Hello Monday and a New Year

I have been around reading all the wonderful things that are being written by People with varying degrees of Parkinson's, just jumping from blog to blog and I am so proud and amazed at the work that is being produced in a days time. Jointly it mounts up to volumes of written word that so many are missing. Our hearts and souls are being poured out to the world and so many are missing the point. I am so taken back by the ability that is out there. I cannot explain the degree of humility I feel to even be known by some of these people. These are quiet souls in so much pain who continue to climb the mountain and survive. How lucky we are to have some one say that they are mentoring one of us to a higher goal. I am so honored to say that many have helped me in so many ways to climb some awesome hills let alone mountains. New blogs are being formed every minute and none must be ignored....In every story a thought is captured forever. The pleasure of my life continues to be the ability to type a word and have it come up on the screen in front of me and excite me. I fight so for a quiet moment just to type and those minutes seem so far apart lately. I know the holidays require a lot a this attention as does everyone around me. My mother is rapidly slipping away and will soon not know me....My family doctor of thirty or more years slipped from her memory this past week with not a second glance behind her. She tells me everyday how terrible it is to loose your memory......I hope it is only a temporary loss......and then when you get to heaven you can smile and get them all back again. She doesn't seem angry about this loss but it causes her to hang on closer to me and I am not the most steadying force these days....So often I wonder who is the caregiver in her mind. She still insisted on washing the dishes last night though I knew that after she went to bed I would go back in the kitchen and rewash them and put them away. She never saw what was left behind. I see what my mother is going through and know that my time will come soon. I try to not worry when she asks me what was that behind that house up the road? It's a huge red barn that has been visible out that basement window for thirty years are more and what is that little speck in the sky that she watches and it never goes away? My son told her it was a satellite and it might be the Russians monitoring our every movement when we got in the car. She seem to ponder that thought and store it away. When we left to go home. She ask Matt if we needed to let the Russians know we were headed home as he turned on his monitor and she watched it intently. She'll lay in by that window tonight and watch that star or satellite and I am sure the questions will all be there with no answers to follow.... While I was in Ohio visiting Dixie, I bought a tee shirt that says quietly "I think I can, I think I can" and then for Christmas my daughter in law gave me a tiny little glass train.....and on the card it said:

YES YOU CAN No matter what the task maybe be, How hard the course you face Believe that you have what it takes To run life's toughest race.

It's a New Year

As with every year , the week between Christmas and New Years leaves me cleaning and organizing as if a winter blast was going to leave me totally house bound for the next three months and all food and concerns must be stocked in to survive. This year surviving is different than all other years. My thoughts stray from socking in food to, "Do I have enough meds for me and mom for any week long spell? Is the gas tank for propane carrying enough fuel for bad times and is the wood carried to the back door to get dry for a fast burn in a cold snap."as I it sit here I realize the changes that have come to me in this past year and my thought is,"How much longer will I be walking? The pain is very predominate now.....not just in one spot but many and it puts an end to any thoughts of a good nights sleep. Every minute comes with a price tag and the cost is high. The meds are increasing and the steps are getting much shorter. The sadness in my families eyes shows up more and more as the bubbly person I use to be disappears into the unset. I have no mate to share these lonely times with yet God has presented me with a host of friends that monitor my every hour. Christmas was really kind of sad this year, as I gave up all responsibilities and sat and watched from the side lines knowing every bit of my strength was being pulled out of me and it would take days to recover. Even the little ones watched as My steps became more labored while my meds went to off. Shopping did not exist, nor did baking, nor did Christmas in every room. Cards got out but not all.....gifts got sent...but not all.....friends were called....but not all. Life was taken away from me ......but not all. For the gift of the time left behind I thank you Lord and promise to cherish each second and try to make everyone aware of your wishes for a cure......thank you and good night pokie

Our PLM Parkinson Unity Walk Team

There once was a small group of patients

A disease called Parkinson’s they did share.

We met on a web site in cyberspace,

while looking for some one to care.

We banded together as friends do

Ideas began to flow.

Now we are a team of many

All searching for a goal.

Once we were just over two hundred

And now are over three thousand strong.

We show up in so many places

in colors and varieties one and all.

We banded together with just a strong hug

And “pinky swore” did we.

Among the tall buildings and thousands that walked

That God was our leader to be.

We set up a team for the Unity Walk in April 2009

We had been four in the year before

wanting to return.

This year we will be over twenty and our passion

HOW IT BURNS!

Our emblem is two tulips

held together by a thread.

One stands up ever so straight

the other curves his head

Our colors are so precious to me.

They are yellow and bright, bright red

We come from states across this land

And some places across the sea.

We never miss a day or time

To share this Parkinson’s Disease.

pokie too 2008

MERRY CHRISTMAS

Just a very brief word today and it comes straight from my heart. I wish you love today in every way. I wish you happiness on all sides of you as you walk down YOUR path in life. Never forget the purpose of Christmas all year long and remember Christmas is the celebration of Christ's birthday. What gift will you give him this year? I will give him me in every form and I will try to thank him every day for all he has given me. Peace to all and have a very merry Christmas love always......pokie

Good Pennies from Heaven

When I first logged on to Patientslikeme.com their was a lady posting under the name Ukelady and it never crossed my mind that UK meant an instrument I though it meant living in the United Kingdom. In her profile picture she wore dark rim glasses and gave no hint of the very talented little old hippy that was dwelling within. She posted that she was going to be in the San Francisco Unity Walk and needed support. I read this and decided instantly that her and Btrflynana needed to meet so they could walk together and walk they did. Now the closest of friends and visiting all the time. In November I boarded a plan and flew to California to meet these two and what an amazing pair had formed. Marian would still put those glasses on but way down on her nose and look over them like a little kid who was getting caught at it. She's a tiny little thing with beautiful long hair and the things that go on in that brain. She refers to herself as a math geek.....She is actually a space engineer for Lockhead Martin. She does beautiful bead work and just recently designed the Tee Shirts and Hats for Team Patientslikeme . They are selling at cost on Cafe Press and are a work of art. Depicted on the shirt are two tulips. One is standing tall and the other is drooping, being held up by a thread(Internet thread). I just love it and hope she sell thousands......While I was in Californina, I had Marian sign a tee shirt I have traveled with all year and she did as Ukelady. This may be her last signature as Ukelady. Very soon after she changed her name to GoodPenny and it stuck.....I am so happy to see this little gal just grow into her potential. Marian has Parkinson's and is still going. Check out he blog...http://WalkingMyPathWithParkinsons.blogspot.com and please go to Cafe Press and check out the hats and shirts. I can guarantee you there is more to come...goodnight pokie

Heidi's Favorite Cookies

My daughter Heidi has always had a off sense for sugar.....Anything chocolate is good but not anything too sweet. I have this cookie recipe that has always put a smile on her face at Christmas time and have always been called"Heidi's Cookies" They are made with jello and so the plate could be filled with every color imaginable for little late night cookie people to relish. They are not overly sweet but you can add more sugar to your taste: 3/4 cup shortening 1/2 cup sugar 3 oz. package of jello 2 eggs 1 tsp. vanilla 2-1/2 cups flour 1 tsp. baking powder 1 tsp. salt cream together well and add flour. bake at 400 for 6 to 8 min depending on your oven. Do not over bake. I roll my dough in a little ball and smash that ball with a figured glass bottom, dipped in sugar.....make them small for little hands and tiny fingers...just one bite.....love pokie

Two Crazy Ladies

Two Crazy old Ladies

Ventured out on the road yesterday.

They traveled to Springfield

almost a hundred miles away.

They started at four in the morning

In cold rainy weather forbidding.

a chuckle here and there and even sometimes grinning.

Now what might you say was the reason for travel,

Gramma’s heart you see was trying to unravel

The doctors up there

In this fine big city

Had stitched her and mended

and made it all pretty.

At eight in the morning

no coffee had she

which makes gramma shakey

and to some wobbly.

But in her confusion

of the world as it is.

She told me this story of what they had did.

“They put me in an oven

All snuggled up tight.

I thought I might sleep

But thought that not right

And so I just laid there

All cozy and snug

Just trying to remember what it was I had done.

How had I got here

And what was I to do?

I guess I’ll just cat nap

And wait til they are through

For life’s not so bad

In the state that I’m in

The Lord’s standing beside me

And being my friend.

Just me in this oven all snuggly and warm.

Pokie Too 12/2008

Today With PokieToo and Parkinson's and Acute RA Disease: Today I Wish You a Day of Ordinary Miracles

Today With PokieToo and Parkinson's and Acute RA Disease: Today I Wish You a Day of Ordinary Miracles

Just Ramblings

I took a few days off to get energized again. I seem to need that more and more lately. So many really neat things are happening and it is truly unbelievable that just a year ago I entered this totally visable world I am in. When I recharge I get completely away from the computer and go to my son's and take care of my five month old grandson Ayden who I nick named "Little Jesus" It seems after holding him and him touching my face with those chubby little hands, the world has new dimension and meaning. This morning I was awake at 4am, sitting at the kitchen table writing something that was going through my head and heard him singing in the bedroom, all by himself in the dark. I quietly snuck in there to see what he was doing and there he was in his crib with the street light dancing merrily across the wall. As soon as he saw me he held out his arms for me to pick him up and we ventured into the living room where I had his bottle waiting and we snuggled down in the recliner with him pulling the bottle out every so often just to look up at me and make this little love sound. There is no way I will ever be able to explain what this does for my state of well being.....There are no words for that smile. This is what I was writing when he woke up: A "quiet moment" just entered through the garden gate He's standing in the corner so reaady to play,..... but waits He comes to visit sometimes as a messenger for a thought. Or he storms in like an angry child---Demanding and screaming for some slowness in my walk.. He's a very knowing friend I enjoy his company so. He knows me better than many do. Though sometimes our visits are few. I'll leave that garden gate open just so far today. To encourage him to come in and guide me on my way. For without his daily visit, I'll surely never win.... " Confussion" and " Just Plain Tired" They come to play instead, Which leaves me no time to contemplate the things I've really said. So as the day progresses and I play with all my friends, The evening comes quite quickly. My body needs to mend. So off to sleep I go with meds and phone in hand. Praying quidance in this journey, that never seems to end And thanking God this day for all my firends That came along to play ...... pokie 11/2008