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Pokie's Journey to 2009
January 2009
Wednesday January 28, 2009
Posted by: pokie too at 3:44AM CST on January 28, 2009
Three AM and the Winter of 2009 has arrived in Illinois. The snow is beautiful tonight. Huge flakes are drifting in a steady rhythm. as they dance across the back deck. our have to daydream when you watch it snow or in my case night dream. Since Parkinson's has come to live with me all things are free game for reversal. Days become nights and vise versa but beauty persists. As I sit here with my coffee in hand and watch the world become pure once more, I can not help to feel just a little bit of apprehension at what may be coming. No longer does the thought of Parkinson's and what It is doing to my body take center stage. I worry about people who have lost their homes or have their homes and cannot heat them. Families, young and old who one day have a nice income and the next have none. Will this new blanket sent from heaven bring peace in troubled times. In my world, all things came to a halt at four yesterday I was not able to get the car up the hill to my house. I live a out in the country and on top of a very steep hill. I gave the hill three real good tries and just parked by the mailbox and hitched a ride to the top. We're done! Ah, but if you can not go in the car ,out here, you do not go...so home I will stay. Since I always take things personally, I view this as God's way of slowing me down....and I probably need it. Every so often one needs a snow fall to slow you up...just a little..to see how beautiful some things are around us and appreciate them. I can remember bad times when I was raising three teenagers and had seven dollars to feed them, but we got through and laugh about it now. We were not in a Depression then and I can only tell you that as my mother watches the news every morning she cries. She is 83 and has Alzheimer yet remembers those times and has no desire to go through it again. She grew up in south Cape Girardeau, with eleven brothers and sisters and her father was a carpenter..Times were very hard.
So as I ponder all these thoughts this morning, I'll pray for better times for all and hope that everyone will remember that blessings come in odd packages sometimes....and this snow could be a blessing in disguise....slow up and look how beautiful it is and give thanks.....love Pokie Tuesday January 20, 2009
Posted by: pokie too at 5:15AM CST on January 20, 2009
Wednesday January 14, 2009
Posted by: pokie too at 7:04AM CST on January 14, 2009
New York City Here We Come...
Posted by: pokie too at 5:15AM CST on January 14, 2009
The last weekend in April will never arrive in my household will never arrive in my life again with such anticipation. About this time last year I decided that I could go to NYC for the Unity Walk, though all in my family said "No". Not just "No" but "Hell, No" and being a very obedient mother of three and grandmother of five...I went and thus began a year of endless travel and self discovery. Always on my own but never all alone. I met with people I did not know in places I had never been yet all along felt protected from harm in some way. My faith runs very deep and though you wouldn't know it unless you got to know me well, it governs all I do . I usually start my day by asking God what he would have me do today and sometimes I just have to laugh at the answer I hear, yet I try in some form to carry through....God's sense of humor never ceases to amaze me.
This year I am a season traveler with flyer miles under my belt but things are not going smoothly. The team has grown and I am the cocaptain.....Blocks of rooms are hard to come by especially at a lower rate.....Internet purcase is not going to work because with Parkinson's you pray for a good day and you sure don't put down a thousand dollars (non refundable) on a chance you are going to be able to go. Nothing will stop me this year short of dying but I have no family to account for and book in. I feel responsible for these people and want to spend alot of time with them and I will get this straightened out....To add to the confussion our web site will not be having a booth this year which is where we hung out all day last year. They kept our bags and what ever so we didn't tire out so early or have to carry it in the walk. I have always believed if you worked hard enough you would achieve your goal and work we have. We will be in NYC the last weekend in April walking for ll our friends on Patientslikeme.com. You'll see our smiles on Webcast and you'll know we are making a difference for a cure..."One on One" "Together in Strength Forward in Hope" Sunday January 11, 2009
Posted by: pokie too at 8:48PM CST on January 11, 2009
This is Sunday and it belongs to God in my mind. A day to rest and listen to the plans he has for the coming week . My Sundays usually do not alow much time for listening.....Even in the deafening roar of grandkids chatter and Disneys' Zack and Coty and Ms. Sirris....I sat in my recliner this afternoon and wandered in and out of sleep. I cannot tell you one thing that I dreamt but I know I did dream. My grandkids, eight and four, were carrying on an endless amount of senseless chatter. The news was of war and confusion and never a happy thought except the prerun for the inauguration went smoothly and the new first family took a tour of Washington, D.C. so all could get a sense of being at home. The awards were on and the women where looking prettier and the men a little scruffier. Only my opinion and my mom will never miss a chance to say tha they really need to pu some more cloths on....
Honestly my sense of being at home has been drasticly altered in the past six months. Me, with advanced Parkisnson's, trying to find a healtly way to survive as long as I can. My mom, with advanced Alzheimers trying to remember just the littlest thing to get through the day...How to make a pot of coffee or operate the TV are far past her abilities at times. She cannot seem to figure out why she is so tired all the time. She says'" I just go from chair to chair trying to get things done, and then I forget what I was trying to do." She has the right to be tired she is twenty years older than me and has lived a hard life. With every news cast, you can see the fear on her face that the Big Depression is lurking at her front door and she realizes, though faintly, that she can not fight it off or defend herself this time....Her longevity and safety is in the hands of someone who has trouble walking and is obviously always in pain.That someone is really not much fun as she goes in the study to type on that darn machine. We have met a crossroad. If I sit I fall asleep and if I walk I have to sit from pain then get up and go again. Actually we have similar stories but one is 60+ and one is 80+. sure doesn't say much for me. I'm going to try something this month and see if this will help......I am investing in a Wii and see if she will participate. She has never been sports minded and has always just been a home maker.....so this may be a stretch....but somewhere in there maybe there is another soul that wants to play for awhile...I think it is worth a try.....She seems to want to do what I do.....If I move furniture she does too. Often she jumps out of the chair and goes to the kitchen sink and washes dishes. She seems to be very bored with life in general and I think it is because my life seems so exciting to her. I must do what I do at home and the phone is ringing constantly as I move from room to room with stacks of papers to go here or there. Tonight I put a new office chair together as she watched TV . She never said a word and really didn't seem to interested. I thought she had went to bed and here she came back upstairs and said, "Did you get it done? I knew you could do it." I hope I can continue to do it and she believes I can......love pokie
Friday January 9, 2009
Posted by: pokie too at 1:19AM CST on January 9, 2009
Days like this just do not happen to the ordinary person. Especially if that person is an ex goat farmer (?) in her sixties with Parkinson's Disease. I have been working on forming a support group in Fayette Co., Illinois for three or more months and with that I had a dream of holding a Symposium on Parkinson's and the showcase the newest advancements in treatment. In Chicago or St. Louis this is no big thing but in VANDALIA, ILLINOIS THIS IS HUGE. Yesterday I got a date.....May 2, 2009. I am so excited. The agenda starts with David Zid from Columbus, Ohio and Dr. Max Benzaquen,M.D. Neurology from St. Lukes Hospital with more to follow . Though this is a very big event, the biggest part of it was that my oldest daughter sat in on the meeting with me and seemed to enjoy it. I have been trying for a year to help my chidren to understand this passion that has robbed them of their mother in most common respects and have hit one brick wall after another. Last night was every mothers dream come true.
I fight Parkinson's and have for some time now with everything in my being....I sit down at times and wonder where the next ounce of strength will come from. There have been nights I have just sat and stared at the computer waiting for the words to come only to fall asleep at the keyboard and wake up and the words flow like mad. Most of what I do, at this stage, seems crazy to the outsider let alone a family member. It is so hard to explain that I have to go the extra mile while I can. This Symposium can be so big for our town which seems to be drifting into a sleep it may never wake up from. The posiblities and facilities are there for the taking and the rewards are going to be so long lasting....Davids' program takes a non functioning person and shows them how to get out of a chair when they cannot......step when the brain says FREEZE....It is, as he is, a miracle. This has been a long day. I started by getting up at four to drive to Chesterfield to an orthopedic surgeons office. My appointment was for 10:00 AM and as luck would have it I had no trouble this morning so I was there very early but they took me in and so i was back on the road home by 11:00. I got home and took a slight nap and took off for town to a meeting at the hospital and then back home to get caught up on my three blogs and email and rest for tomorrow. What could I possibly be needing to rest for tomorrow....Unity Quilt Day. Yes, the quil is coming together as are the squares each their own work of art. More on that later...It's time to try and sleep once more......pleasant dreams...pokie Sunday January 4, 2009
Posted by: pokie too at 2:56AM CST on January 4, 2009
I am reminded today that only seven months ago it started with the statement I made to myself at three am in the morning while on the internet. "I CAN DO THIS". Though i had never don it, nor was I suppose to, I knew I would try no matter what. My shroud is my faith and it buffers me from harm, it seems. Though I have my bad days a we all do, it seems a correction is made and I'm off again. The exhilaration I feel is hard to explain. Now in January, it is so hard to not travel to somewhere, after months of being on the road. The plans made last year will make for a very interesting 2009 and who would have thought that I would be making a difference. The point has been proven and that point is. "ONE ON ONE" WORKS. One patient helping one patient yields two patients feeling better and it just keeps multiplying until we find that covered up space where the cure lurks. I sit here looking at a picture that was taken of me boarding a plane at St. Louis Airport last April, going to New York City. I tried several times to delete it and it came back until I read the little sign in the back ground. "Turn to Christ" is what it says. I blew it up page size so I could look me very much in the eye. I can see the different person even then though I had no idea of the magnitude of things I would do on my own. Maybe that was just what God wanted the world to see. Me, a granny in her sixties, not owning stylish cloths, walking with a cane, blundering though from one place to another. I am subjected to all kinds in this but once again my faith pulls me though. I am a novice and very believing, but you have to be to do this. Money does run short but I always get through. If I am used in one place, I am needed in another and the faint of heart fall by the wayside. Seldom do I write just about me. It seems like such an "I" thing and very self centered, but here on January 1, 2009 my resolution is to physically attack each day as if it were my last and make a difference. I will make that extra phone call that will bring a needed idea to some place who has no ideas left. I will hug someone who has not had a hug in a long time. I will lend a shoulder to someone who neeeds to cry and I will listen.
Life is good and we as a coutry have a fresh start. Let's band together to make this land and world a better place dor all that follow us. God gave us life. Let's make him proud. Live each day to the most and though they say never look back, sometimes the view is awesome over your shoulder....love pokie ... (more)
Posted by: pokie too at 2:03AM CST on January 4, 2009
I do not see how anything can possibly beat last year but ,IT MUST. I can not believe the happenings of even the last six months but they have happened and with every new day my life changes. I have to ask. Was I like Rip Van Winkle? Did I just sleep through the first sixty years of my life only to be rudely awakened at sixty plus to a world spinning around a hobbled intruder. I barely allow time to sleep because there are things to learn and places to go before the alarm clock goes off....leaving me on the other side of a beautiful dream. I am assuming if you survived sixty years of such stimulation you would be bunt out. Daily someone warns me to slow up, you will indeed burn out. the places i want to go this year are already on the calendar and the stories I want to tell dance in and out of an already crowded living space called my brain. The things I use to do to occupy my time, now seem so mundane and pointless and the new interests keep calling me to come out and play. I am like a cat on the prowl, if there is a door lightly ajar, I must peak in. If I have a question, I must find an answer The word multitask has taken on a whole new life that has chosen not to include my past life style. There are appointments and meetings with people I would have never met, talking freely about a disease or a band of many diseases that seem to be showing up everywhere with no mercy on their victims.....to be continued pokie
Posted by: pokie too at 1:24AM CST on January 4, 2009
I spent the day yesterday downloading copies of all my writing and organizing. I read and reread the events of the last six months in total amazement of the things that had happened. I think I will just bring up bits and pieces for a while and let everyone get caught up....
We in Fayette County are hungry for medical knowledge, as are most counties with inquisitive "baby boomers" not wanting to just take the diagnoses and go home with the meds and never question. Something about the "Old Hippy" just never takes anything at face value and leaves it that way. Several months back I gathered all my books and material and courage up and visited the Fayette County Hospital to find out if they had a support group for Neurological Disorders and if not did they want me to start one. As luck would have it my first encounter was Kim Shanks, who got the ball rolling by furnishing me with a conference room , tv and refreshments. We lined up a radio interview and the ball was rolling. I have now been on the Morning Show with Dan Michaels twice and will be going back again the 20th of this month. If the weather wil just cooperate we can really get this launched in a big way . Next on the Agenda will be trying to get a Medical Symposium together for spring. We have doctors and health people who have expressed an interest to unite to use our physilities to the best with the most update programs....I seem like an unlikely connection ...but over the last year have had many programs tested on me and have volumes of paperwork to distribute not to mention the people I have met in the Parkinson's Field to help. The next six months should be very interesting as things come together for the area. |
About This Blog
A description of my journey to the 2009 Parkinson's Unity Walk in 2009, including interesting stories and bio's on our team members, our thoughts on our goals and dreams as we work toward our goal. We will be and currently are Team Patientslikeme.com. Our home is this website where we post daily. Our goal is to raise at least $25,000.00 this year for the cure.
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• Jessus, prayer, pain
• Christmas, rebirth • hope • support • caring • washington U • Parkinson's • PAN FORUM-2 • pokie too • Fayette Co, Ill • pokie too-3 • brother
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