Never Give Up......

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Well here I am and though I may consolidate all my writings into one site , I am here now and that is all that is important. I have taken time to visit with Friends and watch the Cardinal Baseball Game, read several books and sleep way too much. I needed to rest for one thing but most of all I needed to be sure where my PASSION is and how to pursue it. My passion is writing and in the past three years I have wrote stacks of sometimes meaningless and sometimes meaningful pieces. I turned articles out faithfully every night in three locations and loved it. Friends have advised me that this is overkill and I should cut back or put all the articles in one place. This is hard to do because "Coffee With Pokie" has always been for fun and"Today With Pokie" has been from my heart, where "Pokie Journey" always seemed more commercial. Blending may be hard and maybe I won't but changes are in the air for all the things I have going on right now. I can say I will be more careful with my health this time or my family will not let me continue and that would be devastating to me....Bear with me in my rebirth in the coming months and let me know what you think.......love pokie

Scared Me To Death....

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I have so much I want to say and no way can I get it all out. In the past two months I have been lead to believe I might have had a heart attack and another was just around the corner, I was a diabetic, and probably had cervical cancer. All of this false hood resulted in multiple pre-op tests and one gynecologist said he would not touch me with a ten foot pole.....and I should only have surgery in a center of excellence with a trauma room. Now two months later and four specialists later and four two hour all day trips to Springfield, Illinois and I am now told my heart is fine with blood pressure of 120/70. Yes I am overweight and 63{old} but so far no cancer and for sure no D/C which they were" preoping "me for in the first place.

Could a couple of small town doctors saw a good set of insurances(medicare and Cigna) and decided to put the worst on the results and see if anyone bought it? Check these out
one chest Xray
one lateral xray
one MRI lower lumbar
blood full blood work
one sonogram external
one sonogram internal
one set of bending Xrays
3 pelvic exams
and these specialists, spinal surgeon, 3 gynecologists, heart surgeon, general practitioner and a movement disorder specialist.

I went to the last gynecologist Monday with two sacks of med one a gallon ziploc with meds I use to take and a pint ziploc with what I take now after two months of weening myself of of all my PD meds.....He actually is the second doctor to applaud me for doing this ...I WAS EXTREMELY OVER MEDICATED and exhausted.....

This has been a wild two months and though it is not over yet...it almost is and I shudder to think I could have had a D/C for nothing......I would truthfully say the system let me down....love pokie too

Hanging Out With the Right Crowd

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This is Abe and I from the recent Neurological Disorders Conference in Vandalia, Illinois.....

Always Trying to Catch Up

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I've been away for awhile but never a day went by without thoughts of something I needed to write. I keep a notebook by my bed and often just jot down a thought or line to a poem and roll over and go back to sleep. By morning the thought would have disappeared into the sunrise and even with that note I sometimes have lost the thought all together. My Parkinson's disease has decided to make it's self known to me and the world and for the last two weeks I have traveled from doctor to doctor trying to get half way fixed or medicated. We will see this week what will happen and where this is leading. But never fear there is no end to my fighting PD with all I have and none of this would be possible without my friends from Patientslikeme.com.....my home away from home.

Now let me tell you what our beautiful guilt is doing.....she is resting while everyone who did a square is sending in a story about their square. I have received many stories and they will amaze you someday. The love sewn into each square just gives it life. I received pictures yesterday from the 2009 Parkinson's Unity Walk of our team Team PLM which netted $13,694.85 in donations this year....every penny of which goes to research. She has also been entered in this years Parkinson's Disease Foundation Creativity Contest. When she starts traveling again, she will really travel for the world to see just how productive PD patients really are. Yes she is indeed Beautiful. love pokie

YouTube - PatientsLikeMePD's Channel

YouTube - PatientsLikeMePD's Channel

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Parkinson's is One Crazy Disease

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This Parkinson's Disease really keeps one on their toes if you have any hope of keeping up with it. Everyday is a whole new ball game but their are no time outs to regroup. Every inning is intense and suspense activated. If Joe Parker is the Pitcher, he's the best the coach can bring in. I pray for a slow ball and he pitches a curve. I pray just to hit the ball and maybe make it to first base. He pitches that curve, I strike and I'm out for that inning. Now if I am a good player, I square off my shoulders and walk proudly away and when my next time at bat comes up, I give him my evil face and hope it will scare him. I keep my Parkinson's eye on him and my good eye on God and swing with everything I have. I'm not quite a Albert P but somewhere in my brain I think I might be if given a chance and me and the ball connect. I cannot run but I head for first and they fumble the ball somewhere in left field. With my head down and one arm swinging, I am repeating, "I think I can. I thin k I can.".....Hell has no fury like a sixty two year old grandma on a mission and I make it. .......Huffing and puffing the whole way.

As the inning progresses, more of my teammates gain hits and move me around the bases and then up steps "Big Albert" to the plate. All eyes are on Albert and I can not think for the pounding in my ears. It's that old curve ball BUT Albert gones for it and connects and it's gone!.....Joe Parker watches as I stumble across home base with Albert in close pursuit yelling "Go Parkinson's....Go for the Cure" and we win in the ninth two to nothing......What a dream ....huh? love Pokie

Finally a Light

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Finally this week after three years, I think I have coordinated my health care in all phases. I have had to have so many specialists with all my malfunctions.....Neurologist, orthopedic surgeon, rheumatologist, and general practitioner. Often egos interfered with who would do what and then nothing would get done but this week after three years my neurologist took the big step and we are off in the right direction. I have always thought if all of my doctors would confer with each other I would come out better in the long run. I would get more testing and have a wider array of opinion as to the problem. On a three way connection this week they talked about my blood work and MRI's I had had and whether or not I had a major infection going on....My MRI's were showing spinal shirkage but my Neuro stepped in and said "NO Surgery" and got with my GP and ask to go ahead on a ultra sound to track the infection. Meanwhile my Rhuematologist was right in there tracking my blood test and monitoring Diabetic activity and Potassium levels....potassium too low and sugar too high.
Also I had my pharmacy try to charge me $444.00 for one prescription and had I paid it , it would have been gone....I refused and called my insurance and got it for $22.00....Also a $145.00 doctor bill was not billed through medicare first and denied.....Don't just step up and pay these bills because it will be your loss....and every penny is important right now.
Best of luck with your doctors and follow your heart as to what you think is right . Don't be afraid to change doctors if you don't get results.....I am very pleased with my team...love pokie

Getting Old and Laughing at Myself

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This getting old is a tricky thing. And when do you go through it? When your too old. Too old to finish a thought without getting side tracked. Too old to see the seriousness of something you think is funny. Too old to do what your kids tell you to do without a comment that only gets you in more trouble. I guess it's a blessing that God saves Old for last...so we can savor the moment and even though we may be the only one enjoying the humor of it...we chuckle to ourselves and walk away while someone, somewhere is shaking their heads in disbelief. Blundering through life is one thing and then you realize that education is drastically needed to complete the goal. With three years of college behind me in the Young phase of my life, I think I could really enjoy and learn something now. College was actually a social event in our town. It was something everyone did after high school but not much was learned....Now in he quiet of my Old phase, maybe things would sink in better...I can only hope I have enough active brain cells to understand. If I don't, I'll just have something else to laugh about.....lol love pokie

Thunder and Rain....

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Last week , when the first storm hit south of us, I laid in bed and thought about the thunder. When traveling back from Washington, D.C., we flew thought a distant thunder storm and it was the first time I had seen lightning bounce from cloud to cloud. In the dark it was an amazing sight as are all of God's viewings. Of course I could hear no thunder and soon we were on the ground and life went on. But the other morning I remember thinking, "This is thunder that scares dogs and kids and grandmothers." It was not your usual rumble but a loud band that just kept on rumbling like marching soldiers traveling down a dirt road...line after line, until you could see them no more. Early this morning my chocolate lab just opened the door and came in so I knew this storm would be a bad one. Even now as I type, he is lying right next to my foot. Poor soul, as a baby he was forced to live in a hog crate, outside in storms until rescued and I got him, and to this day, if it storms he has to be in and goes to the bathroom and sleeps. Somehow in his mind he has found his own pen and he feels safe there. Not so different from Parkinson's patients tending to make their safe place around them as time gets worse. Often times we make excuses to keep from going out. If we don't go out we only have to deal with ourselves and no one can hurt us....just beware of this fallacy. It will pull you down , especially now. Look at the 64 year old man last night who entered a weight show and won after suffering a heart attack right off the bat, and the lady from Scotland who sang with angels and no one ever listened. How about the goat farmer and her travels of the past year? Venture out today, after the storm. Don't be afraid of the thunder...sunshine will follow. love pokie

The Conference Was a Success

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Where I able to give a gift to every Parkinson patient, I would give a visit from these four people, David Zid, Jackie Russell, Debbie Guyer, and Dr.Max Benzaquen. these four people made our conference and then some. David and Jackie Pulled the group together in a circle and started very simple exercises aimed at the novice. As simple a movement as putting you hands together in a praying position in front of you and pushing can help someone with Parkinson's......or propping your feet up on a hassock for fifteen minutes. Tiny little things can make all the difference in our day. Have you ever considered which leg you step into the bath tub with? Try standing on your Parkinson leg(the side the symptoms present). It usually is pretty good at freezing and you can lift the other leg farther and higher. Hold on to your security bars and try it. It works for me. Baths or now impossible for me and oh, how I miss this....With two replaced knees and shrinking vertebra it is just out of the question...Next, I guess is a sit down tub.
One of the attendees has had Parkinson's for thirty years and spends most his time in a wheelchair. He has always been my idol for his sheer style in which he handles the disease. In my book, he and his wife are a class act in all ways. With David in front and Jackie behind, they had Bob out of the wheelchair and standing and smiling. David and Jackie just radiate love and kindness on all sides....I am so blessed to count them as my friends.
Then come the St. Louis crowd. Dr Max could have been very standoffish to the audience, but instead went person to person talking to them about Parkinson's and their treatments and doctors.....At one point he touched Bob's chest and said"Ah, very good!" ". You had a very good Doctor" He has three hundred patients in Chesterfield, Missouri.
Debbie was an integral part to the whole program. The information she provided before hand was worth everything to me. and her program on LSVT was so warm and aided by an actually participant in the audience. The whole day was friendly and comfortable for all and the actual community united with the Parkinson's Community for advancement of both. Thank-you all. The word is out that there will be a second annual except not wait a year and go for the fall....Love Pokie

AH, TIME TO REST

Central Park April 26,2009 15th Annual Parkinson's Unity Walk

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Yes, we got back on Monday, almost 24 hours later than we had expected. My daughter and I couldn't get a flight together even though we were leaving New York City about the same time and as the day moved on I was in St. Louis by five and she was in Baltimore and then she was in Cleveland and at eight the next morning she was in Chicago.......trying desperately to get to St. Louis and me. The Airport Marriott in St. Louis allowed me the comfort of their space for the night and at 10:30 the next morning in the door she came. In two hours we were home and without even unpacking, I started on the conference scheduled for Saturday morning here in town. I had no idea just how tired I would be Sunday morning....and everything was over that had been going on for a year. I just sat in the living room chair Sunday and stared blankly at the TV, nodding out for a while and back to staring at the TV.
Ah, but now it is Tuesday and I have recovered. I have my meds straightened out and ready to go back to being a good Parkinson's Patient who drinks plenty of water and takes his meds on time and sleeps when he needs rest. I'm in to mailing photos of the Unity Quilt to all who made squares and had anything to do with it. She has been "oohed and aah ed" from every angle. Her story has many sides and my wish that everyone who made a square gets his story told. It should be an interesting year for sure.....love pokie

The Answer to all My Prayers

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If there is one thing Parkinson's patients dream of, it is the acceptance of their family as having a debilitating disease but still being a useful part of society. So many times the family wants to keep you as you have always been, just a mom or dad that's getting old. Parkinson's takes so many things away from us and the first is not our movement it is often our families. In their denial of the severity of our illness they leave us not only trying to survive but trying to make a new place for ourselves. In my instance, when Parkinson's came knocking at my door, I was , I thought, a quite happy senior farmer, retired and happy to live out my life without causing too many problems for anyone. I have never been one to do things the easy way. I have grown up and raised a family for the most part on my own in very humble surroundings. I never worried if we would all make it through, I BELIEVED. Following that same pattern, when Parkinson's came I set out to understand the disease and help those I found with it. Little did I know the road I was on. Now three years later and many, many miles traveled, I can happily say my family is proud of my accomplishments and the help and awareness I have brought to the community.
The hardest one to bring to my side was my oldest daughter who would have had me fade quietly into the background with no uproar or public view. She is my type A child, as I say and very much the leader of the pack. I have spent my whole life trying to make her very proud of me...For some reason I always felt slack in this field though I always knew how much she loved me. When Parkinson's came along, I felt it was the last endurable humiliation for her. In the past three years she has been there for me but really had no idea of the depth of my need to pursue a new life......a very public life.
I have had the feeling that if we showed the world our pain with Parkinson's they would help cure us. For the most part, PD patients are isolated from society and there fore forgotten. I sat out to be seen. I went from not knowing how to turn on my computer to running three blogs. I had never traveled by air and now do it monthly. I have found I have a voice and this weekend , at the 2009 Parkinson's Unity Walk in NYC my daughter saw what two years of daily effort can produce. I was surrounded by friends from all over the world. We hugged and cried as true friends do. I was interviewed and photographed from all sides. With or without the quilt Parkinson's was important and the world was watching. When the quilt made her coming out, she stole the show as I knew she would.
Not to many times in your life time do all your dreams come true, but I can say mine have. I told my daughter "I just wanted you to be proud of me" and she said, "Mom, I am so proud of you". and with that, the fact that I could only walk one mile this year and had walked two last year, was alright and I had once again held Parkinson's at bay.
What will I do in 2010 to fight? I will do more of what I have done this year, but in an even more intense way. I have always said if I didn't believe in this I would not be doing it. I BELIEVE A CURE IS CLOSE!....and we all need to stand up and be counted. Thank you Heidi for being a great daughter to a sometime difficult mom...love pokie

"SUCH A DAY"

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"Such a day" today and it was made even more fantastic because Vandalia, Illinois was visited by the "notorious" quilt angels who we all know have more money than they know what to do with and have very sneaky ways about them. My photographer (meagan) and I had an agreement on pictures of the Unity Quilt, with everyone involved getting a copy and when I was talking to Ladyhawk (Marla), she ask who was doing it and I made up a name knowing if she found out who was doing it she would pay for it. I thought I had handled it well and surely she would never find her. Well you don't mess with quilt angels!They travel in the "Boondocks" in search of things to do that make people cry....I had to be on the radio at 8AM this morning and Meagan was there in a Chamber of Commerce meeting.....just smiling!!!!! Never once did she let on that she had been tracked down and the bill was paid. When I arrived at her shop later in the day, she was all a smile and having "such a day" and she said to pass the word on to the quilt angels how much she enjoyed their visit and that she would stay in touch.....She is a wonderful, young photographer just getting started in hard times and these quilt angels made both her day and mine...I love you all so...POKIE

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ISN'T SHE BEAUTIFUL?

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The last four days have been a world wind of events that would defy only the hardy. Wednesday I will leave with the Parkinson's Unity Quilt in hand for New York City for my second Unity Walk. It seems impossible that a year has passed. Parkinson's Disease and I have walked, stumbled and cried our way down many a road. I have traveled across the United states in all directions listening to the very newest treatments from the foremost clinics and doctors. I have been to some of the best clinics and hospitals that Parkinson's has to offer. A year ago I would have had trouble sending a chain letter to twelve friends because first I would not have known twelve people who could use the Internet and second I would not have known how to attach the chain letter. Now my address book goes on and on. Friday the quilt and I will venture to the TODAY show in hopes of being interviewed for Parkinson's. Saturday my team Pateintslikeme will be interviewed for the web cast. Our team is running in the top ten for donations. Then yesterday Dr. Geoff Rutledge contacted me from Wellsphere and invited me to guest blogger on his website http://Healthbloggers.com. Now really....a year ago I was a sixty two year old goat farmer in the middle of Illinois who was having trouble walking and hurt all over.

I can only say when God decides to change your life and take you on a ride, he does it first class. I have been in such severe pain yet have never had one day in three hundred and sixty five that I have not fought this disease with all I have mentally and physically. There is so much more to PD than the meds. The depression is constantly waiting to get a foothold and drag us down into a bottomless hole. The meds we have to take make us sick and interact with each other, leaving us fatigued and grouchy and feeling useless to ourselves and the outside world. We are not useless and we are not a someone in the corner of the nursing home left to sleep all day. Just as our quilt shows, we are vibrant outgoing people with a story to tell and a smile to send....and willing to hug if you'll come near...No two of us is alike as is our disease and the way it ravages us. A collection of odd shapes and sizes in every color that look by their selves, singled out, like a miss fit.....BUT PUT THEM TOGETHER and look at them shine....Unity just waiting for the world to take notice at how unique and special we are. more to come .... love pokie

ISN'T SHE BEAUTIFUL?

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History is Being Made.....

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Never regret a ride on a star,
A dream, or a hope that was aimed too far,
That wonderful castle you built in the air,
Though it tumbled and left but a memory there.
For dreams that go drifting
And hopes that are high...
A ride on a star through a silvery sky...
These are the wonderful, magical things,
These are the glorious, gossamer wings
that carry us up where the angels play,
And Heaven is ours...though it is only a day;
But one day in Heaven has infinite worth
In brightening the practical pathways of earth. Helen L. Marshall (No Regrets)

This past weekend was something to behold. I celebrated my 62 birthday among many of my closest friends with Parkinson's Disease. Some I had only just met and some I had only met on the Internet. Some I cannot recall their names but their faces and laughter I will remember always. One of the most amazing things was the warmth with which we were greeted on Capitol Hill and the genuine compassion and concern that was shown to us one and all. I visited my representatives and congressmen from Illinois....thanking them for their support in the past and asking for continued support in the upcoming Congress....Caucus signatures were ask for and gotten and our view points were listened to with heart. Thank you so much for letting me be a part of history as a cure for Parkinson's comes closer and closer in my life time.

GRAB YOUR HATS ...HERE WE GO

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Little did I think a year ago all of this could possibly be going on in the world at one time. I can only say God is definitely ready for a change. The economy crashing before our eyes...unemployment everywhere. I had to go to St. Louis, Missouri last Friday and drove down the major factory grouping on Limburgh Blvd. This is where plants like Boeing and such are located. Plant after plant with half empty lots are closed down all together....car dealerships just three months ago full now empty or closed. It was to say the least sobering. Too many people for me to fathom suffering in one way or another. So much sadness everywhere.

Out of all this this week has come huge shooting stars...The signing of the stem cell research bill, Monday has just took off. I had an email from a new friend who is leaving for possibly on of the fist stem cell transplants from a soon to be arriving grandchild.....Now just how awesome is that. The first of this week this lady was at her wits end and close to suicide. 54 years old and on a huge amount of cross matched meds....now look !!!!! On her way to a possible cure. I am so thrilled to be a part of this history that will change man kind.

Tomorrow I will leave for Washington, D.C. to lobby Congress but this is my plan while I am traveling. Get a form letter composed to be sent out to all the institutions testing cell transplant, offering my family history and the fact that we have four generations living and all have some neurological disorder plus one generation passed that exhibited such disorders. I can only say now, the phones are hopping right now with people calling for research entry.....get in there let them know where you are....fax , send a letter call......it's important....love pokie

Saving the Economy?

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I have been kind of distant in the past couple of weeks. I have been battling Parkinson's Disease with all I have and also decided that it was time to outfit my living quarters for my inabilities and MY comfort. Last Thursday I went to town on a mission. Since I was going to Washington D.C. in two weeks to lobby Congress, I decided that it made sense for me to get a Blackberry so all the things I needed were in one place ....computer, phone, camera and whatever I just had to figure out how to use it. Now it is Friday, the following week and I am getting my contacts in and have successfully made some calls so I guess I am not too old for this. While I was in there I also bought a couch and chair and ottoman and three tables.....Why? Because the couch I had was twenty years old and everything was mismatched and I figured if I was going through a depression I was going to be comfortable doing it. In hindsight this may have been kind of a "blond thing" I would say I am padding my nest for bad times. I can only tell you that when I sit in my new chair and fall asleep......I am very happy and comfortable and I am so glad I splurged on me and only me....maybe it was about time.

A friend came by yesterday from Wyoming in a huge mobile home and I think I'm in love with their home on the road. Though they only use it for vacations I could be quite comfortable in these surroundings. No taxes, just pay as you go and enjoy...dream on girlfriend......I would never be home then.....just load up mom and go.....pleasant dreams Pokie

Happy Valentine's Day

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I guess I must be getting old and sentimental, I really hope so. There could be worse I think. I could be old and cranky or young and ANYTHING! Today instead of turning to chocolate, I'll turn to my very favorite poem to tell everyone how I feel:

BEYOND MEASURE

How can one measure friendship...
The firm, warm clasp of a hand,
The comfort found in the welcome sound
Of the words, "I understand"?

How can one measure courage...
The strength we find to fight,
To suffer life's anxieties,
To stand up for the right?

How can one measure beauty, hope,
Or happiness, or love?
What man made measure can encompass
Faith in God above?

So much of life...the best of life....
The things we truly treasure,
Are these, the gifts of boundless depth
Beyond all earthly measure.

H.L. MARSHALL