A SPECIAL SUNDAY

Now, I know, full well, that one of the first questions they ask Parkinson's patients is, "Do you see or hear things that other people don't see or hear?".....but, let me tell you my 9:00am Sunday experience on the way to church. I had been up since 6:00am getting ready for a very special Christmas service at 10:00am and decided to go on into town(6 miles)to get a special coffee for a special day from Mickey D's. I got in line and checked my billfold and it WAS empty. So I decided I had plenty of time I would go back home and find my money. I am going back through town, when I notice flashing lights in my rear view mirror. GREAT....my day is not going well and I am just trying to get to church for Christmas services. I start to pull over and realize a motorcycle.....a BRIGHT yellow motorcycle with s Santa in full dress, hat and all aboard. This was not funny enough. Around here at Halloween you see witches that look like they were looking in the other direction and flew into a telephone pole. Well this was an elf and his misfortune was the back of this motorcycle.....(GOOD MEDS,HUH?) Well, for almost 6 miles I flashed my lights at on coming vehicles as he followed. We parted ways at my road and I honked goodbye. When I got home, I could not find my money so I decided I should try to make church anyway so all would not be lost. As I am driving back I glance at my purse and my billfold is sticking out so I take a second look ......$30 dollars was sitting where (I SWEAR) nothing was before. I made it to church on time as usual and the service was very moving and serious.......though I had this feeling that God was once again having quite the chuckle at me.....Merry Christmas and love to all....Pokie

Nothing Important

Sometimes it takes a lot to slow down a mule. At six o'clock I took a half a Xanex and thought sleep would come soon. Eleven and I am still going so I took the other half, and here I am. I hate it when I get like this. I've been to church today and cooked a roast; stopped by to visit with my oldest daughter and took a nap; wrote a poem, read and prayed. I would love to just get in my car and drive but no place, really to go . I would say this is a form of depression or what we use to call "The Hebby-geebies" Usually insecurities start this and it is a fast down hill road. Surely this will end soon when I just pass out. Christmas falls on a weekend this year and SS and pension all come that week too.....I bet the stores will be crazy.....they are about that way now. Well enough of this..............I'm going to try it again. Wish me luck.....Pokie

Life in the Fourth Quarter

I wanted to write here today instead of "Today With Pokie". If the truth were to be known, "Coffee With Pokie" has always been my play area and so many always go to the other blog. At one time I wrote three blogs a day. This kept me sitting still far too long for Parkinson's and I got much worse. I have cut my writing, something I love, way back. I walk everyday and, because of my joint pain, need all the exercise I can possibly do to stay out of a wheel chair. So today I will be playing and celebrating the fact that my God loves me as I do him.... Not to long ago I was traveling home and started out in a severe rain storm....After a while, the storm passed and behind it came the most beautiful sunset. The western sky was every color imaginable which was enhance by black splotches which were the clouds left over from the storm. I could hardly drive for looking at this amazing show God was putting on for me. I had Willie Nelson on my stereo with "I'd have to be crazy" and reached to turn it up when to the right I noticed a huge rainbow which ended up right over where I was headed...HOME. I just pulled over in the middle of nowhere and cried while I prayed...The whole picture was put together for me. I must have sat there an hour and still have the pictures in my head...no camera that day. How can anyone look at something so awesome and not believe in God? I will never know. Last night I played for hours on the computer......not games but lyrics. Most don't know that I use to sing and play the guitar in my hometown while in college. That was in The Peter, Paul and Mary days and I was a true hippy. I drifted away from that when I started having kids and then all of a sudden I could not remember the lyrics. No matter how many times I tried , they just did not stick in my brain. Now almost fifty years later, I am trying to learn to play again and I look up the lyrics and hand copy them down......singing the song as I write......Good exercise for the brain and fingers. Last nights adventure was Judy Collins and 'Bows and flows of Angel hair...Ice cream castles in the air....and feathered Canyons Everywhere....I'd look at clouds that way....AND..... Willie Nelson "I come to the Garden Alone"......and he walks with me and he talks with me and he tells me I am his own...and the joy we share as we tarry there.....no other has ever known. I am indeed blessed. Lately my Facebook friends are in to quotes and signs. Both have always fascinated me. This one caught my eye yesterday..."Never ignore a person who loves you, and misses you because one day, you might wake up from your sleep and realize you lost the moon while counting stars" Neat ,huh? I use to buzz through life with three or four things going at one time, always. Now in my more "POKIE" state the colors or my vibrant. The smells are sweeter. The hugs stronger. The kisses have more passion and I love life so much more. If there were one thing I could do today for those I love, it would be slow them down...help them enjoy......life is so short, especially in the fourth quarter. God continue to bless you and you continue to give thanks...love always, Pokie

"Fairy Trees"

Tonight I am going to take you to a place only people very close to me ever see.....the inner workings of my brain. One doctor I saw a couple of years ago referred to it as a, neurological mess." Needless to say, I never went back to him again. Someone else that I love a lot once said, "honey now that is a scary place, your brain....but then you have always been differently special!" There is a child in my brain who is at play constantly. Some have referred to her as a very breakable china doll. True my feelings get hurt easily and mend slowly, but one must remember that this child sees the world from a totally different perspective. These mind problems are not always positive and do not always turn out well. I have found myself entirely too trusting and often really not rational. Impulsive, yes and very bull headed....One of the nicer things is that the older I get the wiser I get or at least I believe I am. Do you ever wonder if you may be your very smartest just before you enter heaven? When I was three or four I use to search in our woods for "fairy trees"(Trees with knots in the trucks at ground level). I named these "fairy trees" and would spend all day making the fairies furniture out of sticks and weed and leaves so their houses would be nice when they returned. In doing this, I saw every leaf and it's texture and color. Tiny twigs became bed posts and flower stems and flowers became the covers and bindings. To this day I can spot a "fairy tree" from quite some distance and the colors of Fall make it my favorite season. I spent a lot of time by myself when I was young and a considerable part of that was in a fantastic land of make believe, on my back on the ground watching the leaves twist and turn as they fell to the ground. My troubling thought is that no one takes time to dream anymore or pretend. I have tried to pass this on to my grand kids and they prefer computers and cell phones. How do you set goals for yourself and listen to what God is trying to tell you if you cannot be quiet long enough to hear? There are some things that are very high on my list. Rain on a tin roof....wind through prairie grass, the smell of new hay and the morning cackling of a hen when she is laying. My goats use to stay right with me all day, as did my dog and when they thought I had worked enough they would convince me to sit for a while, and they would love on me. Right now the goat and the dog are both gone but have been replaced by someone who sure knows how to take me on long rides and hold my shaky hand and my world is ok. love you always, pokie

A Year Ago and Today

I openly admit to the fact that I am in the final quarter of the game, BUT thank you Lord for calling me off the bench and into the game. A year ago today I was in NYC with the Parkinson Unity Walk with many of my friends from Patientslikeme.com. I was in a wheel chair and 65 pounds heavier. My hair was grey and for all intents and purposes, really thought I was headed rapidly to meet my maker face to face. As for last year, in April, I went to NYC, I was working on quilts for PDF, running three blogs, taking care of my 87 year old mom and decided to fall in love....I had my right hip replaced, got contacts, some new teeth and cloths and dropped out of sight to almost everyone. For this I my apologize......My team at the walk last year came in 13th place and collected around $15,000.00 for research....but as I changed within, I could no longer put all of me before the general public like before. A total makeover is a scary thing to go through, both inside and out and the continual fatigue and pain from Parkinson's never let up. No longer was it all about my chronic diseases and those who shared them with me.....it was me desperately trying to relearn how to love and be the healthiest I could be to recover and recover I did. I hit the road Monday with the old passion and then some...The fire is back in my eyes, hopefully for good . My love is the best, as are my friends who have helped me through this with wisdom and patience. Often they had to tell me things I didn't want to hear but I knew they were right. Tuesday I went to a symposium in Effingham , Ill. It was at the last minute and on dimincia and it was awesome. Dr Kuhn spoke at one of the breakouts and I made so many new friends....exchanged hugs and stories of encouragement. Wednesday we had our Lenten luncheon at church and once again it was awesome. Some of the things I wrote down in my notebook to remember were these: Jesus is the Lamb of God and the Good Sheppard. We can not hide from him. He can always find us...whether we think we need to be found or not. Our bodies are a temple, a house of prayer and we need to treat it as such. Our mouths need to be open and telling the story for all to hear. Jesus chose the downward demotion instead of up. He lowered himself to servitude and ultimately went to the cross for us. In all of this I had the thought. Who is keeping me from being the House of Prayer that my Lord wants? It's Me. I ask to be healed and he answered, "You Are.... Have faith, You are.' In this past eleven months, every sermon I heard, every passage I read in my "Gift Bible" was aimed toward my makeover and when I lost my way or did not understand he furnished me someone to explain and when I stub bled, I felt him giggle. Thursday I opened my email to the statement that the very first person I went to visit after being diagnose with PD was to have DBS surgery in St.Louis on Friday. Joanie is a woman of faith and a true inspiration. She knows her maker and is not afraid to let the world know who she is and what she thinks.......Praise the Lord for that. I hurried up and took off for STL with PLM's 2009 Unity Quilt, hoping to have it on her bed when she returned from surgery......Not knowing what I would find, I prayed the whole way there that I not cry when I saw her. There where 98 tornadoes that evening in our area BUT my Miss Joanie was perfect.....sitting up in bed and smiling. Alert and even walking back and forth in the hall. We talked about three hours and I left her with the quilt on her bed for comfort from all who had had a part in it. I left there ready to concur the world and what did I hear on my radio in the car? Bob Seger's "Beautiful Loser. A loser I am not, nor beautiful but I had set MY goals and they were not GOD'S goals. It's time to start listening better and as my grand kids say, "Get over it." The game is playing and we COULD WIN....Just get off the bench and join the game........love ya always Pokie

connections

It's 12:15 and I should be fast asleep and dreaming of someone I hold so dear but, here I am seeking companionship in my computer. What do people do who have no connection to the world and have these horrible diseases? My pain level is around nine tonight and with every movement comes a sound from far inside me. It's the same sound tennis players make when they hit the ball. My sound gains me no point and sometimes never even moves me. My decision is what pill do I take to gain me a peaceful co existence with the world.....Is it Zanex to sleep or hydrocodone to mask the pain. Then there is always the chance that my seizure medication could bring me some relief. When you have a chronic illness the medical world supplies you with an endless group of narcotics which might "help get you through the night" But then you have me who would rather not take medication in any form and will quite often put off medicating some thing until the pain is so intense that it takes forever for relief. I can only voice my opinion on the whole medical world as I see it today....Pray for us because we are in big trouble. My big hope was in the stem cell research fjeld. Just when it was obvious we were making huge break thoughts, a federal judge bans all future research. How can they do this when you can place a stem cell quantity in a patient and the cells grow and function....This means quadriplegic can have sensation in their limbs after many years of vegetation. Medication is being shared b cause of the cost. People are going into the hospital with one disease and never coming out because while in there they get a foreign virus and it kills them. Where does this all stop? Maybe only the heavens know........ Love Pokie

Off Days, or Just Between........

Does everyone have days like this or just people with Parkinson's? You sit in the chair believing that you will get up and do something constructive and yet you stare mindlessly at the television and hear not a word that it is trying to tell you. Huh? seems to be the word for the day as everything anyone tells you has to be repeated. Every time you sit down you nod out. I wonder if I am physically tired or mentally tired or both or bored.....Please not the dreaded bored....I fight boredom more than anything else simply because one of my college professors told me that only the stupid should ever have any reason to be bored. So with that thought firmly implanted in my brain, it has been my life's journey never to be or appear bored for fear of someone calling me stupid. Why do we torture ourselves so? I really have no idea but it is a hard habit to break this believing every word the general public tells you is the gospel truth. So often it is far from the truth. When you have Parkinson's, it is not long before questions start forming in the back of your mind about your medications and just your general care which leads to a huge amount of daily research and reading. While doing all of this, I have to constantly try to be objective and not gullible. It's a great blessing that these days never last more than a day and are usually preempted by extreme fatigue so if I do not fight it and curl up and sleep all day...I am cured. My guess God has a duel purpose for sending these days our way....rest for one but more important to clear the cobwebs out of the attic and clean up a little up there. I am sure a clean attic will bring on clearer thoughts and thoughts of value to others and not just me....So with that I will sleep well tonight and be up early tomorrow for Coffee With Me....love Pokie

How's your garden going?

When Joe Parkinson's came knocking at my door four years ago this is the thing he stole from me that hurt the worse.....my ability to put out and maintain a beautiful and weed free garden. There is not one thing about gardening i don't like except deer flies and deer ticks. Deer flies can be stopped with excessive bug spray and deer ticks can be detoured but not stop ed by long sleeves and long pants with duck tape wound with the sticky side out. You'd be surprised how many of these pests you can catch and dispose of this way except you could have died of heat stroke today with all that on since the heat factor was 108. I have passed my garden spot on to my son-in-law and his friend. Tonight they brought me cabbage and they are picking green beans, peppers and cucumbers. When the tomatoes come on in full force, the freezing and canning starts for the winter. All my kids and I have a deep freeze and I freeze more now than can. The weekend I will be going to my first class reunion. It not theirs but mine. The first I have attended in 45 years and my home town is in the boot hill of Missouri which is peach country this time of the year. So, on my way back , in request from my grand kids, I am to pick up "forking peaches", which is peaches in heavy syrup in a easy to hold on to container because you eat them while still frozen with a fork in little pieces. Gives you brain freeze every time but they love them. Joe thought he had really pulled something off when he made me exit the farm chores I have always loved so much but little did he know he can't take them away from me. on my last days the memories will still cause my eyes to twinkle and shin...love Pokie

Tweety Bird is Sixty Today

I bet you did not know this useless little bit of information. One of my friends from 45 years back sent me a picture of Tweety on a perch looking quite forlorn indeed. The caption was " I tawt I saw a pussy cat.......Oh hell I don't know what I saw" and I thought though I got a good laugh out of it ....how true. I have no idea any more what I'm seeing most of the time. I understand little of what my grand kids are saying and nothing if they text me. I look at television and can hardly believe what I think I see and wonder just how much further it can go. Just as a passing note I liked the Biggest Loser without the bleeped cuss words.....and I would not want anyone talking to me that way....400 plus pounds are not. The government keeps saying we need to get back to basics, but is it still out there. My grand kids would not know basics if they came up and slapped them one. With most banks in America striking me as crooks, what happen to the nice place you went to on Saturday morning to deposit your check and everyone knew each other? A good conversation was had and you left with a smile on your face. So many of the memories I hold dear are becoming something I can not even relate to my grand kids. They have no time and don't want any. Well this is the ramblings of a Tweety Bird Fan from way back who sure did enjoy those days that I can only shut my eyes and dream to remember and have. love pokie

Puzzles, Puzzels Everywhere....

When first diagnosed with Parkinson's I found doing jigsaw puzzles helped me get past the pain in my legs. In the first two years I did thirty some odd puzzles. Some were small with tiny pieces and others were large 1000-2000 pieces. The more complicated they were the better I liked them. Jane Wooster Scott has always been my favorite. As the puzzles piled up, I found I could actually do a 1000 piece puzzle in two days....laminate it and have it hanging. You see people with Parkinson's and particularly those on Requip often become obsessive and gamble or whatever, I did and still do puzzles. Is compulsive behavior when you know you are doing it? Every one I know has at least one of my puzzles. I have one whole wall dedicated to my puzzles, from ceiling to wall.Now this week I have started a new project. I finished a puzzle called "Grandmothers Kitchen" which showcased a 30's kitchen and all the antiques that went with it. As I was putting this puzzle together, I decided to redo my kitchen and showcase my antiques......Now we will see how long this project takes. "Parkies" are known for procrastination, obsession and fatigue. I wonder which one will get the best of me.....love pokie

Confessions of a Happy Heart

While I have been recuperating and tying to loose my case of apathy I read one of the best books I have ever read and I am passing my thought on to you. The Shack Buy this book and read it and pass it on to a close friend or maybe an enemy you should make up with or someone who has had a profound loss and is not coping well. I have never read anything like this book. I started out thinking I could not read this...it was too depressing and all of a sudden it takes a turn and I could not lay the book down. I will not tell you anymore except I know you will love it and after reading it I hope you become part of the "Missy Project" and make it your project to spread this book far and wide. You may learn more at theshackbook.com. There is "Willie's Blog" and you can talk to the author, share your feeelings and discuss your feelings on the forum. Good luck and enjoy this new masterpiece...love pokie

$12,000.00 for Research!

New York City put on such a welcome for Parkinson's this week end and got the attention of the world for sure. Team PLM contributed $12,000.00 in donations accumulated since January 1, 2009. As a team of 29 members, what a show we made. The sun was shining and the park was full to the brim with New Yorkers on a holiday. My daughter and I arrived with Dixie and Cherie about nine am and things were already busy. The stands were set up and people were hugging and crying in an air of love. Yes we or our family member had Parkinson's but we were pushing it back and it was not in control of us or the day. I was so proud of my fellow PLM-ers. I met many from PLM and Facebook and the Unity Walk Staff. There is nothing like the thrill of meeting someone you have spoken to for months and then you see them in person. Pictures and interviews were being taken everywhere. WOW. And the Lady...Our Quilt....She came in in grand style and made such a hit. after all the photo shots, I took her to the National Parkinson Foundation Tent and they hung her up for all to see the rest of the day....Everyone was talking about PLM and it's "Quilt Angels" More pictures will be coming and many more words about the experience...It was awesome love pokie

Just Ramblings

I took a few days off to get energized again. I seem to need that more and more lately. So many really neat things are happening and it is truly unbelievable that just a year ago I entered this totally visable world I am in. When I recharge I get completely away from the computer and go to my son's and take care of my five month old grandson Ayden who I nick named "Little Jesus" It seems after holding him and him touching my face with those chubby little hands, the world has new dimension and meaning. This morning I was awake at 4am, sitting at the kitchen table writing something that was going through my head and heard him singing in the bedroom, all by himself in the dark. I quietly snuck in there to see what he was doing and there he was in his crib with the street light dancing merrily across the wall. As soon as he saw me he held out his arms for me to pick him up and we ventured into the living room where I had his bottle waiting and we snuggled down in the recliner with him pulling the bottle out every so often just to look up at me and make this little love sound. There is no way I will ever be able to explain what this does for my state of well being.....There are no words for that smile. This is what I was writing when he woke up: A "quiet moment" just entered through the garden gate He's standing in the corner so reaady to play,..... but waits He comes to visit sometimes as a messenger for a thought. Or he storms in like an angry child---Demanding and screaming for some slowness in my walk.. He's a very knowing friend I enjoy his company so. He knows me better than many do. Though sometimes our visits are few. I'll leave that garden gate open just so far today. To encourage him to come in and guide me on my way. For without his daily visit, I'll surely never win.... " Confussion" and " Just Plain Tired" They come to play instead, Which leaves me no time to contemplate the things I've really said. So as the day progresses and I play with all my friends, The evening comes quite quickly. My body needs to mend. So off to sleep I go with meds and phone in hand. Praying quidance in this journey, that never seems to end And thanking God this day for all my firends That came along to play ...... pokie 11/2008

such special times

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