After all I've done for you?

How precious life is to me,yet I have no fear of dying. I hope all that know me realize my faith keeps me ever driven. God keeps me in perpetual motion. I am in constant search of something I have never seen...a new color, a new sound, a beautiful sunset or dawn. Parkinson's tries to slow me down and then I realize that I have no time for pain nor does anyone else have time to listen to me complain. My feet have never stopped in the last week and I LOVED IT. I covered miles all said I should not, overcame a new fear I have developed of driving in St.Louis by myself and most important I had conversations with people I should have talked to years ago. Surely in these conversations you take the possibility of hearing things you don't want to hear but when all is said, your life is richer by far. I would take this opportunity to thank Russ and Heidi for listening to me babble on. I have spent a week with two of my many VBF and feel the warm glow it has produced. Thank you Lord for holding my hand as I ventured on in discovering the art of being a better servant and also thank you for whispering in my ear once years ago, "After all I have done for you?" when I threatened to give up and go back to bed....love ya Pokie

Tiptoe lightly

There are several areas I have on my mind today. I only ask that you stay with me as I wander through my thoughts....I am not really lost just have a lot to cover.
First I have discovered this very interesting web site http://www.caregivervillage.com/social media. It cost to enroll but they will donate one dollar to the charity of your choice and the site is full of games, emotions and very creative thoughts for the emotions we all deal with on a daily bases....There are different areas within the site ...Cancer, care giving and so on....games, stories and mysteries and good information.
Next on my agenda is my granddaughter, Katie.. Several days ago she sent me this letter.I don't know where she got it or if she found it and added to it, but it touched me more than she may know.
"Yes I'm a girl, I PUSH doors that clearly say PULL, I laugh harder when I try to explain why I'm laughing. I walk into a room and forget why I am there. I count on my fingers in Math. I hide pain from my love one's. I say it is a long story when it really is not. I cry a lot more than you think. I care about people who don't care about me. A broken nail is painful. I try to do things before the microwave beeps. I listen to you even when you don't listen to me......and a hug will always help.......I'M A GIRL! and all that from a ten year old girl I am very proud of........
Next is the lead article in the Southwest Parkinson News..."CHANGING YOUR BRAIN" This works, I have tried it and it works. When our brains shut down a pathway, open a new pathway by repetitive action or exercise. I bounce a small ball, daily, from one hand to the other. My brain has forgotten how to play like this and just as soon, it will forget how to grip something and it will fall. I sit for a certain time each day just playing ball with myself and my coordination is improving. You will also see your walking and balance improve if you tell yourself to improve your posture and "stop those Baby steps." Try it and see.....I challenge you....." Use exercise as a psychological tool to help protect, repair and optimize brain function." BUT only you can do this for yourself...good luck!
The fourth thing is an article in APDA News letter St.Louis Chapter on "Medications to Avoid or Use With Caution" I was shocked that somethings appeared on there. One of the major standouts for me was hydrocordone since I have had two knees and a hip replaced and another is Xanex for sleeping.....he article was eye opening to say the least. It was authored by Joanna Hartlein, APRN, Family Nurse Practitioner.
Well all of this should keep you busy in your waking hours be they today or tonight......God bless and keep on going.......please.......... love ya, Pokie

Dreams

Well my favorite time of the year has arrived but this year with a little apprehension. I said last spring I would never spend another Winter in this house. Well time is marching on and here I am. I have this uncontrollable urge to be by myself in the country with my things, in the quiet. It would be like returning to the 1800's for I have spent my life collecting antiques that no one now seems to want or have space for (kids that is). Magazines a hundred years old, quilts galore, farm equipment and old, old hand tools...and .......books and books and books. I will have to call a mover if I find a place. The funny thing is I can almost see it in my mind. I don't plan on being a burden on anyone.....I just feel this need.

As I have been getting ready for this......I realized just how much I have wrote since October of 2007. Boxes and boxes, some published and not...some just notes on envelopes and something wrote on the back of a napkin that seemed real important at the time. I guess if the day comes, I will just go through the house and point to what to take and let the kids do what they wish with the rest.

Funny how some things seem so important. I really want a fish aquarium. Lots of flowers and an East facing window to have my coffee and read my Bible at in the morning. Nothing big just homey and comfortable..........Ah, the dreams of this old brain. I must get to bed now. So pleasant dreams to all love Pokie

A Special Idea Today

Last week I spent almost an hour getting an MRI. The first one in a long time and this one was on my infamous left arm....the first location of my PD symptoms. and of late the location of extreme unstoppable pain. Nothing would help. Pain meds didn't phase it and Arthritis meds did not touch it either. I started ultrasound a week ago and had two sessions before my MRI. Last night my Ruematologist called me at home....PERSONALLY...I knew I was in trouble. It seems all physical therapy is to stop and surgery is scheduled as soon as St.Louis can get me in. My left shoulder is disintegrating and rapidly. I see my GP on Thursday and Orthopedic Doctor Friday. The real thing that bothers me is that pain has started in the other shoulder too and two shoulder surgeries excites me about as much as two hip surgeries. NOT AT ALL! I really have no choice though if I am to take care of myself.
God and I talked about this most of last night. I really have no fear of going into the hospital, it is coming out and to what. Ordinary people don't like sick people. They like happy, healthy people...not "downers." I have always shrived to be up and smiling. God has always helped me as he will now. As I heard last night.....my mission is coming....I have to get ready. This is on no medication. Can you imagine what I could come with on some good medication?

Now some more happenings......Monday I spoke to a caregivers support group in Effingham, Illinois. I had a full house, and had a great time. We ran into overtime and the love was really flowing. It was through Heartland Human Services. I had no notes. I just spoke from my heart to alot of people that just needed "SOME LOVING" up close and personal. I took the quilt and she still has all her charm. They OOHHHHHed and AHHHHed her and everyone touched her and felt her heart. That was my first speaking engagement and it was easy. But figure how odd this is for me to be ininvited there and come home to a phone call as to what was next.....My Lord works in mysterious ways, but he is the best friend I will ever have......

Last but not least, I have been visiting with Mattie Stepanek through his poetry, even though Mattie died some years ago to a rare form of MD. Mattie never made it to his teens but experienced life with an awesome outlook and eye. This is one of Mattie's poems....

LEAF OF THE DAY

Today,
I think I will be a tree.
Or perhaps,
A leaf on the branch on a the tree.
I will feel
The gentle breeze.
And then I will filp off of my branch on my tree
And float on the wind.
I will go
Back and forth in the breeze
All the way down to the ground
And after I rest and say "Hello"
To the grass and dirt and bugs,
I will call to the wind.
'Come and take me
to visit my other leaf friends
On all the other tree, please'

And the gentle breeze
will come
and pick me up
So that I can jump and dance
With all the other tree stars and tree-flowers
That God gave the world.
What a special idea
To be, today.

From "Heartsongs" by Matthew Joseph Thaddeus Stepanek

New Agenda

The PLM Unity Quilt came home today for the holidays and arrived just in time for my home nurse and PT lady to see it and and it looks like a new Symposium is wanted in the area. I had successfully pulled one off in May of 2009....my first with no experience, so this one should go smoother and PD has come so far visually since then, especially in our rural area in Illinois. That has always been my plan to get us out and let the world see just how productive we are. So often the plan for a PD patient is to put them in a nursing home and give up....No need.....we can and will survive if given just a little help.

These are the things on my new agenda:
Love, love and more love.
Symposium next summer for Fayette County
Team Patientslikeme is up and taking new members and donations for the 2011 Unity Walk
Finish all the stories behind the Unity Quilt and let people feel and love her.
Go to Washington, DC in February for PAN
Work with the city for a better Chronic Disease Support Group
Unity Walk in April and praying for 30,000.00 in Team donations, which would be double last year.
Make these diseases visible and get them cured or at least let us have a much better Quality of Life than what they are offering now.

Sounds like a lot of work but I do not take being given a new chance to walk lightly and will continue to fight with all I have...love Pokie

Weathered and Worn

See this old barn. She's standing so proud, though her supports are very compromised and she appears quite faded. She has taken repeated attacks against her exterior and still remains true to herself, and Oh, the stories she can tell. She is very large by general standards and in some places very disorganized, yet she stands proudly for all to see. I bet she never even thought of making a "bucket list" or giving up. I passed her two weeks ago on a journey to my past.
You see two months or more ago I had given up and was making lists of things I really wanted to do before I died. This is so totally not me but none the less I was there, making my bucket list.....Me the person who cheers everyone else up was failing and fast....I was just tired. I was tired of thirty some pills a day, I was tired of hobbling everywhere I wanted to go. I was tired of feeling ninety when I was sixty I was just tired! Though I was ready to check it all in, God must have had other plans for me. As he usually does, He sent me an option. Chuck it in and give up or look around and try again....I can say this much about the whole process....it scared me to death but now two months into it I have never been happier in my life.
As humans in God's world we really are not given the option to quit, no matter what. Much like this old barn I have been beat on and weathered many a very strong storm and YET survived to see the sunshine the next day. If there is one thing I have had all my life is faith. Sometimes it has made me appear to be a pie eyed "Pollyanna" and I have often been referred to as "just a little off" but it has gotten me to today. When God decided to show me what it was to be truly loved, he did a beautiful job, as always. I passed this barn on a journey to my past and came back to just stare in amazement at it's beauty. I hope I make you proud. Lord, were you to travel by me and just take a glance. I'll not give up again and I truly thank you for the faith you had and still have in me.
"No one can go back and make a new beginning BUT anyone can start from now and make a happy ending." and "We are never given dreams without also being given the power to make them come true" "Why do we close our eyes when we sleep....when we cry, when we imagine or when we kiss? Because, the most beautiful things in the world or unseen." Love ya Pokie

"Mongoose 55"

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I was just totally blown away when I opened this package. Embroidery is one thing and then there is embroidery. Every inch of this is stitched with words from friends. This is what she wrote me,
"When I decided to make a panel I came up with the theme, 'Parkinson's doesn't define me,' I was going to embroidery words on the panel that I would use to describe me, but I could only come up with about five, so I made the tulips and sent them to friends and family asking them to write a word to define me. I was expecting things like, short, freckled, Irish, something one word each.

Instead, people wrote longer and very nice things about me. It was very sweet and touching, but it really wasn't WORDS to define m. So I decided to change my theme to "See me, not my Symptoms" Once I did that, it seemed I had to explain the tulips which is why I wrote on the flowers my thoughts. I added the ladybugs because I love ladybugs and I wanted to add something personal but also my name Donna, means Lady and legion has it that ladybugs were named for the Blessed Mother and so was I......

Now just how beautiful is that? Love Pokie

Sara-Elizabeth Clark....Four Stars for Epilepsy

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I would like to take this small chance to tell you about someone I consider a friend but I may never meet. Like so many I come across in this battle against Neurological Disorders, they fight their battle and so few hear their story as they do so much for their cause. Sara is just that kind of person. At 16 months of age Sara began to have Idiopathic Benign Childhood Seizures. She is now fourteen and medication and seizure free. With most teens this would set them free to leave EP far behind, but not Sara. She writes a monthly newsletter about Epilepsy and it's happenings. She has a web site http://Ttsnotwhoiam.com and she just finished her first book by the same name. Ok, take a deep breath, this year for the fourth year she will host a Run Walk Event on June 6th at The State University of New York at New Paltz (SUNY). In the past three years Sara has collected 50,000.00 dollars for Epilepsy Research and I would like to invite anyone in the area to participate or if you just want to donate , visit her site or contact the Epilepsy Foundation of Northwestern New York. Sara, it is my pleasure to share your illness and hope some of your enthusiasm finds it's way into my body also....keep up the good work' love ya Pokie