My PD Story |
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"It has been my profound and humbling experience to have been allowed to be present when history was being made. Over the years, my friendship with United States Representative Lane Evans (D-17th District Illinois) has led me into the political arena and into some very heady situations. I was asked by Lane to go to Springfield, IL-the state capital and to introduce him at the press conference where he would announce his 12th bid for election and I sat beside him as he watched CNN for the election outcome. I was invited to several parties in the Quad Cities that were hosted by Lane and introduced and honored an as-yet-unknown, Barack Obama.
I was also asked to speak at three Democratic Unity Dinners featuring the cream of the crop of Illinois Democrats. I would like for you to share, if you like, my impressions and my words as my way of chronicling this brief time of history and to share with you the feelings of being completely overwhelmed that these bigger-than-life historical people would listen to the words of a housewife from Chillicothe, IL. What follows is the text of my second speech to the guests at the Democratic Unity Dinner in September of 2005:
Lane Evans and I share a profound relationship.
WHAT, one might ask, does a handsome, charismatic Congressman whose achievements include serving his country as a Marine, graduating from Georgetown Law School, 11 terms in Congress; who is used to the company of presidents, kings and political powerbrokers, have in common with an unheard of housewife and mom from Chillicothe, IL, an old hippie and a retired bartender who never finished even junior college?
The answer to this mystery is Parkinson’s Disease.
There is good news and there is bad news to report about Parkinson’s Disease. The good news is that doesn’t kill you. The bad news is that it doesn’t kill you.
Parkinson’s Disease takes no prisoners and it doesn’t care who or what you are. It is THE great leveler. It has held hostage Pope, evangelist, artist, the world’s greatest, Joan Blessington Snyder |
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"Hello Everyone: I often wonder what my life would be like if I had not been diagnosed with this dreaded disease called PD. When my doctor told me, my Mother was with me and we both cried. I said why me and the doctor said why not you? So from that day forward I made a vow that I would do all I could do to find out what God had in store for me. Well I believe I have found that. I have some wonderful friends in my life that I would have never met if I didn't suffer from PD. I have been to the YOPN conferences all over the US and I feel I have accomplished something wherever I have been. I have made an impression of some kind that is a positive thing for Parkinson. Even if it was to comfort someone in their time of need or they just needed a friend to listen. I have been there for them. I have assisted them to their room when they were not feeling well, and their meds would not "kick in" fast enough; or maybe they were feeling weak and depressed. It has been very rewarding to me, and what a blessing it is to be well enough to travel to these events. It has not been easy but I have endured the pain. I will continue my march throughout my life, and I will continue the fight for a cure until the last breath leaves my body. I am deeply dedicated to finding the cause and cure of Parkinson's Disease! I think we all should make this a vow; and I know some of you have already done so more than once. I believe it is well worth our time to attend these events and receive information on the new discoveries of medications that help our dreadful symptoms and the surgeries that are available for us to consider. We need to share this with our family and acquaintances. We need to shout it from the roof tops or talk to people whenever you have the opportunity and educate them about PD. If you are on a plane, talk to the person sitting next to you. Most of the time they are willing and very much interested in what you have to say. Whenever you have the opportunity, make someone aware of what PD is all about. Awareness is of the utmost importance. My first YOPN conference was in Atlanta, GA. I traveled to GA with my dear friends Linda and Derrick Weaver. She is a young onset patient that lives only an hour away from me in Alabama. She and I have very similar symptoms, and we have a wonderful friendship. We are compatible as friends, and we respect each others feelings. We get along like Mother and daughter. You see, she is young to have this disease if there is any right age. Who knows? I know it can be miserable at any age. She is about 39 and has had symptoms since her teens. It took a very long time for her to get a diagnosis, but she finally got the verdict. It was a life sentence of PD. But she has not let it stop her because she organized a support group for patients who are not mobile--she goes to them. She honored me not too long ago at a PD fundraiser that she organized -- she says I have been an inspiration to her and so many people who have PD. Now that makes me feel it is a worthwhile thing I am doing. Without PD I would have never even met her. I think most everyone knows my dear friend Kaylee Jenkins who has done so much for PD awareness. I remember meeting her in Atlanta. She was wearing a beautiful black dress looking so lovely, and her husband Marty was so handsome in his western attire and cowboy hat. She calls me her Bama Butterfly Buddy. My husband Dan and I attend her event Parkinson's In The Park every year and she has been to Alabama to help with my event Guns Afire for PD -- Clays for A Cure which is coming up soon -- October 4th in Ft. Payne, AL. We collect money for PD research to help find a cure. Then there was YOPN Minnesota where I saw my friend Tutti Fruiti (Caroline from England) and her hubby Jim. They are an awesome couple. They acted like family and are so pleasant to be around-- always smiling and friendly. She and I are poets so we enjoyed sharing our poetry. She writes more romantic, lovely poems than I do. Mine are simple and more "down to earth" writings--some are intense. I also met Cris (Cinemaripper from Chicago) at this event. We had chatted in the chat room numerous times. My good friend Gary Boyd (gbirdboy) from Houston was there, too. He, Cris and I went on a trek to the Mall of America and that was a riot with those two clowning around the entire time. My fellow Senior Advisor Jackie Christiansen was the conference coordinator, and it was an excellent event. I also spent some time talking to Ron Crawford from Texas. We sang kareoke one night and that was so much fun. YOPN Phoenix was where I was dancing with David the U-Step Walker salesman, and I fell on the dance floor. I just sat there looking so bewildered and laughing about it. He said how could I let you fall and looked so shocked. It was a great conference. I saw a lot of my PD friends. Mike O' Leary was there in full force since he was the conference coordinator and Linda who now is his wife was there helping with the program. My friend Paula Tomlin was there with her sweet smile and wonderful attitude. Wendy Schindler and her husband came to this conference and I had a chance to meet her in person. We had chatted quite a while on line before we finally met. Then I went to YOPN Reston, VA -- what a great time we had. I believe the weather was cold but our hearts were warmed by the camaraderie we experienced. I was not feeling up to par then. That was right before my DBS surgery was scheduled. I set the date so it would not interfere with my attending this conference. This is where I met Sherry from Louisiana who I chatted with a few months before. I met Steve from Louisiana who was scheduled for DBS surgery right after I had mine--he was referred to me to discuss DBS surgery in Alabama since he was traveling there for the surgery. The Katrina hurricane was so destructive that they were not performing the surgery at that time in New Orleans. My special friends Angela and Karl Robb were also there. They were the conference coordinators and did an awesome job. I think they are a wonderful couple, and I always look forward to seeing them. We must not forget YOPN Chicago and Mark Rubin the excellent conference coordinator. I was honored to make his acquaintance. I know I will never forget Chicago since I lost my cell phone there, and all my numbers I had accumulated through the years were gone. So if you haven't received a call from me lately, that is the reason why. Call me so I can save your number to my new phone. I also met some new PDers -- I am anxious to see if they will come to Atlanta this year since they seem to thoroughly enjoy the Chicago conference. I met Lonnie Ali at this conference--she is a great lady. I have a photo of us together. This is where I stayed up all night since I had a 6:00 A.M. return flight the next day. I remember I was afraid I would not awaken in time to catch my flight. My friends Gretchen and Michael Church were at this conference. I am looking forward to seeing everyone in Atlanta this year. So this is what my life has been like WITH PD. Not too shabby! Do you think? I guess I will just have to imagine what my life would be like WITHOUT PD. " |
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" The title page I meant to add this to my previous submission. The picture displayed on the title page of this website is so very special to me. I am proud to say I was there the day and time the picture was made, in Central Park, on a beautiful day in April 2007 at the Parkinson's Unity Walk. Each of those ladies are special PD friends of mine, and I'm glad I was able to share that day with them and take the picture! Who would have thought that 5 women who had met on the internet from different backgrounds and locations would come to share a special time of hope such as that day in a show of determination and desire for a cure for the illness we all have...Parkinson's disease? Pictured l-r Karyn from Australia, (front) Carol from Alabama, Annie from New Jersey, Becci from Indiana, and photographer, Judy from Tennessee." |
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"Carol's Story Basically, I consider myself to be shy. I'm a very private person. I live my life like anyone else would except that every now and again, I talk to people about it. And what I am out there talking to people about is my fight against Parkinson's disease, my motivations to keep going and how I deal with the disease every day of my life. I was diagnosed with Parkinson's disease fourteen years ago. I started to have a lot of stiffness in my back and decided to see an orthopedic doctor. Noticing my slight tremors, the orthopedic doctor referred me to a neurologist, Dr. Richard Hull, who diagnosed me with Parkinson's disease. I really did not know what I was going to do. I had spent most of my life living in Alabama, but had also lived in Germany for 3 years while my husband was deployed there with the U.S. Army. I had been a U.S. government employee and a volunteer with the Red Cross. Suddenly, all of those wonderful experiences seemed dwarfed by the realization that this disease was going to take control of my life. But after a lot of crying and a lot of asking "why me", I knew that the better question to ask was "why not me?" I had always loved helping others - friends, family and even complete strangers. Now, I knew that I had the opportunity to help others cope with their Parkinson's disease while ultimately helping myself. It is very fulfilling to meet people who have the condition and to hear their stories. Some of my activities that have helped me to help others and cope myself include: Attending at least one support group meeting a month Finding the drive to take part in clinical studies concerning Parkinson's Disease treatments Being very involved with the Parkinson's Action Network as the Alabama state Co-Coordinator Traveling throughout the Southeast to speak before various Parkinson's disease support groups Organizing fundraisers for Parkinson's Disease research Lobbying Congress for research funding for the disease But what has possibly made the biggest difference in helping me cope with the symptoms of the disease is a breakthrough technology in prescription medication. PARCOPA is an orally disintegrating formulation of the drug carbidopa-levodopa used to treat Parkinson's disease. PARCOPA is designed to provide patients with improved access to the medications that they need when dealing with tremors, stiffness and slowness of movement. This drug has been so helpful. When I first took it, it seemed to kick in after about 10 minutes. I had never experienced that before. Now, after taking PARCOPA for over a year, I talk to many people at conferences and over the Internet who share my same symptoms. Sometimes people are so surprised to hear that there are choices out there for them, that they can choose different ways to take their medication. I am so grateful that my doctor let me know about my options. I'm so much more at ease. I have started singing in front of people; something I would never have done in the past. Believe it or not, this disease has helped to bring me out of my shell. When I was younger, I was always shy and tongue-tied. Now I have all the nerve in the world. I truly believe it comes down to working hard, making yourself happy, and hoping for a cure. If I have anything to do with it, that cure will come soon. But until then, I will continue to attend meetings, write poetry, help out friends and every once and a while, sing the national anthem in public. Also, I have written a poem about finding a cure for PD, entitled "On The Horizon." This poem was published in a book of poetry compiled by the World Parkinson Congress that convened in Washington, DC during the month of February 2006. I will also continue my constant battle with PD and live my life to its fullest. I am an Army wife, and a retired US Government employee after 30 1/2 years as a Management Analyst. I have been married to my husband Dan almost 36 years, and we have two wonderful sons Robert English and Bryan Meenen. I also have an adorable Granddaughter Sydney Lynne Meenen. My elderly Mother lives near me; and when I have a good day I try to help care for her--she requires constant care most days. A year ago, January, 2007, I was selected for DBS surgery at UAB Hospital, Birmingham, AL. I had completed numerous tests for this procedure and today I’m doing well. " |
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"A friend of mine, Jim Harris from Pa. has Parkinson disease and just found out in 2007. He is a great musician and it has affected his abilities in his performing on stage. It not only affected his playing, but his whole life and the entire family, simply because playing music has always been a part of his life and now this terrible disease has come into their lives to destroy everything that God has blessed this man with. I pray that all the people who now have this disease and ever has to go through it with anyone they know, that they have enough strength to help each other, and just be there when times are at a low for them in some small way. Just take notice of how many around are dealing with something that we all take for granted that we think it will never be a part of our lives. Now, is the time to reach out and be apart of someone's life that you may make a difference so they know their not in this fight alone. God bless all of you for helping in some small way. Remember the founder of our site, she is always there for you to call on for your times of need, Carol Meenen. " |
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"PD dementia is supposed to be different from Alzheimer's dementia. I am not sure, as a victim of the PD version, what I look like from the outside but I do know that I have "slips", lose time, act "different" and am upsetting my family. Still, I can function, drive, travel and interact ALMOST normally. This poem came to me as I woke up several years ago. It still describes best to me, how PD works its magic on us behind the limps, slowness and shakes. On Dementia and Dying By Patricia Bissell PWPD since 1999 On waking this morning I suddenly knew That the threads that bind us, from me to you Are slowly and softly being snipped into two Those memories, those feelings, those connections to you. I know they say, I’ll be the very last one To know, but time is flying, and I’ve barely begun, It’s those threads that connect me to the week or the day To the year, to the season, they’re all slipping away. These gossamer strings that pin us together, Where a nod, a blink, a look signals my weather, On waking I tug on these threads that touch me to life, But lately I’ve noticed they’re just cut like a knife. The strings are fading, the tugs getting weaker The echo to “my” world suddenly feels bleaker. I remember the time, but forget who was there, I taste the memory, but lose why I care. You ask me to listen but my mind’s far away It’s trying to remember if today is today. When a loved one starts to go, they rarely say good-bye. They slip into that ‘tween world when heaven’s nigh. But I know how that hurts, seems lacking affection, It’s not that at all, just a severed connection. So, now I will tell you, and you and you…. You ALL are my joys, my being, my life. I so loved being daughter, sister, mother and wife. You were endlessly important, my mirrors to the world, LIVING! Unthinkable without you! But that life has swirled Down cracks that furrow my brain, (Like broken eggshells scraped down the drain.) Splitting me from me, And you from me, too. I loved my life, my whole life, you see. It all, even this end, were meant to be. I wish I could say it more tender, more true, Here it now is, the bottom line of my Being with you: I love you, you , you and you – all of you I do. Love’s threads will ALWAYS bind us, from you to me, From me to you. Just look for a sign, may a web brush your face, Or a butterfly wing open its beautiful grace, A balloonstring may touch your cheek as it lifts up, up away, That’s ME wafting heartstrings to you from my cool, airy bay. I’m up here just watching you tie up your strings As you now trudge on through that life without my wings. You’ll be glad I wrote this for you: DO NOT GRIEVE, I’m here, my loved ones, just tugging your sleeve. I see it all now, so clearly it seems As if all life had been a series of dreams. Don’t dream away your time, but make it all BE A time for YOU to tie ribbons on NEW loves And be free. I love each of you. Submitted by pbissell " |
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"On a hot summer evening, the sun setting on this little town, the shadows stretching across our farm, dirty feet barefoot on the tailgate of my truck, a bag of pole beans just freshly picked! My little girl looks up to me and asks if this Parkinsons Disease was going to make me die? I struggle for the answers! I knew that this would not take my life, but it would definitely make things hard and how was I to tell this to my sweet child at age 8? I knew she wouldn't really understand, but still sat patiently , waiting, reading my face! Looking to me for the answer! She wipes my tear with her little shirt, still dirty from the garden, as I tell her of this thing that has come into our lives! She smiles, hugs me and says she will always love me! This IS where I get my strength! " |