel closed over her with no turning back. Was she confident that she would survive or did she have doubts? When she climbed out of that barrel at the end of the ride was she expecting her life to be completely different? What about as she was preparing for her journey over the falls? I can just imagine the talk of the town about the “crazy one.”

Then I started to compare my life to hers. Now I’m in no way saying that I want to risk my life doing something like going over those Horse Shoe Falls. I’m a scaredy squirrel when it comes to heights and roller coasters, so that’s not my thing.
But am I living my dream or just “swimming upstream?”

That is the comparison I think about. Since I was diagnosed with Parkinson’s Disease, I have this desire to be more of a risk taker. Life is no longer routine for me. I do crazy things like write songs, write this blog, enter song and writing contests. I am in the process of cowriting a children’s book. I am more out-going and love to meet new people. I do all of this not because I want to get rich or famous. However, I hope not to end up destitute like Annie Taylor. What motivates me? I think I’m a little bit like Annie Taylor inside. I do not think of the outcome of success or failure. I do not think about those around me who think I’m a little off my rocker. I do not listen to those who question me and say I will never have a hit song or wonder why I invest in this book I believe in.

I wonder if Annie Taylor enjoyed the journey of going over the falls? Yikes! I bet it was both exciting and terrifying at the same time.

That is how I want to live the rest of my life. Living the dreams that God whispers to me, “This is going to be both exciting and terrifying. People are going to think you are crazy. Do it anyway!”

That may be the difference between Annie Taylor and me. I pray that the risks I take and the dreams I follow honor God help me to see his miracles in my life.

Funny, Annie did walk away from that plunge over the falls in a mere wooden barrel! Miracle?

So I ask you. Are you living your dream or just swimming up stream? Do you have a dream for which you need to “take the plunge?” Do it! Life is short. Just don’t tell me that your dream is to go over the Niagara Falls– or life could be a little shorter. Live your dream!

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Dear World,

Dear World,

I am warning you things are changing. The way we look at the word disability is fighting to change. At this time I know a 17 year old girl with Down’s who hosts her own cooking show. Another girl with this characteristic is applying at some of the most prestigious colleges in our country. In this video, my little Bella doesn’t see her Cerebral Palsy. She sees her self as a strong fighter, as she should.

World, you have to change. Some of us may do things differently than the typical person, but we are fighting. We matter, everyone of us.

And if you find yourself with the opportunity to assist us in some way, be thankful. You will most likely learn a great deal from our strength and from our challenges.

If you find yourself spending time with us, you will know a deeper meaning of life. You will have more compassion. You will wrestle with your own perception of what is important in life– and the lines drawn in the sand of what is a disability may just get blurred and forgotten. You might see us not as a person with Down’s, CP, Autism, Parkinson’s, ALS, etc. You might see us as the girl with curly hair. The boy who is funny. The mom who writes. You may find that it is fun to spend time with us.

World, We are fighters. Like Bella in this video, we will not rest until you see and know us for who we are. And when you finally open your eyes, you will see how boring the world would be without us.

World, We are not broken. You are. We were fearfully and wonderfully made, just like everyone one that inhabits you. World, don’t ignore us. Being ignored is the worst pain.

From One who who sometimes acts like she is from another planet,
Lisa