Here is Parkinson's in Washington, D.C.

Thank you Rep. Shimkus for giving us such a warm welcome to your home away from home. Our small band of family and patients with Parkinson's Disease so appreciated that warm smile that gave us the extra strength to complete our goal. If you look real close you can see the smile you are bringing to Bill's face as we kid him about you two dapper guys with so many good looking women. I hope we explained our plight well and we pray for your continued support with the caucus and bills coming due. Thank you again Pokie

Everyday is new......

The funny part of Parkinson's Disease is that no two days are the same. You wake in the morning and your first thought is what will move today? Sometimes only the brain dances out to play and some days the whole body gets involved. Everyone of us is so different. They say different attracts. In the Parkinson's community this is so very true...all ages and sizes, all genders and beliefs yet when you get us all in one room how well we bond. Is it because people with Parksinson's so often talk with their heart and eyes instead of worrying about appearances, we struggle on and try to smile. While traveling this past week, I met a brother and sister team fighting Parkinson's Disease. She was his caregiver and was very efficient but so hostile. He was so quiet and never said a word, mainly because he was never given a chance. She let me know early the whole program we were in did not fit her taste and when I had to go take a nap for two hours in the afternoon....I was hurting her team. Come to find out I wasn't even on her team just sharing the table....Later on the Hill I got a chance to get a few words in with her brother while walking between meetings. He turns out to be very angry at the whole business of having Parkinson's. He is so highly educated and at the top of his field and unable to use any of his skills. His natural question is why....and what do I do with all this knowledge.?My answer was this. Re channel as only you can. You know your goods and bads. Take the best and run with it. Try not to look down always. Try to focus on up. Find a passion in all this and push it to the max. Be it writing or travel, crafts or painting or just meditation. Life, when you are diagnosed with PARKINSON'S, looks so short and every minute must be used for a passion. Some focus on a cure....I focus on the relationships and what brings that sparkle back to your eyes. Some people, I have found, may have never found their passion and still may never. It's not easy. And once you find it you will be constantly bombarded for following it, but if it is God's work,you will find a way and you will enjoy every second of your new found life. The cliche is that one door shuts and another opens....yes there is always something else and no shortage of people with needs and troubles. The gentleman I talked about was a passing friend. I may never meet him again but it will never stop me from wishing him and his sister well.....her peace with the world and he peace with that same world through the many great talents he has.......love pokie

There is a story.....

There is a story about four people named: Everybody, somebody, Anybody, and No Body. There was an important job to be done and Everyone was sure that Somebody would do it. Anybody could have done it but Nobody did it......Helen Lourie Marshall Now is not the time to be any of these four people if you have a neurological disorder. If so you must stay atop of the daily changes in your world and your method of doctoring....With the stem cell funds released a simple call for a doctor appointment may take an hour.....especially if you are searching for a neuro who is also a movement disorder specialist. We should all compose a letter of entry for ourselves and start mailing it to the larger research areas asking to join their program or become a part of their studies. Don't be left behind or fall through the cracks. Things are moving fast. If you have a disorder and are expecting a child or grandchild, let them know because of the umbilical cord. This has to be taken care of ahead of time....This is a lasting thing you can do for your family that will last forever.....love pokie

Here's to Finesticher......always

February 13, with a very sad heart I posted as best I could, the fact that I would not be going to the PAN Forum in Washington , D.C. next Saturday. The denial of my scholarship just totally knocked the props out from under me. I can honestly say now in hind site that it was a good thing. Nothing should ever be taken for rated in life. Though I had planned for many months on going, the appreciation of the event was not truly felt until I was faced with not going. I tried to be matter of fact about the whole situation but finally just broke down. Had it not been for one very special person, whom I love with all my heart, I would be sitting at home this Saturday night asking, "Why Me, on a year when the whole Parkinson's community will come together for a stem cell victory". That one and only person travels this circuit and takes so little credit for what she does and gets done. I believe nine years she has fought and fought hard for Parkinson's awareness. Not always in the best of mental or physical health and despite all odds she continued to bring the health news of the day to everyone on Patientslikeme.com. She never received pay and very few thanks. She's a webmaster and one of the most intelligent women I have ever known. Her current project is PWP NEWS and it is the best I have seen. Everything that is going on in the Parkinson community, worldwide is listed in this newsletter daily. she not only works with Pan but PDF and yes that is her on the cover of their DVD. I met her in October of 2006 when I signed on to PLM. I knew nothing about the computer world and to me she walked on water. Then in October of the next year I won a Scholarship to Atlanta, YOPN Convention. and Carolyn was going to be there as a presenter. She walked up behind me and slipped the DVD in my pocket stating I will need this later....I just could not speak.....I admired her so and here she was in the flesh. I went up stairs a little later and was proudly laying all my treasures out on the bed , when I noticed that the lady on the DVD was Carolyn. I about had a heart attack. I grabbed it and went back down stairs and said,"Sign this". She looked at me so surprised....not knowing that very seldom in your lifetime do you meet one of your mentors. Yes, I am talking about Carolyn Stephenson or Finesticher as we call her on PLM. When Carolyn found out I was not going she kicked into high gear and called everywhere getting me in. By Tuesday morning arrangements were being made for me to go. Me going to Washington, D.C. a week after President Obama signs the Stem Cell Research Bill back into funding...meaning a life line has been sent to so many with Neurological Disorders living with no hope for a cure. To Carolyn I can only say she has played a huge part in this day, though she would never admit it. She never stands up and shouts but she is none the less so effective in her own ways. I'll be sixty three Saturday and when I grow up I hope to be like Carolyn even though I believe she is younger than me. I'm sorry dear, but I cannot help but follow you around in wide eye amazement and awe..... now before you find some way to delete this, want to say thank you from the bottom of my heart for ever and you and Pegs first meal in Washington is on me...love Pokie

PLEASE GIVE THEM HELL

Sometimes you just have to call on our faith to give you the answers when your silly enough to ask them. Three blogs and millions of words, flights to places I would have never went, putting my head square in the middle of the chopping block and handing the butcher the knife, a Walk, a support group, and an exquisite quilt and I still wasn't good enough for Washington, D.C......l know better than to question. No I am not giving up, and I thank all that backed and encourages me this past year. I will just work toward next year and save more back.....if I was meant to be there I am sure I would have been......Thanks again to all that pushed me on and to the ones that are going .....PLEASE GIVE THEM HELL FOR ME!!!!!!!!

The Past stands by, a bank where man may borrow of what he will to shape his own Tomorrow. H.L. Marshall

STANDUP AND STANDOUT

The time is right and we all need to help out. There is something important for all of us to do. Look around and size up your life. If it's good right now it could instantly get worse. .. are you ready? If your the senior in your family, are you stashing back just little here and there. Start a penny jar for the grand kids. Have them hunt pennies and save them in the jar. Sit down with them to roll them. Let them go with you to the bank. Talk about the financial crisis with them. Help them to understand their lifestyle is going to change and make them a part of getting it back on track. Small things like......Paper towels and toilet paper......sounds funny but be teaching them they CAN live on less. one or two paper towels instead of a hand full just to be barely used and thrown away. Get on their case......Watch what they are doing and correct it.As seniors we play a huge part in solving this problem. We are the last generating to remember cheap......where the name on our jeans was Levi and it was ok....It was made in the USA. This is about America and it's unique people and how God is showing us the way.....as always POKIE.

Today is Thursday

Today is Thursday. The day before the weekend. The time when all the areas of my life come together in total confusion for two days of listening , laughing and savoring all things around me. My family, as all do these days, are so busy with games and school events. Cell phones and texting have taken over the face to face conversation and all things seem to be lost in cyberspace only to be retrieved if you could remember the right password. What kind of mood was I in when I ventured into a conversation with a fifteen year old, only to find out that I was the last thing on the plant earth she was paying attention to. How about the eight year old who gets your attention by telling a story that starts out "Gramma Nee Nay". Right there he has me and I'm listening and he makes up some wild story and I believe every word. So tickled someone actually has singled me out to talk to I pass the story on....only to see him standing in the corner grinning as I realize he made it all up. There is one trying to impress the other and little fingers and hands are just flying in search of the perfect treasure that I have stashed away for them to see at a later time. And then there is my "little Jesus"Precious little guy, just seven months old, who follows you with those huge blue eyes as the curls fall in ringlets around his face. You see the perfect cherub starting at every move you make. He pulls you in just like a magnet and begs you to pick him up, without a word being spoken. The kids pile in on the floor around him and he grabs their faces and gives them kisses and pulls their hair while Gramma Nee Nay watches from the side lines and knows "Life is Still So Good"

ALSTDI plus MLB = STRONG

Today in my news letter from ALS Therapy Development Institute it was announced that they have joined forces with the National Baseball League to commemorate the 70th Anniversary of Lou Gehrig's retirement from baseball on July 4th, 1929. The awareness program will take place on Independence Day of this year, and will focus on raising awareness and empowering all of us to take greater action in the fight against ALS and in doing that helping all the Neurological Disorders get closer to the cure. But what you make of this opportunity is up to you. I invite you to take part in the ALS Awareness program using the same proven grassroots fundraising methods that have accelerated the research at ALSTDI in the past. We envision a day in which hundreds of families and neighborhoods across the country come together on July 4th in a show of unity. Go to www.als.net. A cure for one could be a cure for all!!!!! love pokie

A GOOD DAY FOR DAYDREAMING

I wonder if God intended us to go through mood swings or were we suppose to stay up and helpful always...Some call this malady, I am enduring, brain fog. Others call it depression and if your real fancy you could call it writers block. I just call it a funk and it goes with this time of the year. This house becomes pretty small in January as does my world. My brain just feels so sorry for itself and looks for stimulation. Today I addressed housework so when the weather changes I can get out. Some of the nicest things have happened lately so I have to realize that not everyone is having problems....Being a redneck though , I am glad my Christmas lights and tree are down and packed away and can spring be too far away because the first seed catalog graced my doorway today......I think I'll bypass the housework and sit in the recliner for a while and day dream.......love pokie

THOUGHTS ABOUT ROSEMARY

If you have never visited Patientslikeme.com you may have missed a very unique lady and one I have loved since the first time I read her posts on the forum. Long before I knew what a forum was I would read of her struggles with multiple health problems. My amazement at how she could travel from doctor to doctor, going through test after test and still carry on a business on the Internet just drew me in like a moth to the flame. I would sneak into her blog site very late at night and read her thoughts for the day and think to myself...."Isn't this neat? She can get it all out and be ready to start a new day." From stuffed toys to her dads old car, Parkinson's Disease and not, to other diseases no one can pronounce. Then one day she said, "I can't come back here, I don't have Parkinson's" I was crushed. She did comeback and she continued to mentor me on my long journey. How naive I was at that point in life. Denying that depression would ever set in. Denying that anger from constant pain would take over MY life. Little did Rosemary know that every time she came back she spurred me on. Once she referred to herself as a computer geek. I laughed at that statement until I actually learned some of the things she has accomplished. In my small way this morning I would like to send a thank you out to my friend, Dirty Butter. Thank you for the very first time you referred to me as "the one that goes by PokieToo" on your site. May your days continue to be blessed and new medical miracles come your way. I hope you know just how much you mean to so many and especially me....pokie

THIS FEELS SO RIGHT

For days now I have scurried around like a little mouse on a mission, going here and there trying to get everything done for some unknown reason. I feel like I have waited all my life to see the world take this turn. I can feel God smiling. For the first time people around me are openly talking about religion and race. Love and relationships are drifting into those conversations as well. I have talked to so many people in the last two days who spent the Inauguration Day glued to the TV, as I did and cried....all day, but unlike the tears of fear on 9-11, they were tears of joy. I was in Charleston, S.C. when Martin Luther King died and was taken out of town to the islands because I was white and the city was burning. Fear and the associations that had been set in me from birth governed my life at that time and though I never thought about it I was very narrow minded and came by it naturally.. I can also remember campaigning for John Kennedy while only in the fifth grade and a huge button with his picture on it that I wore to school every day..Franklin School, Cape Girardeau, Missouri...Schoolyard Politics. I truly loved JFK an when he was gone a part of me just shut down until Tuesday. I did my job and voted but kept my feelings out of the reach of anyone. No one would ever offer me security and take it away again. Tuesday I felt loved and I loved it. I felt it was once again important that I was a citizen of the U.S.A. I was once again a real American and I had faith and every one was talking about it. God was visibly everywhere. From the cashier at WalMart to the meter reader for the power company, everyone had something to say and it was all filled with hope and enthusiasm. Then as the whole world watched it was announced that Ted Kennedy had suffered another seizure and had been taken to the hospital....The guard had changed for ever! Thank you President Obama and your beautiful family for having a dream and pursuing it. Thank you God for once again taking the lowliest of men and guiding him to lead. Thank you for one more experience in such an experience filled life......Pokie

Here's to Us....

I was drifting through my pictures today and came across this picture of the coffee cup Karen sent several of us back before she retired. We use to get up at four or five California time just so we could clown around in chat before Karen would go to work. We have since realized this deprived us of precious sleep which added to Karens' misery at the time, but boy did we ever have fun in those early morning hours.....We'd meet and once we got there would lift our cups and celebrate a new day. Carefree times were they. Much before news of a Depression or economy crunch. Long before worsening diagnoses for some of us....We were just out there as friends do playing. I have decided not to loose that this year and I do realize it would be ever so easy to let it slip away. We're older and things are harder. We sleep later in the morning and get to gether later on but one thing has not changed...we are friends for life. We choose to celebrate each day and move on. In the past year I have become a new mother to some and a new sister to others. I have become a connection to religion when none seemed available or wanted. I have traveled and hugged some of the most incrediable people ever. There is an awesome feeling in the air in the United States of America right now and I love it. A feeling of hope and promise and may it continue. This is the best country in the world and any thing is possible here. People have come from other land to settle here and made millions and the world was better for it but things are not important and as our economy falters so many friends will be called on to help someone else and I hope you do it with a happy heart. It takes only a minute each day to bring a smile to someones face or to give a hug to someone who has had none for for too long. With the beginning of a new year and a new administration, letssquare our shoulders off and decide to get things straightened out. One on one we can change for the better, we can find a cure, we can make America safe for all. Will we ever get back to the safety and peace of the fiftys? Maybe not...but it is a beautiful dream is it not. If we could just be able to stop the killings arond the world and get along.....How can we stop fighting over seas when we can no longer sit on our front porch without fear of being part of a drive by shooting. In the early ninties there was something called honor among thieves. Now there are no bosses and the idea is.... you answer to no one. Not so, my friends. You will always be accountable to your Higher Being no matter who he may be. Sooner or later the time will come to settle the score card and there are so many young who are coming or will come up short on their cards. I hope my generation does not give up being mentors for the young in the coming year. Tthough it is a hard road to walk on and not to be traveled without a good heart. Tthe youth of today are really going to need us old(????) to survive what is lurking out there though they will never admit it.....so as I ramble on trying to reach an indeterminate end I will pray for peace for my grandkids and an increasing knowledge that the very small things in life are the most important and the treasure of inheritance may be a quiet monment or a good story from another time. With that thought I raise my coffee cup and wish you peace and improved health in this new beginning...love pokie

Friends on all Sides

Any time you are dealing with the mind there is a certain amount of weirdness associated from all sides. People on the outside say, "Well she's a little crazy" and at times you may say to yourself "Am I crazy or what?" but trust me there is still allot of sane in these Parkinson minds that are traveling around this country. Our bodies may be tired and misshapen but the light is still very much on in the house. Today I was on the phone most of the day and sat down for supper with a definite smile on my face thinking how far we have come in trying to find a cure. True I have only been out there looking for a short time.....six months to a year, but so much has happened in that time. The places I have been and the people I have met leave me with such a feeling of hope for our future as healthier patients that were once categorized and forgotten. New exercise programs are being developed as we speak to help Parkinson's patients live a better life and keep moving. My weight plays a factor in my Parkinson's or Parkinson's plays a factor in my weight. Whatever, this will be the year to turn this around if at all possible. I am lucky in this respect for having a fiend in David Zid, author and personal trainer. David's home base is Columbus, Ohio and first we met indirectly through his dad in Atlanta, Georgia at the YOPN Convention. Several months later I ran into David and family again in Indianapolis, Indiana at a Parkinson Symposium and I was just mesmerized by his teaching technique. We hugged at this meeting and I promised David to address the weight issue and things would be better when next we met. Now several months later again and David and I are setting up a symposium of our own in of all places Vandalia, Illinois in May. Hopefully uniting our area in Parkinson care and possibilities for treatment. So many advances have been made that are not filtering back to the patients.....The LSVT program makes a huge difference and yet there are speech therapist who know nothing of the program. With this disease you MUST be your own caregiver, your own advocate and sometimes your own physician. You must be constantly on the lookout for something new or old that makes the day a little better. Be it a warm blanket or a phone call from across the United States, everyday must hold a new" something" that helps. So many of us with this disease have no family or friend to talk to and without a friend the pain just grows and grows until it is unbearable. I am so fortunate to have found Patientslikeme.com last October while looking for my email. Now over a year later it is very much my home away from home and believe me has helped me in untold ways to go to battle and win in many respects. Often the meds don't work and you can't get through to the doctor and you start to feel no one really cares, but as close as a post away, there is usually someone who is feeling just as bad or has been there and can help you out. A new slant to "One on One" or "Be a Friend, Make a Friend" In the coming year I hope to share my friends and family with each of you so that you too may benefit from them as I have. David and I will continue on our path and I am sure my life will forever be changed by our chance meeting. After two very long years in silence, my family is coming to the foreground to help in my crusade. I can not tell you how proud this makes me. If they could be at the Walk in April my life would be complete but if they can't just knowing they are watching will be great too. And last but not least, To Susan, and Jo Ann and Paula......WoW

THE GOAT LADY

This time of year I am constantly searching: searching for my glasses, notes I wrote on the back of an envelope, numbers I just knew I could remember and faces that drift in and out of my memory. I have to have my house in order, so to say, when the snow really starts to fly. I remind myself of a wild animal in that respect...always stocking in for the unexpected. The unexpected has never been to far away from me, yet in the very worst of times I have always been protected....I think this poem might describe why....

Learn to Recognize a Blessing While it's very difficult for mankind to understand GODS INTENTIONS AND HIS PURPOSE, and the WORKINGS OF HIS HAND. if we observe the miracles that happen every day, We cannot help but be convince that in HIS WONDROUS WAY GOD makes what seemed unbearable and painful and distressing Easily acceptable when we view it as a blessing...

by Helen Steiner Rice

Were it not for this obsession I have to clean and organize, this little, very important book, would have been forgotten in my over stuffed mind. THE GOAT LADY by Jane Bregoli. This is a quote

"Many years ago I became ill with arthritis," she said quietly. My bones ached so much that I could hardly walk. I had to quit my job. There was no medicine to help me, but the doctor suggested i try drinking goat's milk. So I bought my first goat and called her Girl. I could barely walk to the barn. My hands hurt so much when i tried to milk her that I cried. Girl turned around and licked the tears off my face because she knew I was suffering." the story is short but what a dedication to Noelie Lemire Houle, who was born in 1899 in Quebec, Canada

Noelie gave her extra goat kids to the Heifer Project International, a non profit organization. Since 1944 the Heifer Project has helped More than 5 million families in approximately 125 countries move toward self reliance through the gift of livestock and training. You can learn more about their work at www.heifer.org.

EVERYDAY IS SUCH A BLESSING TO ME.......THANK YOU...pokie

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

Thank you Dear Jesus......

Thank you dear Jesus for this day I pray with the gifts of food and clothing and a place for my daily rest. Thank you for giving the year that has just past, so filled with good memories of friends that I have. Thank you for friendships that have formed on all sides. Thank you for my walking, no matter how crude, you stayed beside me and we got through.For sunshine and fresh air so crisp and so clean.I thank you sweet Jesus for this day I pray.So thankful and I am for the gift of new life. For Ayden, (Little Jesus) who was sent to show the way. His smile and his laughter and all his sweet ways, that calm us and remind us of the mission we have.On this day of Thanksgiving in this wonderful land, I thank you sweet Jesus for making me part of the plan. You gave me new projects to lead me from the pain. Each day has been a challenge a mountain to climb. When I think I can no longer respond, you gently remind me that my day has not come. A verse or a penny somewhere do I find and angels surround me and no longer do I wine. Sometimes I write poems and sometimes some verse but today I'll just leave this quite in the reverse.....so you can just ramble and pick as you will from my Thanksgiving thoughts for this Beautiful Day.

Monday Morning Ramblings

It seems ever apparent, as time moves us on, that so many things cause our world to take shape and be misshapen. This morning I sit here trying with all my might to get my left hand to cooperate and let me type. It curls and it freezes, all terms a "Parkie" might know. It's my left arm I do battle with and thank God for that, because you see I'm right handed and really that is the only really functional part of me left. Parkinson's is a funny disease and it likes to play around. Some day you would barely know something was so wrong and then there are days like today...I take them one and all and know that my Journey has all been Googled for me many centuries before. Some mornings I lay tossing and turning in bed until I finally get up and grab my coffee and off I go to the computer as of possessed. As I start to type all the pain goes away and the answers and some questions form for a new day. This morning this small poem came from nowhere so I copied it down and checked my email.

Tell me sweet Jesus, give me a clue. How do I be such a leader of few? Give me direction as I stumble along, trying to save and then moving on. Questions and Questions come from all sides and so few answers do I find. . So many needles in such huge haystacks, Tell me sweet Jesus, tell me please do Are the answers still out there? For the wanderings of so few. pokie 11/2008

So now on my second cup of coffee and well on my way...I'm ready to square off and face my new day. I can only hope that some of my tasks don't include running and jumping. For those are two things my body refuses to address no matter what shape I get up in. Well leave you with this rambling and wish you a good day on my Journey to 2009....

such special times

From October to April last year and this I posted on Patientslikeme.com hourly or daily, whichever came first, but in that span of time little did I know the friendships that were to be formed for me. I watched these ladies from a far and read everything they posted and admired them so. Following those days so many things came into play....the Unity Walk, Nicole had Dbs, and I found out what great poetry and writings Marian and Karen could produce. I met Marla at the Unity Walk as well as Tom and Dixie and the rest is history. We are watched from afar and I'm sure one would wonder at what an odd combination we make but our feelings run very deep and we are very protective of each other....A closer bond I have never felt with anyone and take that and multiply once again for each of them. I flew out to meet Nicole , Karen and Marian in October and each meeting was as before....as if we had always know each other. The coffee cup , above, was a symbol of such a playful time in our history. We use to hang out on Chatzy in the early morning and pretend we were in a coffee shop for morning coffee...hence "Coffee With Pokie". Karen sent us all a cup that to this day sits next to my computer. We would all get signed in and get our drinks and raise our cups in unison to start our day. I miss those days but I understand their passing. We were kids at play then. Skipping down the lane taking each day at a time and holding each others hand. Then all of a sudden Truth stepped into our little fun house and nothing has been the same except our undying love for each other. Karen's diagnoses of MSA and the sudden noticing of our friendships brought the world and all it's horrible things to that coffee shop and it slowly faded away. God says you should not put great stock in your possessions but that coffee cup could just as well have been made of gold. Inside it says"It's your Day"..... This morning I raise my cup once more to you girls...the members of the coffee club..Here's to you "It's Your Day"....love pokie

'TOGETHER IN STRENGTH, FORWARD IN HOPE"

It's a new day in the neighborhood and I sure hope our day is here to shine . Parkinsons Disease needs all the help we can get to find this cure and save my grandkids from this disease. My family has that dominate gene. My grandmother has Alzheimers on my Dads side as well as my grandfather on my mothers side. My grandfathers brother had Eplipsy and my dad had Myacinia Gravis. My mom now has Alzheimers and I have Parkinsons. We have four generations living now and you would think someone would want to study our family history with atleast blood work. Ah but alas, time moves on and no one appears to be interested. I leave Tuesday for the Parkinson's Clinic of the Ozarks in Springfield, Missouri for a full day of testing and hope to end the day with alot of answers. I have been making a list of questions not only for me but one of my friends, Karen, who seems to present alot like me.....so possibly she doesn't have MSA or I do? I am rapidly losing all faith in the medical community to diagnose us "Parkies" and effectively treat us. So much of our ground work has to be done by us and I worry when I can no longer research who will. Oh, well that is another time and another place and I try to stay in the present. God please bless Karen and I and all our friends and help us to remember "TOGETHER IN STRENGTH, FORWARD IN HOPE"