Category Archives: Parkinson’s Disease

Hiding

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We try to hide from the world when we feel inadequate, abnormal and different. It’s a natural defense but can be destructive. Hiding ourselves away from the world can be natural in order to defend ourselves from others and their inquisitive, lack of understanding minds.

I was talking to my neighbor one day and my hand began to shake quite a bit and she asked, “What’s the matter with you? Am I making you that nervous?”

She found out I had Parkinson’s that day and she doesn’t know quite how to deal with ‘it’.

Illnesses are funny things. We want to hide because of how they can make us feel. Others want to hide from us because of how our abnormalities can make them feel. It can be uncomfortable for both parties. People don’t know how to approach someone with a handicap or an illness – they don’t know what to say and they don’t know how to respond.

May I suggest, next time you find yourself in a situation like that described above, be the first to break the ice. Be the first to take off the mask you may be hiding behind – that of fear and rejection or feeling abnormal. Others will be more comfortable when they see you are.

I’ll Have It His Way

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I went to see a movie the other night with my daughter. Now, don’t laugh…

High School Musical 3 – Senior Year.

I haven’t watched the first two movies, but have heard from various sources that they were commendable. So, as I’m a sucker for musicals and while my husband and son went to the shoot ‘em up production in the theater adjacent to us, we went in to see ours.

We were the only people in there and had a great time. The only problem with these types of movies though… The repressed desire to sing and to dance is reawakened (much to my family’s despair). I left the theater singing The Boys are Back. I added a few little moves to the words that I could remember (which were few) and a couple dance moves. Yes, the attendant behind the snack bar laughed. And then in one of my graceful moves, I threw out my back. The pain seared through the entire middle. Fortunately, it didn’t last too long.

What was unfortunate, however, was facing my PD once again. Knowing that no matter what my heart desires, this PD – this thief – will determine whether I can do it or not. It won’t be my decision to make.

But…

If I had my way, I’d join a dance class and learn to waltz.

If I had my way, I’d go skiing one more time.

If I had my way, I’d play softball and hit a homerun and run all the bases myself.

If I had my way, I’d put my own socks and shoes on.

If I had my way, I’d insist that I can do it myself.

If I had my way, I’d do many things.

Things that I used to be able to do when I had my way.

But today is different. I can’t have my way. PD has seen to that.

I’ve had to learn to receive and not always be able to give.

I’ve had to learn dancing will have to wait, at least for now.

I’ve had to learn skiing is not for me.

I’ve had to learn others are willing to do what I cannot do.

I’ve learned, unlike Frank Sinatra, that I don’t always have to have or do it my way.

And that’s okay, because I know that for some reason, this path I am on is His way and that’s the only direction I want to go. I also know that when I reach the destiny He has set before me, He will be waiting on the dance floor of heaven, just for me.

Burden or Blessing

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I am journaling our adventure of a new season in life. Currently, my husband and I are gutting a mobile home (you can read all about it at: www.plantinggardens.blogspot.com) and this comes from a previous entry that I re-read today. I thought it somehow seemed relevant for the PJ site. I hope you enjoy it. -sherri
Burden or Blessing…


Back again…
Ken asked today if I was giving serious thought to those Pre-Mobile Home Renovation Pre-Nups. I sneered at him. This was after he hit me on the head with a flying wooden sword that he had just ripped from the wall. And that was after disassembling the bathtub that I’m certain had not been cleaned for well over 38 years. And that was after I fell asleep in the car while I waited for him in the Wal-Mart parking lot, only to be left to dream about washing paneled walls and then to suddenly be woken from a nightmare, thinking that Ken, getting back into the car was the wall falling on top of me that I had been washing in me dreams (at least I think it was in my dreams…).

It’s not that bad, but I don’t think I’ve ever sweated that much, not even running cross-country in high school (ah yes, those were the days…). Just what you wanted to hear!!!

We are busy with the guest room – pulled up carpets, knocked down the closet walls.

The Structure, in its entirety got a new facelift outside when it was power washed for two hours today. That’s how long it took to give it a bath.

We ordered windows today – double paned, white vinyl, 95% UV protection with a 87% energy savings from temperatures in and out (I sound like a guy describing his hot rod). I’m excited (did I say that?!). NEW WINDOWS! You have to see the old to appreciate the new.

Yesterday, while Ken was talking with different guys about different things about doing different work on different projects, I was out pruning roses. Oh – before I forget – I smelled one! It was the most wonderful thing!!! Some of you know that part of PD is losing your sense of smell. Mine’s usually absent but yesterday it was like a ‘What was that?!?’ moment. Then I realized – it was the rose in front of me and it smelled as wonderful as it was beautiful! I haven’t smelled a rose for so long and it was a gift!

Anyhow, as I was basking in the fragrance, LaurieKay, the neighbor I told you about, came out with her granddaughter Isabella. Isabella is 3 months and gave me the biggest smile that warmed my heart. Then she spit up. A lot. (However, that wasn’t what I was going to tell you.)

The side of LaurieKay’s face was all bruised. She had three teeth pulled last Wednesday. No anesthesia, mind you. She was going to have five pulled but couldn’t stand the pain any longer. She has no insurance (many of us can relate, huh?). While she shared that they also found a tumor which they told her they are pretty sure is cancerous, my hand started shaking really bad and she kept looking down at it. Though it was offending me, instead of cutting it off, I stuck it in my pocket and explained why it was acting obnoxious. She looked at me, stunned, in silence for a few seconds and then this is what she said…

“Aren’t we blessed.”

Then I looked at her in silence for a few seconds. Then she went on to explain that she had Crones Disease and diabetes.

“We all have something, don’t we?” she added.

It was her ‘aren’t we blessed’ that stuck with me all day.

You know what? We are. When God has allowed certain circumstances and issues to become a part of our lives – a disease, an illness, a wayward child, a broken relationship, the loss of a loved one – we are blessed. We have been chosen to bear something that for some reason He has decided it is best for us to bear.

Maybe it’s to take us deeper into Him. To rely and depend on Him alone so that He truly becomes our all – in all.

Maybe it’s to make us more compassionate. To be given a sentence of a terminal illness, a chronic disease – often causes the bearer to look at others in a more compassionate way, as their understanding of pain and suffering has increased.

Maybe it’s to make us laugh. They say a great sense of humor is often born through a great deal of pain. Some of the funniest people I know are the ones that have been through the toughest times. They have found that God is their joy and laughter truly is the best medicine.

I believe what LaurieKay said is true. It is a blessing to suffer, although I’ll be the first to admit that I do not always act as if I am being blessed. But when I’m in my right mind (no comments), focused on His grace and goodness and when I’m trusting in His provision through my day, I am blessed. Blessed to have been chosen to bear what others weren’t chosen to bear, chosen to be able to understand more deeply what some never will. I am blessed to have been taken deeper into Him through pain and sorrow through the circumstances in my life and blessed with the gift of being able to laugh at the simplest things. I am not bragging and don’t mean to sound as if I am. Would I choose this blessing? I highly doubt I would have stood in that line of freebies! But looking back at what I’ve learned – the things God has allowed me to experience because of PD and the wonderful people I’ve met and have the privilege of witnessing to and encouraging – then yes. I would have stretched out my hand to God, in trust, and said Thank you for trusting me.

I hope that you find the next tough lesson, trial, or circumstance in your life to truly be a blessing, chosen just for you. And when you think of it, please pray LaurieKay’s results are negative. She’s ready to meet her Lord, but she really likes being able to watch that little granddaughter of hers every day.

These Are Real Advertisements On the Web!

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REAL ADS FOUND ON THE INTERNET…

I was researching ‘brain mass’ on the internet and came upon some rather interesting ads (these are for real). I have a friend who needs a kidney. Maybe there’s hope!

Enjoy – Sherri

Brain Tumors at savecrazy.com

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Brain Tumors at BizRate.com

Bargain Prices. Smart Deals

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I Wish

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I wish I could form words without someone thinking I was drunk

like saying, “Yes I do think” instead of “Yes I did thunk”.

I wish I could carry a glass with cold ice without shaking

and rattling so loud it sounded like a martini I was making.

I wish I could speak loudly so others didn’t say “Quit muttering”

I wish I could snap back and say, “Well then you quit your stuttering!”

I wish I could walk without dragging my feet

and stay in step with others instead of always feeling beat.

I wish I could not take pills to make me stand straight

oh my gosh – now that would be GREAT!

I wish I could walk without dragging my feet

and almost trip when others I meet

I wish I could hold things without fear of them dropping

but am thankful I still can walk without always stopping

I wish the pain in my neck and back would disappear

But the stiffness just gets worse is what I hear

I wish brain surgery wasn’t in the future for me

but what is – is and what must be will be

I wish things were different for me

I wish the same for others with this thing called PD

but they’re not and that’s okay

for I’ve learned to be content anyway

I’ve got friends who live near and far

friends who know just who they are

some who understand and some that just care

walking with them I have learned to bear

oh how I thank God for all of it, you see

For without PD these things would not be

the friends, their concern, the many lessons learned

even when my heart’s been heavy, my hope has turned

to the One who’s never left me to walk unsteady

the One who stands faithful, true, protective and ready

oh my Jesus, how can I say how great You are

without tears falling from my face, captured in your jar

tears of fear, tears of pain

tears of weakness turning to strength in You I gain

how can I live one moment of my life

whether filled with smiles or filled with strife

I have seen purposes and plans

that could only have come through Your hands.

so I just want to say thank You

honor, praise and glory to You alone are due

I want to shout Great are You Lord Almighty

for loving, protecting, and carrying me.

**A Book of Poems and A Bright Light

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I had an epiphany the other night as I chatted with a fellow PD’er online.

Paul Martin… You have to read this guy’s poems. He will be our featured MVP in the next couple of months but for now, I’ll share a little of what I know about him.

He has Parkinson’s Disease.

He is very transparent.

He adores his kids.

He refuses to give up.

To combat what was going on inside his head (in more ways than one), he wrote poems. While we chatted, for some reason a humongous thought came to me.

Ever since I can remember, I have loved to write. I wrote all the papers for my classroom that I taught when I was eight years old. I wrote poems and short stories in my free time as a teenager. I took creative writing classes in college. I kept diaries for my kids as they grew up (or tried to) and kept several journals of my life throughout the years. I started seriously writing again when my kids weren’t putting their fingers in the light sockets anymore, in between baseball and softball games, basketball and volleyball games, football and more.

It was sporadic at times and irregular. I put it on the back burner more often than not, due to other things that always appeared more important.

Then as I was ‘listening’ to Paul as he spoke through his poems, I thought to myself, “If for no other reason, God allowed this guy to have PD to touch the hearts and lives of others with his words in a heart-wrenching way. You cannot, whether a PD’er or not, walk away unmoved.

As I read, I felt as if God was trying to get through to me. And then I got it when I was chatting with him. I’m not even sure what specifically turned on the light, but it was bright.

Without having been the recipient of this disease, I might be finding things to do (and I do still) that keep me from writing. Having PD has brought me back to what I have loved doing all my life. Without it, I might still be cutting out little useless pumpkins from scraps of pine. Not that they weren’t cute, useless pumpkins.

Sometimes (okay, often) God has to knock me upside of the head to get my attention. Sometimes He has to hit me hard. Like hitting me with YOPD. Yep, that was a hard hit. However, it was a good hit because now I am not only extremely focused (as much as someone with PD can be), but I have a tremendous purpose and that is, to encourage others through this journey God has allowed.

It is not a curse. It is a blessing and truly, I have been blessed in the journey.

**A Friend’s Trip

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The following is a post that was first published on ‘Parkinson’s Journey’, my PD site. It was initiated by my co-author partner of PJ and good friend, Judy Hensley, about her trip that she recently made out west to see four PD friends that had never met in person before this. This is what they had to say about each other after meeting…
About My Friend Karen (by Marian)
I used to think that courage meant not being afraid. I used to think that strength meant not crying when your heart was breaking. Then I met Karen. She showed me that courage means going on even though you’re afraid, and strength means reaching out to others even though you’re crying. Karen has looked into the eyes of despair and rejected it. She has laughed through her tears and defied the odds. She has reached out with a strong hand to help others while her world was turning upside down. She is a wise woman and a joyful (and sometimes frightened) little girl all at the same time, and I’m so proud and happy to say that she is also my friend.
Love ya,
Marian

About my friend Sherri (by Judy)
I learned alot about my friend Sherri when she came to visit me in Tennessee in January, so this is a cumulative summary of some of her characteristics. Sherri is of course a writer, so she soaks up things about people without much outward interaction at first. And then I think she evaluates a person or situation with her heart and mind and interacts in a most sensitive manner. She may seem shy upon first meeting her, but then when she speaks what she says is very thoughtful and sincere. She is tentative about sharing much about herself at first, and she puts on the front of handling life with PD quite well, but I’m pretty sure that is because she puts all the hard life stuff in God’s hands. Her faith is a strength much greater than her own because she has experienced God’s strength in her life before and knows she can depend on it above all others.

While at her home. I got to see her with the ones who make her most proud – her family – but I love the look on her face when she talks about and plays with her ‘bright spot’…her one year old granddaughter. It is a very special bond they share! And I got to share for an afternoon planting and digging in the dirt with her–another one of her passions. And I learned, here is one way we are different….I like admiring the end result of it all…the lovely garden, and will gladly leave the diggin’, sweating, and wondering if what I just planted will grow process to others like her! lol

Sherri may look like she is too serious (PD masked facial look) but she can get zany and silly just as fast as the rest of us!! And her KGB jokes are a riot! To me though, the most impressive characteristic and the trait I most admire in her is her compassionate heart. You immediately sense it, you know it by her words and actions, and in her writings as well. She is selfless, funny, and a wonderful person to know and call my friend.. Thanks Sherri for making my adventure so very special. 4 ever admiring your heart….judy

About my friend Judy (by Karen)
It was nearly two years ago Judy and I met online through a support forum known as Patients Like Me (PLM). She reached out to me through an instant message system they had at PLM. From there a friendship began to blossom. It would not take long before I would really learn exactly what Judy was all about…OK well maybe not exactly she just too unique of an individual for that! Judy has a heart of gold and a spirit of passion for God that stretches beyond the heavens. She has a sense of humor that is infectious especially when she starts to laugh and she also knows how to be not only a compassionate friend, but also giving.

I will never forget the time I came home from work in the afternoon; I was feeling not only emotionally beat up by Parkinson’s but also physically. I had been home on disability and had gone back to work, which was grueling every morning for me. One particular day stands out in my memory; I was too ill to continue my day at work and had to leave after only being at work a few hours. I called Judy on my cell phone en-route home in tears. I felt not only disappointed and betrayed by my body, but embarrassed to admit to my employer that I was having a hard time working a full day. After I had been home for a while my telephone rang; it was Judy on the other end giggling and telling me that when my front door bell rang to open it and sign the paper and please add a tip…I said “What???” she continued to giggle to the point she was in tears on the other end and gasping to catch her breath and then blurted out to me “what kind of pizza do you like??” Yep you guessed it the bighearted Tennessee wild woman ordered me lunch…all the way from Tennessee…I have never had anyone do that for me! Not only was I surprised but so was her credit card company when they called her concerned someone in CA had gotten a hold of her credit card and was using it!! Looking back upon the memory of that very day showed me the heart this gal has for her friends.

Last week Judy made a trip out to the west coast and Marian (another CA gal) and I were on the list of visits…we had a grand time with Judy, Sherri, Marian and myself…No one but Judy could preplan the fun she had in store for us…she went out to the car and returned with a bag filled with small cups of different colors of Play dough…giggled and said “OK everyone pick 3!” We laughed, we sculpted, it was great fun to see four women ranging in age from their 40’s and 50’s so young at heart, each intensely immersed in creating masterpieces! Judy you truly are a wonderful, energetic, vivacious woman…thank you for your friendship!

About my friend Jeanette (by Judy)
I really think I threw my friend in Washington state, Jeanette, a curve ball she never expected when I asked her if I could come and visit her! That’s just the way she is …unassuming the power of her friendship and the blessing of her attitude. If there was a bubbling- over joyous-friend award, she would get it! I so wish she could have come along on the rest of my adventure with me….she would have fit right in…lil bit serious…whole lot of fun and giggles. The other thing so special about Jeanette is how much she just loves people and children and animals. She finds something good in everyone and everything to be grateful to God about. I had the joy of attending her church with her on Sunday morning and it was just a great time of fellowship. Later that day we went on a ferry boat ride and talked Jeanette into coming to Tennessee to visit sometime in the near future. I’m holding her to that promise, no matter what! The thing I absolutely love about Jeanette is her laugh! It is so fun filled and she uses it alot. And she also has the best dead pan humor that is always got me grinning. So Jeanette is my joyful friend. Don’t misunderstand, she has her days too when life gets hard, but it doesn’t take her long to look and find a blessing to claim or something to laugh about in it all, and that’s an amazing thing, I think! Lov ya kiddo…looking forward to you coming to see me in TN!
Judy

About My Friend, Marian (by Sherri)
She walked around the corner as we exited the hotel and I could tell it was Marian by her smile, which matched the one on her Daily Strength and Facebook profiles. We had never officially met, only through the exchange of emails and updates through the PD community.

Marian is quiet and shy but once we all met and exchanged greetings, it was as if we all knew each other forever. Marian makes you feel important and rarely talks about herself but instead asks about you. She has an extremely strong vocabulary, evidenced by her competitive spirit in a game of Cranium. So much so that we blew Judy and her team clear out of the water in that round. An avid reader of such novels such as Moby Dick, she focuses on the importance of its message and not necessarily the size of the fish or what the author chose to name such a massive fish.

If I could use one word to describe Marian, it would be ‘charming’. I’m not sure why, except that is what came to mind. She is funny, witty, innocent in her own way – perhaps it’s because she made an extraordinary ukulele snake charmer couple, complete with baby snakes, out of an ordinary lump of Play-Doh.

Whatever the reason, Marian is a warm and wonderful person who went from being an acquaintance over the internet into a warm and wonderful and wacky person I am honored to call ‘friend’. God is good.
Sherri

About 4 wild women I read about on Facebook by Jeanette (as described by phone to Judy) note: Jeanette knows all four of us online but had only met Judy in person (isn’t she lucky?). For her assignment she was to pick some words or phrases to describe Judy, Sherri, Karen, and Marian from the pics on Facebook of Judy’s trip:
Jeanette on Judy…”drop-dead gorgeous” (further evidence of her insane humor and need for new glasses!), courageous, uniter, joyful (gee, thanks J!–your check is in the mail, lol

Jeanette on Sherri–struggling (to stay awake??? she did drive awhile), deep, enduring, and a great friend (and Judy agrees!)

Jeanette on Karen–love her smile, infectous attitude, intense (note from J: as in Dr. Fernandez –but if she had witnessed the Cranium game she might change this description…lol–you had to be there…no way to describe !)

Jeanette on Marian–looks like she gets along well (with PD and others) and Sparkles as well as great PlayDoh modeler.

**Two Geese In A Windstorm

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The other day, as the wind literally howled and blew things from here to there, two Canadian geese went flying by with much effort, flying against the wind, squawking loudly as they went.

I looked up and watched them go by, feeling the wind against my face and smile as they flew with determination against the hidden force that tried to blow them out of the sky.

Life is like the weather. One minute the sun can be shining, renewing our spirits and the next a thunderstorm threatens to pour down upon us. PD can be like that windstorm, trying to knock us down and pull us from our determination to keep going on.

This week has been a little harder for me. I’ve noticed my meds aren’t working quite as well as I would like. My foot’s dragging a bit more. My hand doesn’t want to do what I tell it to. My balance is off. My words are more jumbled than usual. There’s more pain.

I’m in a windstorm, pushing against the wind of this life while fighting to keep flapping my wings as I press on.

As I watched those two crazy birds pass by above, carrying on about something as they were pushed here and there by the force of the strong gales, I realized with each flap of their wings, they were getting stronger. Fighting against something they couldn’t see, they knew without a doubt it was there as it pressed against them and tried knocking down. Nevertheless, they fought to keep going. As they fought to stay up, they became stronger with each time their wings flapped up and down.

I want to be like those geese. I want to stay up when this disease tries to knock me down. I want to fight hard and become stronger because of it. I want to squawk loudly so that others will know I refuse to give up.

Next time you hear the geese overhead, look up. I might be leading the pack. In spirit anyhow.

His,

Sherri