This is my viewpoint on fighting not only Parkinson's Disease but Acute Arthritis and Epilepsy with My Lord on one side and Patientslikeme.com on the other....with a sense of fun and friendship all around.....
Sincerely, Pokie
Check this out and be prepared to start out crying and end up cheering for my new idol in this never ending battle against Parkinson's, arthritis and everything else that just keeps me from walking and doing what I really want to do. Look at that look on Larry's face! I have felt that look. I have seen the world through those eyes......and I am and continue to fight for life as I love it. No I am not too crippled. No I am not too old and No my life is not all about PD but it is about mobility in any form and through that mobility...... TOUCHING......always love Pokie www.ridewithlarry movie.com-is the link and a couple of articles to check out are: 1http://www.sandiago.com/arts/san-diago-filmmaker-focuses-on-parkinson-s-disease 2.http://www.nhregister.com/articles/2011//01/09news/metro/doc4d2936D585aaf387934027.txt?viewmode=full story.
It's five am in Illinois and we have extreme weather conditions all around. Icing everywhere does not encourage me to get real excited about venturing outside to get some form of exercise...This is what I have been working on while not blogging daily. November nineteenth I had my right hip replaced and with that decided to just reinvent my whole life. I now exercise an hour or more daily. I have lost 34 pounds since August 1st and this is what I am trying. I joined the Y and go in and walk the gym in laps. One lap is one/sixteenth of a mile. As of yesterday, I am up to a half mile, 8 laps.....four without a walker and four with. I can now accomplish this in 24 minutes. Not lightening but gets the heart rate up and is building the strength in my legs AND MIND. I found out that after the surgery, my repaired leg wanted to go big time but my PD leg wanted now to freeze. My leg that was operated on is smaller than the PD one but seems to be much stronger. My main worry now is upper body strength....especially my left (PD) arm. The upper muscle in both arms has excruciating pain most of the time SO I do three sets of twelve, arm pulls to the front with a Pilate's stretch cord, three sets of twelve lying in bed and extending my arms straight over me and making large circles to small circles, leg lifts high to just off of the bed and then back up. I have never been an exerciser and this is not fun but I am starting to see the rewards and that is fun. Second is dry skin......My meds seem to drain every ounce of moisture out of my body so "Lubriderm Lotion" constantly and lots of liquid water or green tea. I force myself daily to do my hair and makeup....why, because, I have found if I don't force ALL of this I will not do it and I will die a slow death and not even know it. In with all this I am working on a 1000 piece puzzle of down town New York City(for the brain), read my Bible and several books loaned me by a special friend and take care of my 87 year old mom with Alzheimer's. None of this would be possible were it not for the total support of a long time love, who constantly tells me my worth to (if no one else) him. He sets my goals on very high shelves and encourages me to reach ever higher. What a difference he has made in my life at 63.The point behind all this is.....If I can do this, so can you. A chronic disease is a killer in so many ways. It not only kills your body but your brain while it runs all those around you away in fear. Those who are once friends, tend to pity you and you let them. This causes you to start a never ending road that takes you nowhere but to "Waste Land U.S.A." Please, no matter what chronic disease you are battling, do one thing for YOUR improvement today. Then tomorrow try two things. Life at this end of the scale maybe short but it need not be unproductive. Take five minutes and laugh, if at no one else, yourself and know I am thinking of each and everyone of you at this Christmas Season with love in my heart. Love Pokie
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
I have definitely been slacking on my writing, lately. At least public writing....... I am constantly writing poetry and prose on slips of paper and sticking them in books or my purse and pull them out much later to review and add to. In the past five years I have accumulated many mountains of the written word...some mine(most) and some from other people. With Parkinson's I have trouble retaining what I read , but have found if I write it down it sticks better, hence stacks of unfiled thoughts and dreams. I still wake up in the middle of the night with a verse or song going through my brain, begging for attention, at which time I climb out of bed and usually, spend all night perfecting it to my taste. Last night or better yet, this morning I woke up in prayer, not once but twice. This is a first for me. My prayer was in thanks for a special relationship which is forming. I can only say there is a lot to be said for hanging on just a little longer when you think there is no more to live for. As optimistic as I seem, recently I had all the pain and negativity I could stand and was just tired. Tired of fighting to live, tired of being surrounded by negative thoughts and tired of trying to make good of a very hard road to travel by ones self. I was truly making my bucket list and hoping to be spared continuing strife on my journeys to the after life. I pulled together all the courage I could and ventured out after months of home bound living and you know what? God rewarded my efforts once again. I know in times of upheaval over religion and faith, there is a lot of disbelief, but I am solid in my faith! As hard as my times get I have never decided to opt out and end it....I just blend back into the woodwork and become complacent. GOD SAID NO! It isn't time yet and brought me a whole new fantastic life like none I have ever known.......If I had a way I would bottle this and send it to each of my friends and acquaintances in the belief that their life would be saved too. I am no spring chick and I move like I'm ninety sometimes, but I know I am loved through and through and someone cares, just about me. In that thought I was made to understand that when you receive you pay back. Never take anything you cannot repay. .....and if the pleasure was GREAT pay back in kind and it keeps on coming.....I had no idea what I was missing until God took me and showed me......and so at three this morning before time slipped any further away, I was giving thanks in my dreams. I will not share my veery personal prayer but I am sure God heard me and listened....Love Pokie
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
Recently someone very close to me, got all of my attention when he said, "You are not defined by Parkinson's" I really had not given it any thought before that. I was having a particularly bad day as we often do ...On days and OFF days...all the time, but this one was the worst possible. I didn't feel good and pain was high, I was having huge amounts of trouble standing and walking and I had a meeting I needed to drive to St.Louis for that afternoon. My phones were giving me a fit, and all my reception on this hill of granite was gone.....even my land line was not charging......so about one in the afternoon I said to my friend, "I'm not going to go. " It would have been very easy to have just gone back to bed and sletp the rest of the day away. His statement to me was one I shall always carry with me and cherish. "You are not defined by Parkinson's Disease. You are a beautiful woman, with or without Parkinson's. Whether you know it or not, I depend on you for my strength.....DON'T LET ME DOWN!" Needless to say, I went to the meeting and had a great time and when I got home a message was waiting for me. " You never know when someone else is depending on you for their strength. You wouldn't want to let them down"......No I do not. I am so blessed to have so many friends and in particular one who can put me back on the right path when I stray and feel so sorry for myself...........................love ya always Pokie
Just when it looked like we might be making some headway, THIS. Monday a federal judge issued a temporary injunction halting federal funding for human embryonic stem cell research.What is wrong with these people? In one fatal swoop any new grants are on hold. To put it in very real terms, the National Institutes of Health(NIH) stated yesterday that 50 grants up for peer review were pulled; 12 proposals worth $15-$20 million ready ready fr their annual renewal in September will not be renewed. In addition human embryonic stem cell lines ready to be added to the registry(the listing of eligible stem cell lines) will be placed on hold. We are still waiting for definite guidance from NIH about how this ruling will affect research already underway using this years money.I am so up[set as are so many more in the Parkinson and Neurological Disorder communities. That is why we simply cannot accept this mandate....Please stay tuned in the coming days and weeks for important updates on this issue and how your voice will play an important role. I hope you as an ordinary patients have a big word in this lease stay abreast of this and let you Congress how upset you are.....Hound your legislator for support. Let's all get out there and push this rec ending
For four years or more, I have been in search of answers to many questions that enter in and out of my life. One of them is when does one become old? While growing up; "old" was my grandparents and the little ladies at church with the heavy nylon stockings which always seemed to sag somewhere and the shriveled up little men who carried gum to entice you into good behavior and light conversation. As I got older; " old" was ladies with too much makeup and too funny a color hair and men wearing bad fitting topees. After sixty; I went into denial and refused to address the subject any longer. I am now sixty three and think of "old" as a hundred and can only hope, if I make it, I do so with company. No one wants to be alone but particularly when your old. Pain seems worse as does thinking. Life is so much easier with a friend.....and life has graced me with many friends and lots of love. Recently my life took another turn and this turn came at a particularly bad time but as it seems, God did not wish me to decide I was done and give up. As I made my Bucket List in preparation for my inevitable demise He intervened, as He always does and sent me down yet another path.....teaching me once again I am not in control and never was . Only my Lord decides when and where and just how happy or unhappy you shall be. I HAVE NOW COME TO THE CONCLUSION THAT"Old" is just a word not to be thought about. Some may be "old " at twenty or maybe born old......I chose to stay forever a kid in my heart and possibly that kid will convince my mind and body that "Old" just doesn't exist.....Love ya always Pokie
God gives us Rainbow Connections, to heed or ignore....Little visions and voices that lead us in one direction or another on any given day. Some listen intently to these voices and others just ignore them and do as they please. What a waste of God's time if one chooses to ignore ans how frustrated he must be getting at our actions. Did someone need a hug today and you passed them by? Did you have extra of anything and not pass it on to someone needing it? Could a nice word have been spoken instead of the rough words that erupted? Did you hold someone down for your own happiness, without remembering that a caged bird does not sing? Why can we not see that our Rainbow Connection is here, now. Our chance to find that pot of gold and make it ever shine for ALL to see. Try it today .....don't make it about money but instead about love. Love your neighbor as you would love yourself.....maybe there is were the problem lies. We cannot love ourselves, so therefore cannot love our neighbor. Somehow we must all make that journey to our "Rainbow Connection", sit quietly and listen to the voices of change......then act on those voices:
"who said that every wish would be heard or answered When wished on a morning star? Someone thought of that and someone believed it and look what it has done so far."
Yes, I am definitely a dreamer and a lover, I'm told, as well. But look around you at the wonderful space we have been given to inhabit? Regardless of what you believe you must realize and be thankful and pay forward or back for the rent you are owing. There are so many ways to shine, today. Take just a moment with that cup of coffee and come up with just one pleasure for Your Higher Being.....lovePokie
For as long as I can remember I have viewed Sunday as God's day....and that always made Sunday so special. The best of all things happened on Sundays. When I was small my grandparents lived two doors down from me and every Sunday they would pick my brother and I up for church which was one of my favorite places to go. My grandparents never missed a Sunday and my grandfather was always well armed with chewing gum for all surrounding kids in hope the chewing would keep them quiet for the duration of the service. After services we would go to my grandmothers for late lunch and a day of just loafing. "Grampa Mac" always said, "God made Sunday for loafing...it was in the Bible." My Sunday is going to be for thanks today. Thanks to a very special friend who has always been there for me throughout my life. In times when we were apart he helped me through troubled times without even knowing it. Just the thought or the memory would spur me on to the next day and everything would be better. Once a very special friend comes into your life, they really never leave. They are there even if it is only in your mind. I am finding in my later years that My Mind and God's Way seem to be all intertwined to where they can not be separated. Well, without rambling on needlessly I would like to dedicate this to my special friend in time and hope your Sunday is filled with peace and contentment.
YOU RAISE ME UP
"When I am down and oh my soul so weary, When troubles come and I my heart it burdened be. Then I sit still and waiting here in silence Till you come and sit awhile with me.
You raise me up, so I can stand on mountains. You raise me up, to walk on stormy seas. I am strong, when I am on our shoulders, You raise me up to more than I can be." Love ya always Pokie
Illinois summers often leave a lot to be desired when it comes to comforts. The heat gets ever higher and the humidity triples the actual figures. It seems no one on the face of this earth could be unhealthy if they lived in Illinois or Missouri because every bad toxin being carried around by that person would surely be sweated out of their system by the extreme conditions. This is were the mind must become very inventive and take the body to a "Paradise Lost." This is something my mind has always been able to do. I am the original dreamer. As a child, I could always play happily with my cat "Double Ugly" and the world just did not exists around me. Little did I know that through out my adult life this has been a God Sent Gift. Four or five years ago, when Parkinson's raised its head and demanded attention, I was able to sent my mind to higher ground for safety. I would dream and still do dream of every possible opportunity I could find to stay active and mobile. At times it was sewing and travel, writing and computer work BUT now many years later I see that no matter how much you love something you have to keep on a strict schedule, try to stay focused and most important KEEP MOVING. I have a tendency to get started at the computer and go all day writing. This in its self very satisfying to me and allows my inner child to play but the exercise gets put off for another day and that day never comes. Since last week I have accumulated enough dreams to last me the rest of my lifetime but I now realize that it's a package deal. Get fit, be healthy, and take those dreams to the max. This Tuesday morning in Illinois, the sun is shining and it is already looking at one hundred at nine in the morning. I have had my fresh peach and a cup of coffee with fresh local honey. Add to that a crunchy peanut butter and honey sandwich on whole wheat bread and I should be ready to dance with the best of them until noon with the help of another fresh peach at about ten......and those dreams and memories dance and play happily throughout my brain. love Pokie
Look at this finished quilt all ready to be shipped to Glasgow, Scotland for it's debut to the World at the Parkinson's Global Congress in the fall.This is the combined effort of 16 Parkinson's patients and Parkinson's friends in different stages of the disease but ready to show their abilities to shine. The Parkinson's disease Foundation has been working diligently since last October to put together a huge display for the Congress called the PDF Quilt Project and these panels were made by only patients and friends who post on Patientslikeme.com. From Kenya to Chili, from East coast , West Coast and Texas and the Midwest, the panels came in. They were made with love and heart felt happiness to be participating in something so important to Parkinson's Awareness. As each panel arrived at my house in Illinois over the months, before I sent them jointly in for quilting, you could feel the personalities and warmth. Like a bunch of kids, each was different and unique. some needed mending, and some were not square, some needed backing to make them stronger. some drew a picture and some told a story and some just begged you to touch and get to know them.
By the time the day came to call FedEx and package all sixteen 2 foot x 2 foot panels for shipping, I handled each one it seemed a hundred times and I could barely let them go. But that evening as I sat and stared at them one last time.....something inside me just was bursting with pride. The same pride a mother feels when she sees her children walk down the isle to receive their diploma to graduate. I just stood up in the middle of my living room, with no one around, and said quietly to myself, "Yes, we are being heard, finally." Bless you Parkinson's DiseaseFoundation for giving us this opportunity and bless you, the makers of these panels for your time and effort while battling this awful disease and last but not least thank and bless you Patientslikeme.com for giving us a home to flourish from........As always Pokie
Look what showed up in my home town paper in the middle of nowhere today...the town was buzzing! LOCAL WOMAN JOINS IN ON PARKINSON'S QUILT PROJECT
Vandalia resident Charlene Pryor recently used her talents to contribute to the Parkinson's Quilt Project of the Parkinson's Disease Foundation (PDF) seeking to raise awareness of Parkinson's Disease(PD) and the need for a cure.
Pryor, 63 was diagnosed with Parkinson's in 1995 and took up quilting as a hobby in 1980. Among the many quilts she's created over the years, one of her favorites is a piece she made about her experiences living with Parkinson's.
So when she heard about the Parkinson's quilt Project, which will bring quilts together from all over the world, she was eager to get involved.
She not only sewed a panel for the quilt, she also serves on the project's advisory committee. In this capacity, she performs outreach to other people affected by Parkinson's, letting them know they too can play a part.
Pryor's own quilt panel, entitled "Thanks" is a tribute to the various Parkinson's organizations, including PDF, that provide important services and information for those with PD.
Her Panel, which she sewed in one week, features logos of each charity, which Pryor calls "lifelines" for those with Parkinson's . Pryor said of her efforts, "I am grateful that PDF was able to provide me with an opportunity and that they are bringing together quilters who have the same goal in mind: to let others know about Parkinson's.
"I also hope that my contribution to the quilt project lets others see that they too can help make a difference by becoming involved, whether by quilting or any other means."
Robin Elliott, executive director of the Parkinson Disease Foundation, the organization that is leading the quilt project, said,"The true power of the Parkinson's Quilt Project comes from the 600 individuals such as Pryor,who actually create the pieces that we assemble. When the quilt is displayed for the first time at the World Parkinson's Congress in Glasglow, Scotland in September, it will radiate her contributions and those of hundreds of others around the world who, like her, are touched by Parkinson's.
"It will also remind the world that we need increased awareness and funds to find a cure for Parkinson's. We applauded Ms. Pryor's efforts to help make all of this happen." Those interested in learning more or requesting an image of Ms. Pryor's panel can do so by calling PDF at (800) 457-6676, emailing info@pdf.org or visiting http://supportpdf.org/quilt.
About Parkinson's Disease
Parkinson's disease is a progressive neurological disorder that effects nearly1 million people in the US. Although promising research is being conducted, there is currently no cure for Parkinson's About the Parkinson's Disease Foundation
The Parkinson's Disease Foundation(PDF) is a leading national presence in Parkinson's Disease research, education and public advocacy. It is working for the nearly 1 million people in the U.S. who live with Parkinson's by funding promising scientific research to find the causes of and a cure for Parkinson's while supporting people with Parkinson's and their families and caregivers through educational programs and support services.
Since its founding in 1957, PDF has funded more than $85 million worth of scientific research in Parkinson's disease, supporting the work of leading scientists throughout the world.
Come Walk With me along life's path And I will walk with you. We will share our joys and sorrows the way good friends shall do.
I'll take your hand and you'll take mine We'll walk together on life's path. There is no gift more precious than A true and life long friend.
And when the sun is setting and we pause to watch the sky, I thank you Lord for the pleasure that my friend has brought me by......
Friends wander in and out of our lives these days as the whole world seems to be moving at way to fast a speed and yet out of nowhere came a special friend to lighten my mental load just by holding my hand. My guardian angel was really looking out for me on this day when out of nowhere appeared someone I had not seen for decades and the amazing thing is the beauty in the sincerity of the thoughts and words that flow from this chance meeting. Just a small writing in thank you for what you have given me back in my life...My Friend love Pokie
Reality came to play in my yard today. I watched her with wonder from my room with a bay. She danced and she sang and she chased butterflies. I sat and I stared and I wanted to cry.
How dare her come to my yard and bring such glee. Where roses grow in colors and bunches of three.
She ran in between and merrily she flew. My life's been trespassed...... For Free.
Odd my mind would go here yesterday, when in the Midwest the temperatures soared past a hundred and rain came by buckets, but, I guess, it was the sight of butterflies dancing around every available flower in the yard that sent my mind to wander this path. So many uninvited things have been entering my life since I started to battle Parkinson's. Usually I don't dwell on losses and try to go on, but I see now, because I thought I had dotted all the "i's" and crossed all the "t's" as I went along and never was one to look back that I was eventually have to face facts. Then along comes something or someone who you cannot ignore and they are not considered a trespass but as they wonder into your life you are forced to acknowledge the times you have had taken away leaving so little to respond to life with. You look back and so want to be the person of before, agile and carefree but know that your bones will never leave you painless for a romp in your past. One thing I am so fortunate to have realized today,is that while the taking away was in process, some things were left behind. My heart and my mind hid quietly away as my mobility was stolen and gone. Once my body could no longer move, my figure soon drifted to places that were impossible to enter and at this point my mind sought solace and declared,"Enough." I have since realized, my heart and my mind took over for what was taken away and that was fine until yesterday and I dreamed of years gone past and freedom of flight. May it be possible, we will only see, if my mind might be stronger than all of me and gain me this one last chance at life that had slipped away only to be saved for another day. love always Pokie
As most who follow me know by now, I am an avid supporter of the website Patientslikeme.com and have been for years. Our forum posters range in age from early twenties to late seventies. We band together as a very tight knit community who care deeply and sincerely for each others welfare BUT as we meet virtually every morning for coffee on the Internet, it becomes ever more evident that this country, MY UNITED STATES OF AMERICA is letting it's seniors and particularly it's disabled seniors slip through the cracks. What is America thinking? These men and women are not only our past but in their genes and minds hold all the answers to the future. All of a sudden no one wants to see or hear of the plight of the disabled senior. I have copied some comments and stories from the sight and with their permission I am passing their stories on to you. read with an open mind and heart and tell me if this is fare in any way.
"I don't post in the 'negative' range, but i think I need to for now. If you ever read my comments in the past year you know I am the type of person who sees the glass not 1/2 empty, but 1/2 full and that means there is room for tequila, ice and a party. However, somewhere, someone turned off the music. Some know that my wife is also ill (something worse than PD) which is easy to deal with in comparison. Last year, the PD got to a point where I could no longer work at a job which I've loved for 25 years and that, too, I have adjusted to. I've come to terms with the facts that some days I can't drive, type, work a button, tie a shoe, or go swimming by my self...such is life.This is where the problem lies; since I was 16 years old I have worked every day that I could put my feet on the ground and felt that was the right thing to do. During that time I have paid my fair portion into a system which was to be a safety net for those in need, BUT...with cobra insurance no longer available because the premiums went to $1400.00 per month, I find my self uninsured. no one will sell me a policy and every state mandated continuation policy seems to require that I run out of Cobra first. The DCF states my unemployment income is too much to get help, but they did offer my wife (who has medicare and the same resources) medical assistance. I am trying to get SSDI and even with all the doctors agreeing that I shouldn't be working, "The process can still take a couple of years" I Have called the SS Office, my lawyer, my congressman, senator, paperboy......The only one that has called me back is my paperboy because I owe him money.
I have traveled this country from end to end. It is an AWE inspiring gift from GOD and I feel grateful that I have been allowed to see so many places and people in the country I was born in. I LOVE MY COUNTRY very much, but I DESPISE the leaders of this country for the continuous joke they perpetuate on her people wrapped in the lie of health and social compassion.
Someone turn that damn music back up, will ya?!!!!!
This is the third time I have encountered this type of situation in some form this week. From phone calls to the Internet to people at the grocery store. This is dead serious and some one somewhere better be listening or it will be the sixties all over again..... love Pokie
I want to hurry up and get this on line. You may have noticed last week on my newsfeed on Facebook, a very close friend of mine gave me a sneak peek at what him and ten other Parkinson's patients have been working on for the Global Congress. Please view this and listen. The information in here is huge. Send me a reply or check in at http://parkinsonscreativecollective.org More to come soon and thanks Bob and Peggy..love and good luck Pokie
It's three am and here I am with part of my family. October 7th of last year I had just finished my live setup for the 2.o Med conference in California when I went down with a grand mal seizure and once again I was in the Epilepsy World. After 13 years of dormancy, it was acting up again. Scary , huh? Yes, but what was different this time...The gentlemen setting on this stage, some of the men from PatientsLikeMe.com., were and are my backup family. After four years on their site and so few days without me logging in multiple times all day, they know me better than I know myself. I have often joked that when it is my time to pass on, Ben will know months in advance. The most important part of this family, is their heart...always there, always caring. I trust them above all else. Some day I will have to sit down and write about my experiences on PLM. There probably is enough for a very funny book. I have clowned around at night when no one else was posting or even up, just me and Mr.T, the moderator. When I have had questions about outside Parkinson's advocacy, I can and could always drop a letter to Jamie and the response would be, "What can I do to help. Pokie" After the seizure in October, I returned to the site from the hospital a week later to find an invitation to join a beta testing on their new Epilepsy site. I've Beta'ed the Moods Community which they launched on my Birthday and waited for me to sign on and surprised me with a picture of a rocket blasting off and a big on line celebration. When it came time for the 2010 Parkinson's Unity Walk, in NYC they sponsored our team, through me, with a huge donation. When I started with them they were just starting so we have grown and learned together and as I was talking to someone today and they said they could see the difference WE are making for chronic illness patients. In the past four years the shift has definitely been from doctor ego to patient needs. That "one on one" interaction is often much more important than medication of any kind. And I don't mean to put doctors down. I have had one of the best Neurologist ever in my estimation and hope to return to him as soon as I can travel to St. Louis for visits. We were, above all else, friends and he would always ask for my input and never over medicate. I neither want or need to be a zombie because of my medication. I have "X" amount of time left in my life and have no intention of spending it sleeping twenty four hours a day. Well, you get the idea, I hope. I am so proud to say I am associated with Patientslikeme.com and the crew there. I thank them for making everyday a new experience for me and showing the World just how important a social health network is towards finding a cure and furnishing a better quality of life as w suffer through......thanks again, Love always Pokie
Check this out and be prepared to start out crying and end up cheering for my new idol in this never ending battle against Parkinson's, arthritis and everything else that just keeps me from walking and doing what I really want to do. Look at that look on Larry's face! I have felt that look. I have seen the world through those eyes......and I am and continue to fight for life as I love it. No I am not too crippled. No I am not too old and No my life is not all about PD but it is about mobility in any form and through that mobility...... TOUCHING......always love Pokie
