I’m here to tell you about a team
of girls who play volleyball in east Tennessee
They are playing in the state tournament this week
their goal is simple :  play with heart and refuse to be beat.

They have a game plan emphasizing bump, set, spike.
Do you think any of that would apply to life?
“nah,” you might say but I would like to propose:
we need the strength and discipline of a game plan in life or volleyball…to overcome our foes.

Let’s start with receiving the opponent’s serve
Life can throw things at you that will test your nerve
Face it square on and claim your ‘game on’ strength
With God on your side– that’s the best defense.

Realize you are not out there all alone
Use the team around you to gird up your bone
You must work together and know this one thing is true
God has promised he will never leave or forsake you.

Your next move might be to pass the ball to a teammate
By doing that you show your trust even if they should make a mistake,
God has put friends and people of support in your life
and if all of that fails His Holy Spirit will ease the strife.

Some games are easy, others are hard and we may lose
But if we keep our faith, then through it all, God will honor what we do
And then the game and our life will come to an end
We may look back and ponder how it all began.

A journey, a game, a lifetime, a match,
Some games had great bump, sets and spikes and others we’d like to scratch,
it’s not just how we play a game or live our lives today ,
but how we do it all through life that determines our eternal way.

A final reward is to meet the Coach upon whom we’ve depended
On His courts of praises that will never be ended.
There He will proclaim whether we have done well
or never trusted Him to help, and in our own self we did dwell.

So when you play that game of volleyball – the next time,
Or face something in life that could turn out bad or be just fine,
Give it your all and don’t give up hope
GOD is with you always and will help you cope!

Judy Hensley
10/28/09

If you happened to have spent much time in church, you may be familiar with the song called “Love Lifted Me” . ….the lyrics start out saying: “I was sinking deep in sin, far from the peaceful shore, very deeply stained within, seeking to rise no more…but the Master of the Sea heard my despairing cry, and from the water lifted me… now safe am I! Love lifted me, love lifted me….when nothing else could help….Love …Lifted……Me!”

Just a few mornings ago I was contemplating some of the recent circumstances in my life, and thought about how life is like riding in a raft on a river and then the song above popped in my brain as well. We carry on most days riding easily on the ebb and flow of the water as we try to stay adrift in this journey called life or our destination may be just to reach a peaceful shore. Some days life is like floating in a raft that is right in the middle of a raging, mighty river. On other days we can drift along easily and be able to manipulate the raft to the shore, or we may encounter raging rapids that threatened to overwhelm our raft and threaten the completion of our journey. We know not what is beyond each turn in the river.

If you are a wise raft guide, you will have learned from navigating previous rapids and by watching others as they go before and experience the swift and changing water. You might even become confident and brag to others passing by how well you did going down some heavy and swift waters. You might be stronger from previous runs in the river where the going was rough but you made it through. You might even believe you can make it through anything alone.

But then you find yourself heading into the same turbulence you saw others in and thought to yourself “I ‘ll be able to handle that rough water without help from anyone else!” Isn’t it amazing how different it looks like from the shore than when you are surrounded by whitecaps???? You learn what life has in store for you might be overwhelming and that your raft is not as big and stable as you’d hoped it would be.

You learn how strong you need to be and just how weak you can be at times on the river of life. Paddling becomes more efficient with prayer and guidance from the One who made the river and who knows what is in store for us around each bend. He offers safety, security, and love on the appointed shore for us. He may place someone on the shore or even in our raft to encourage us to not give up; to paddler harder; and when your own strength is gone, He will lovingly provide His own to you.

He can do these things because He made the river, He intends for you to grow stronger from your journey, and He promises to never leave you if you’ll just turn over the rudder to Him. He knows your every circumstance; He smiles at your dreams; He shares your pain; He promises to always be a faithful guide; He will provide strength when you are weak; and He promises a most peaceful shore to finally arrive at some day! He gives you HOPE to carry on!

All this is available to me, to you, to anyone who believes that the Master of Creation is in control of our journey, and wants to see us face to face on the final shore where He can say “Well done…come rest, feast, sing and find peace in this place I have made especially for those who have put their trust in Me.” Then maybe, just maybe…we’ll start to know what these rapids on this journey are for….we’ll realize just how sweet the journey was…and we’ll comprehend a little more of how much His love can lift us and bring us through the roughest , the deepest, and the most difficult circumstance or rapids we are going through.

So when you feel you are ‘sinking’ and you feel you won’t ‘rise again’… know that he will hear your ‘despairing cry’ …and His love will lift you up and guide you on to the peaceful shore!

Next time you head out on the water….don’t forget your life jacket and paddle (His WORD and your direct line to Him—prayer). Push off toward the peaceful shore and while you paddle along, hum, whistle or sing a song of thanks. And keep hold of this faithful reminder: “when nothing else will help….Love (it will have) lifted me!”

See ya on the river!

Love,

Judy

Dear Diary,

I wish I were writing to you as I did when I was a young. I wish I were telling you about the test I passed in chemistry, much to my surprise (not to mention Mr. Elemince’s look when he handed it back to me with raised eyebrows and a quirky smile).

I wish I was telling you about the part I got in the school play, only to have gotten a phone call from Mrs. Alwazdrumadic, the drama teacher, telling me that they had made a mistake and were giving the part to Rosie Mustgiterway. You and I both know it was because her dad was the mayor. I wish I were writing about how mad I was and prayed that the crickets in scene three would get loose and crawl up her britches.

I even wish I were telling you about my sixth grade crush on Brent Thinksheesallthat and how he looked at me that one fine day and smiled. I wish I could forget it was Mae Missgetsallthat, walking right behind me, that he was smiling at instead.

Instead, I’m writing to you about the pain from today and wishing I was that little girl once again. However, you did once remind me, in the pages of my past, that it could always be worse.

Did you know that I dream of putting on my tennis shoes, tying the laces and going for a run and being FloJo? Instead, I have given those tennis shoes away. Slip-ons are the footwear of choice, now. Well, I suppose not necessarily a choice, but a necessity. My fingers just do not want to move the way they once did, when I was able to tie a hook to a fishing line or crochet a row on an afghan. Okay, well, so crocheting was a little boring but you can see how things have changed – look at my writing! It’s horrific! However, nowadays there’s this thing called a laptop. No, it’s not a breakfast in bed serving tray, but types as you push little buttons and strives to make you, my journal book, obsolete. It could always be worse – but it isn’t.  You’re still here and, so am I.

I also dream of going for a walk and not stumbling, tripping or fearing a fall. Instead, I take short steps, small steps, steps that slow others down. One foot drags, the other mimicking every now and then. To walk – just walk – without fear. However, it could be much worse and even though they’re short steps, small steps, steps that slow others down, they seem to be the perfect steps when Boo and I go for a walk. It could always be worse, but it isn’t.

My mind is such chaos at times that I find myself dreaming of clarity, where thoughts are able to process, one at a time. Instead, they can be so mixed up that I want to close my eyes and wish those thoughts away and I fear I often near the brink of being crazy. However, I still can write and think clearly (at times!) and it could always be worse – I actually could be crazy but I’m not (or am I?)!

I dream of smelling a rose, a skunk, a cow farm, the sea. Instead, there are no smells, there are no tastes and life often seems rather bland in the sensory area of my life. However, it could always be worse – I could smell the skunk that frequents the vicinity of our bedroom window at night or the dog when she has bad gas – but I don’t.

And oh, how I dream of speaking eloquently and being understood. Without having to repeat prior statements in order to clarify not meaning, but the just the mere words that were spoken. How grand that would be! Instead, I stammer, silently begging God for my words to return, only to continue to fumble upon them as they exit my mouth, should they choose to even exit! But, it could always be worse and I might not be able to speak at all (though some might consider that a blessing!).

I have many dreams and just as many wishes, too. For now, however, this is the present, the norm of what is to be. So, in my daylight dreams, I have decided that I will look up and thank God for what He has done and what He is doing still. For not everyday is filled with only dreaming those dreams, but actually living out those dreams. Days of playing with children and singing every song heard, actually remembering every word.

When on the days those dreams become clouded over with the reality of what is today, I have decided that – still I will praise Him. He never has (nor will He ever), allowed anything to pass through His heart, to His hands, and then into my life that has not grown me or made me stronger.

So, I will thank Him for all the walks, whether they take me into flowery meadows or keep me closer to home. I will remember there are many who have no feet at all.

I will thank Him for my slip-on shoes and give the laced ones to those needing them far more than I.

I will thank Him for twice the beauty I have seen in a rose when once I was so easily distracted by its lovely fragrance. I want it to remind me of those who have lost the desire to be a fragrance for Jesus. I want it to cause me to stop and pray they will desire that fragrance once more.

When I verbalize insufficient messages, I will thank Him that I am learning how good it is to listen, far more often than it is to speak. I want to think of those who have never had the opportunity to utter even a sound.

And I will thank Him for my thoughts (and that I still have them!) and chalk the ‘jumbledness’ up to a non-stop gift of creativeness that will not let me give up! I want never to forget that some have lost all ability to remember those who love them most.

For Diary, you know just as well as I, that I very well could be unable to move my fingers at all, unable to speak or voice the words you have spoken through me. I could be stationed in an immovable chair and have no where to go, no one to see, stationed in a empty room surrounded by strangers and no one comes to call . Instead, though I often am quite slower than others wish I would be, I am able to walk and though at times misunderstood, I am able to talk.

I’m going to go now, my friend, but before I do, I want it noted that I am thanking God for the now – not all the time, but sometimes – the norm. No matter how hard it is, it could always be much, much worse.

Thanks for listening and understanding…

Me

P.S. Don’t ever tell that I was the one who let those crickets loose on the night of the last show. Poor Rosie – I never knew she was that afraid of bugs.

I would like to tell you about the first person I spoke with on the phone whom I had met in an online Parkinson’s chat room. This person is Karen Mankey (aka ‘quiltermom49’). She has a special position with the internet support group called PLWP (People Living with Parkinson’s) as their coordinator of member services. Karen has been involved with PLWP since 2003. I call her one of my special internet angels because she is always there when you need someone to talk to! I’m not sure if the woman sleeps or if she is nocturnal. She describes herself as “a country girl” (that’s probably another reason she and I hit it off so well), and I would like to tell you some more about this very special person whom I also call friend.

Karen is 57 years old, and lives in Washington, PA. She is a divorced mother of four children and one grandchild (eight years old). Her children range in age from 18-33. Before she had to retire, she was a home health aid. Her symptoms were present as far back as 1982 and she was diagnosed in 1998 at the age of 46. She started looking online for information about Parkinson’s and found a a Parkinson’s chat room in 1999 where she was amazed to hear people talking about PD and other aspects of their lives, and they would even kid and laugh in the chat too! She became chat friends with one lady (‘sea turtle’) for several years and then she checked out a new chat at PLWP2 at the suggestion of her friend in 2003. Some of the first people there at PLWP2 spoke directly to her and tried to get her to voice instead of typing. Once she got a microphone headset she was hooked on chat. Karen says “the chat room and my involvement there really opened my eyes about PD.” She is in PLWP2 chat most anytime day or night these days.

And that is where I met her. I was impressed by her openness, sense of humor, and her sensitivity and desire to help others. I was also like Karen in the chat room–didn‘t voice much…sat and read or listened a good while before I got more involved. But I got involved and asked Karen for her phone number one day and promptly called her just to find out more about her. She was so kind and funny on the phone and we have been friends ever since 2003. I often tried to get Karen to fly to Tennessee to visit with me and found out she is a scared to death of flying anywhere!

We were able to finally meet in 2005 in Savannah, Georgia, where we both attended the first Parkinson’s in the Park. That was the first time Karen had gotten to meet many of the people she had talked with in PLWP. Since then, I have had the pleasure of having Karen attend our local support group’s summer gathering 3 times. This event is a casual gathering of Parkinson’s patients and their families and friends at Steele Creek Park in Bristol, TN. I also experienced the excitement and fun with her at the 2007 and 2008 Unity Walks in New York City.

Karen is a strong and resilient person. Since I have known her she has been in one bad car wreck resulting in some broken bones, her home caught on fire, one of her grown daughters has been diagnosed with MS, and on top of all that she’s got PD. But she knows who is in control; she has great faith! That faith sustains her, and is a comfort that she shares with others in PLWP. In our online friendship we have shared many cheers and some tears, but mostly good things have happened to inspire and uplift us. Just like in real life, internet interactions can have their ups and downs. We have shared in some heart aches and some strong discussions, but ultimately we have come back to the one thing that we share that is stronger than any disagreement we may come up against, and that is we know how hard it is to live this battle, and we are determined not to pull each other down, but will let our determination drive us to pull each other up in love.

The reason Karen likes PLWP is because it gave her so much when she first came there, and she feels like she can not work hard enough to pay back what she has received from the place where people with Parkinson’s and their care partners and friends can meet, learn, love and laugh.

When Karen is not on the computer she enjoys sewing, quilting, playing with her grand daughter, and just being with friends and family. She does have a minor obsession with yard sales.

Her favorite quote is: “To thine own self be true” (Shakespeare and her dad used to say that.)

Now do you see what I mean about Karen Mankey? She is one amazingly spirited woman who gives of herself to help others first. Thank you quiltermom49 for being there for so many of us…just when we need somebody to talk to and a heart that understands!

by Judy Hensley

45 yr old, diagnosed w/PD Nov 02

“I will endure for a cure.”

Things I thought you might want to know, and even if you don’t …well here it goes….

I ‘go’ because: I’m afraid I won’t be able to one day sooner than I’d care to admit or think about.

I ‘love’ because: Someone showed me that LOVE was the greatest gift we can get or give.

I ‘laugh’ because: it feels so much better than being blue.

I ’smile’ because: it makes people either smile back at you or wonder what’s wrong with ya!

I ’sing’ because: it is medicine for my soul.

I ‘write’ because: it just feels good to get some of the thoughts out of my head…I only hope it helps more than just me!

Three things I ‘pray’ for: wisdom, my daughter’s future and well-being, that I can always find something to be grateful for in this life

If I could have my dream job: it would be a toss-up between working for the Make-a-wish Foundation as one of the people who get to tell kids what they will get to do (and do it with them) and be a really awesome photographer–who got paid for taking cool pictures!

I ‘wanna be like’ this one person in my world: my mom.

I ‘want to be remembered for’: giving my best at everything.

Why I do the goofy things I do: I’ll blame that on the PD!

One thing I’m glad I’ve learned: the mountain tops are sweeter because of the lessons learned getting there..through the valley and up the steep hill.

What I hope my child learns from me: that the important things in life …are not things!

And that’s the truth…the best I can tell it. Now what about you?

Inspired and dedicated to Judy Hensley

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.

Sherri

Administrator Note:

I apologize for the delay in posting this on Parkinson’s Journey. Somehow it got lost in the shuffle. I’m posting it here today, in the hopes that the someone who reads it, really needs it today and that’s why it was found today! Enjoy this fleeting day and have a great week! -sherri

PD Has Made A Difference

My diagnosis of YOPD, early stages on June 14, 2002 gave me more than the answers to a multitude of health-related questions I had been asking myself. My diagnosis opened within my very being a more sensitive awareness of just how fragile life really is.

That didn’t come as a total surprise to me (how fragile life is), because 12 years earlier, my 20-year-old nephew died instantly in a freak accident. All too often, many of us can tend to look at life through rose-colored glasses and believe that all of life’s challenges happen to someone else.

Back to my original thought, as the doctor gave his diagnosis, it was then I realized that the SOMEDAY I had been working toward; the future that I believed I still had plenty of time to plan . . . . was here, that day, that very moment. I replayed the diagnosis over in my mind . . . . . You . . . . have . . . . . the . . . . classic . . . . . symptoms . . . . .of . . . . . Young Onset Parkinsons Disease, early stages.

As I left my visit with the neurologist, I stepped outside, looked at my husband of then 31 years and said, “I won’t make you stay.” Startled, he replied, “What did you say??!” I repeated myself, and his reply was, “Oh . . . . no . . . . we’re in this together”. He has been true to his word, and has tried to understand, tried to be supportive to the best of his ability.

The two of us have had some pretty serious conversations during these past six plus years. Discussions about our faith, spiritual growth, trust in God’s faithfulness and mercy, our relationship, our future, we have grown closer with each passing day.

Well, SOMEONE has to be someone else’s “someone else” and if this is the road that God has chosen for me, for my family to travel, then I have chosen to work to bring honor to Him and to glorify Him.

I have been struggling with how to write about something really special that I was privileged to experience at the YOPN Conference that I attended in early Aug 2008. I say ’struggle with how to present this’ because I am not sure I could ever describe how overwhelmingly powerful it was to me. I was witness to a most wonderful event….one in which a young onset Parkinson’s patient reclaimed something that PD had taken from her.

The person I am referring to is Kari, an online friend I had met through the Patients Like Me website. She was diagnosed earlier this year with Parkinson’s disease at the age of 31. I told her how great the YOPN Conferences were (and I was drawing from an experience from 2006). To my surprise she said, “I’ve gotten a scholarship to go!” to which I responded, “Let’s share a room!”

Kari said “OK”.

The excitement and planning built from that time until we finally met in Atlanta on Aug 7, 2008. Then the fun of being together in person took hold and definitely made the weekend special in just that respect.

As part of our planning, I had asked if each person in our room would lead a devotional while we were going to be in Atlanta. All of the ladies said they would. It was then I first heard about Kari’s ability to do sign language. She told me she had been signing to praise songs at her church until December of 2007, when the Parkinson’s symptoms made it too hard for her to do. She eluded to how special this talent was to her own worship experience, but I would not completely know how much it meant to her until the night of Aug 8, 2008.

Kari and I had gone up to our room early in the evening of the entertainment because Kari was not feeling real well and the food for supper had not appealed to either of us. When Becci got back to our room, we decided we would have our first devotional, and Becci presented it and did a wonderful job. She explained to us that she felt God had put her in her circumstance at this point in life to help minister to others. She also told how she was not going to let Parkinson’s define her life or confine her from doing what God wanted her to do. Shortly after Becci concluded, Kari asked to borrow my headphones and she listened to some music on her computer and made some abbreviated hand motions for a few minutes. She then turned and told us that she thought she might be able to do signing to a song, but asked if we would we understand if she started and could not finish.

Becci and I both told her we understood and waited expectantly. Kari held her hand in midair for more than a few seconds, took a deep breath, and started the music by pushing the mouse pad. She then sat in a chair in our hotel room in the Omni in downtown Atlanta, closed her eyes and signed the words to a Christian song “Never Let Go” in the most worshipful manner I had ever seen. It was awesome…it was as if she had taken back something that Parkinson’s disease had temporarily taken.

At that moment, I think Becci and I realized why Kari had said it was so special to her. It was her act of worship to her Lord, and we were able to enjoy and rejoice with her when she was finished. We were so excited and in such awe, we asked her to do another one and she did. She even smiled a few times while she signed the second one.

We stayed up way too late that night, but it was just a time we didn’t want to end. We had experienced something special together, and kept talking and laughing for several more hours. I thought I was going to Atlanta to learn more about dealing with Parkinson’s from a program set up months in advance. I did take away a few things from the program during the day and a half I was there, but I will never forget learning something very special in a room with two friends with Parkinson’s, who just wanted to uplift one another. I saw that the human spirit, in tune with God’s, can do more than what we can ever imagine.

Thank you, Kari …for sharing your very special gift with me that night. My heart will always recall how special it was to praise God through our weakness, obedience, and encouragement! His strength will overcome any obstacle in our way if we just give it all to him! Phil 4:13

Judy

http://psalm63-4.blogspot.com/2008/08/coming-back-to-life.html

http://dailystrength.org/people/3737/journal/1246827

Report on the YOPN Conference in Atlanta, held Aug 7-9

Part I

Maybe I’ll get this summary done of some of the speakers I heard at the Young Onset Parkinson’s Network Conference Aug 7-9, 2008 in Atlanta, GA before the web cast gets online at the National Parkinson’s Foundation‘s website (sponsor of the conference).

This was the 6th YOPN (Young Onset Parkinson’s Network, put on by Young Onset Parkinson’s Assn) Conference and before I tell you about a couple of the speakers, I must commend the patient coordinator, James Trussell of Georgia, and his team for an outstanding program and conference!

This was my second opportunity to attend the YOPN conference. I went in 2006 to the one held in Reston, VA and was amazed at the program and the opportunity to network and the things I learned in a short weekend. If this year’s conference is not yet on the NPF’s website, then you can view some of the 2007 conference held in Chicago, IL.

The first morning of this year’s conference, the featured Parkinson’s patient speaker was Tom Curran, a news anchor for FOX 13 in Tampa Bay. The title of his talk was “Hope for Tomorrow” and he sited some people he knows in other battles with illnesses who have found direction and hope for tomorrow too.

Tom himself noticed symptoms in the fall of 2004, was diagnosed with essential tremor in the summer of 2005, and was finally diagnosed with Parkinson’s in April of 2006 after seeking a second opinion. He mentioned that he had just recently told his employer about his illness. He talked about having a hope for the future through the example of some others who have taken directions or gone in directions which allowed them to not lose hope.

Tom told about Josh Hamilton, a baseball player in Tampa Bay who, upon graduating high school, signed a 4 million dollar baseball contract in 1999. But demons of alcohol and drugs brought Josh to the brink of disaster until he took 8 trips to rehab for his problem and has been clean and sober of drugs and alcohol for 34 months. Josh now plays for the Texas Rangers and has done well in the Home Run derby. Josh freely gives credit to receiving directions from his Lord and found a reason to not give up hope for a recovery.

One of Tom’s aunts works for Joni Erickson Tada, a quadriplegic and inspirational Christian writer and advocate for those with disabilities. She sent Tom a note upon hearing of his diagnosis. He said he was humbled to think that she wrote the letter with a pen in her mouth, and with it gave him the words to encourage him to take directions from the Lord and to not give up hope–even when everyday may seem to be a struggle.

He also mentioned the TV reporter Tony Snow who recently died of cancer. He said Tony did not spend time asking why he had cancer and expressed his thoughts about sicknesses as part of our lives by stating that our maladies may define our existence but with the Spirit of God a direction can be found for living.

The last person Tom talked about was a 28 year old man who had Parkinson’s and had contacted Tom when he heard about Tom’s diagnosis. Tom invited the man to the stage and did a short interview with him. The man’s name is Matthew Greenstein.

Matthew shared how he had let the diagnosis of PD defeat him, drag his family down, and made him feel like he wanted to be alone. But fortunately, Matt’s family dug in and intervened and brought him back to where he found some hope and has had a medical and spiritual transformation.

Tom concluded his presentation by telling how his faith in the Lord gave him hope, and that the greatest thing we can do for ourselves is to have faith that our hope can be shared with those around us and we can face an illness like Parkinson’s with an attitude that will make a difference. He finished with a scripture from Phillipians 4:6-7, which he indicated were the directions and hope that he was going to follow : “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

I think Tom did an awesome job, even though he admitted he was quite nervous speaking to the crowd of Parkinson’s patients and caregivers. His humbleness and openness was inspiring and uplifting. I hope he continues to encourage others for many years.

Judy Hensley
8/29/08