Sometimes…

I am no Wonder Woman, but sometimes a girl needs to feel like Wonder Woman to face the challenge in front of her. For me, that challenge is DBS surgery tomorrow.

What is the secret behind Wonder Woman’s power and fearlessness. It is FAITH, FRIENDS, and FAMILY.

I will wake up tomorrow morning at 6:00 am and the show will begin knowing that I have so many dear people praying for me. That prayer power is the source of my strength.

Am I scared? I feel like I am standing at the end of a high diving board counting to 10 just knowing I have to stop overthinking it and just do it.

Faith, friends, and family are lifting me up, but

Sometimes….. a girl also needs the gold go go boots on clearance at Kohls to complete her powers.

Sometimes…..

Here we go. It is almost showtime!

img_7447

Advertisements

Alan

His name is Alan Roy Scott. He has irritated me. He has made me cry. He has made me laugh. He has encouraged me. He has challenged me. Except through Skype, I have never been in his presence, but he is my friend. You may not know his name, but if you have listened to songs sung by Celine Dion, Luther Vandross, Cyndi Lauper, Gloria Estefan, Roberta Flack, The Allman Brothers, Sheena Easton, The Neville Brothers, Pat Benatar, Patti LaBelle, The Pointer Sisters, Rick Springfield and Johnny Mathis, then you have been touched by his creativity. If you have seen the First Wives Club, Top Gun, Coming To America, Karate Kid II, Fame (TV show), Rags To Riches, Santa Barbara, As The World Turns and Beverly Hills 90210 then you have heard his music as you watched. Alan Roy Scott is an acclaimed songwriter.

I started this crazy lyric writing about a year into my Parkinson’s diagnosis. I discovered I have what I call a rhyming disorder. (Don’t look it up. I made up the term.) It just means I like to rhyme. Why did I start doing this? That is another story for later. What I like about the challenge of writing songs is that for me it is like a timed sudoku puzzle with words. You have about 3.5 minutes to tell a complete story with part of the story repeating 3 times, and it has to rhyme, make sense, and be catchy enough to move the audience emotionally in some way. Whew! Alan Roy Scott has drilled me on this over the past few months through an online song evaluation service called Song U. When I get an A+ from Alan on a song critique, it is not like getting a participation trophy. He is a straight shooter and he means what he says. I work for those A pluses from Alan. Lol. Alan and I wrote a song together for an organization I belong to called Rock Steady Boxing. I did pay to write with him. Well, he is Alan Roy Scott, and I’m no Celine Dion. It was worth every penny to work and learn from this tell-it-like-it-is, compassionate man.

Parkinson’s, I hate you, but you have brought such music to my life in so many ways. You have brought people into my life who I would never have met without you. Parkinson’s, I want you to go away, but you have taught me to listen deep inside. There is beautiful music playing in my life all around me that I would not have noticed without you. Parkinson’s, I have a hard time saying this because I hate you, but thank you. Alan Roy Scott, let’s write another one in 2017!

img_7253

Don’t Forget

Don’t Forget.

DBS (deep brain stimulation) surgery is a real possibility for me in the near future. My miracle medication, Levodopa, is starting to lose its effect reminding me what I try to forget — Parkinson’s is a regressive disorder. At my most recent neurologist appointment, I had a levodopa challenge test. I had to be off my miracle medication for twelve hours to gather data on how effective this medication is for me. This information is needed for the brain surgery. For twelve hours I had to be reminded of what I try to forget — this disease is not going away and it was frightening to live in that body for twelve hours unmediated.

During the same twelve unmediated hours, I received heartbreaking news that a dear friend’s husband has Alzheimer’s.

As much as I try to forget– there is no cure for many neurological diseases that ravage and destroy. Yesterday forced me to think about what I try to forget– the late stage of these diseases.

I try to forget — some day that will be me. Even though this is a bit sad, I am going to tell you what I don’t want you to forget — when I am in that late stage. Then, you fill in the blank for your loved one.

Don’t forget — this is not the real me. I am not this body but trapped inside it. Don’t forget.

Don’t forget — my smile and how I am not very photogenic. We laughed about this often.

Don’t forget — that I am funny. Tell the stories of all those funny moments we shared.

Don’t forget — that I love dogs. It lifts my heart to have a fur ball snuggled next to me.

Don’t forget — that I am passionate about children’s causes and bettering their lives.

Don’t forget — that I am a fighter. I am still fighting.

Don’t forget — that I’m your friend. I would give you a hug if possible.

Don’t forget — I am your sister. You still need to ask to borrow my clothes.

Don’t forget — I am your mom. I love you dearly for who you are, not what you do. I brought you into this world and I may not be able to take you out now, as the saying goes, but you know my expectations– men of character.

Don’t forget — I am your wife and even though you now are my caretaker, I am passionate for you, adore you, still love your legs. Keep biking. You have great legs.

Don’t forget — the real me. I’m just trapped inside this mortal body.

Don’t forget — to be happy. I believe in Jesus. You don’t have to worry about me. I look forward to heaven where I will be greeted with a new whole body.

Don’t forget– I love you.

For your loved one, what would they say.
Don’t forget — ________.

While I am still in the earlier stages and don’t expect this to be me for a long time, and I am still praying for a cure. I want to remind you some day — don’t forget.

img_7034

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!

Red Shoes

(This is a continuation of the post from 6/3/17 titled Meet Lorisa.)

They are Lorisa’s favorite– her red high top tennis shoes. You see them somewhere on almost every page of the book. When they are on her feet — always untied.
There is a the back story about red shoes. Lori’s oldest boy played little league baseball like many boys do when they are seven and eight years old, but you will not hear of his name in the MLB because it was soon discovered that his gift was numbers and baseball stats. He is a successful financial consultant today. Oh, but he did have a pair of coveted red baseball shoes that he passed down to my oldest boy two years younger. My oldest wore the flashy red shoes for one year of little league. He soon realized that baseball was not for him the day the coach had to yell out to him in the outfield “take the glove off your head!” Today he volunteers his attention and time to young kids through the Big Brother program who are also at times are being told “to take the glove off your head.”

Next, the red shoes were handed down to my middle child. They were actually a size too big and flopped on his feet the first year he wore them. However, the minute he put them on and a teammate said “cool,” it was like those shoes were magic. He wore them for the next two years until the rubber cleats were completely worn down. You will not find his name in the MLB either. He traded his passion for baseball for a career as a sales analyst. Lori and I share cherished stories of a little boy who looked up to his older brother and older family friend so much and insisted on wearing red shoes a size too big for him. He was even nicknamed “Red Shoes” for a few years.

So as you read the pages of NOT YET and see a cute little girl proudly wearing her high top tennis shoes, you now know the precious memories that Lori and I share of “red shoes.”

Why are Lorisa’s shoes always untied …… because “she’s not quite there yet. She’ll get there. You bet!”

NOT YET….. coming soon!

By:  Lisa Cox & Lori Hockema

 

img_6406

Ribbon of Tears

Ribbon of Tears

If each of our lives is a story, and I do believe each and every one of us has a story to tell, today’s page of my story would have tears staining the ink on the page. Today is a day I let go and trust. Today, I say good-bye to the idea of going back to the profession I love. Today, I turn in my letter of retirement much earlier than I ever anticipated. Today Parkinson’s knocks a little wind out of me.

By tomorrow, I will turn the page and look for new opportunities. Tomorrow, I will quit pouting and see all of the windows God is already opening as this door quietly closes in my life.

Actually, I won’t wait to turn the page of tomorrow. I will mentally put those boxing gloves on (physically put them on tomorrow) and hit back

I will do as the song Heather Richardson and I wrote…..

“dig deep, find strength, and trust. And throw that First Punch”

But……. first I will reflect on a line that Heather and I wrote in another song that I hope you all will be hearing her beautifully sing sometime soon…….

” Today is marked by a ribbon of tears to close the chapter of” my counseling years.

Good-bye —
ZCS

Hello —
New Chapter

img_4322

Mom Wut?

Some things of your youth should not ever be resurrected. That’s what we discovered when I purchased a used French horn about a year ago.

One of the many non-motor ways Parkinson’s affects me is my voice volume. Common words from my husband are “what, I can’t hear you, you have to talk louder.” Remembering my glory days of fighting to remain in first chair position as a fine-tuned French horn player in high school, I thought bringing the beautiful sound of this instrument that adds depth to so many songs as an accompany instrument was the answer. I read that playing an instrument could strengthen muscles and help with voice volume, and it’s true. I forgot that there were a lot of um, pa, pa’s played by the French horn in most songs as the flutes had the main melodies. Oh, but there was Tchaikovsky. I envisioned playing Tchaikovsky’s 1812 Overture with the same precision as when I did in high school. In this piece, the French horn finally gets its glorious moment taking center stage of that grand song commemorating Russia’s victory over France.

Mr. Eric Wainscott, beloved band director of my youth, I hope you get to see this video. From the moment in the 5th grade when you helped me select this instrument that would be part of my life, it has strengthened me. Mainly, from all of those years lugging it back and forth each day from school, as I enviously watched my flute playing friends tuck their instruments under their arms and skip home. But I also learned from this instrument that most of life is spent as accompaniment — in the background. The world doesn’t revolve around me as usually it didn’t in songs for the French horn — except for in the Overture of 1812.
Just like Russia battled France as portrayed in Tchaikovsky’s song, I will battle Parkinson’s. — it just may not be with playing the French horn.

My greatest victory is my three boys plus husband who lovingly endured my attempts at bringing back to life a time of my past history.

I love this video made by two of my three boys. The laughter it brings me, may not do much for my voice volume, but it strengthens my soul.

So good-bye French horn. Thank you for the life lessons and memories.