Tuesday, July 30, 2013

HEALING WATERS

I'd like to tell you about 24 hours I spent with someone who was was not just a friend, when we were growing up, but a constant companion. We were the Rodney Vista Gang and loved and depended on each other daily from the late forties til the late sixties. Then came graduation from high school and the Vietnam War and drafting. In 1968 all our lives changed forever as did so many who were called to serve our country and suffer the consequences. If they were not physically scared, they were haunted hourly with mental problems that no one understood and now some forty years later, they are still suffering, Sometimes it seems no one cares and surely there is no use to carry on BUT THE USE IS...friends need each other and need all the love we can exchange. Now on to PROJECT HEALING WATERS....someone along the way realized Russ Doughty had a need and a nack for this project. Be it a normal person or God they were right. He has been fishing all his life and tying flies for fifty of his sixty plus years. He is and has been a tortured Vietnam Vet since 1968 but yet after and under all that is the sweetest, gentlest man I have ever known. July 25th I traveled six hours to Springfield, Missouri to set in on one of his tying classes at the huge Bass Pro facility there. I am so glad I did because me, Russ and three other vets instantly hit it off and the love flowed. I witnessed, first hand, a natural teacher with non natural students succeeding and as they did in their own intense way, they were laughing and joking around...BEING CLOSE FRIENDS. There are 130 or more clinics and hospitals operating under the Department of Vietnam Affairs and Department of Defense and the PROJECT HEALING WATERS is non-profit..They offer fly tying training, rod building and fishing outingsl free of charge. Whaat a wonderful way to make someone feel loved, needed and useful again. You will be hearing more from me on this subject, I would love to be a member and yes, I would travel six hours for a two-three hour visit with these guys. Thanks to Bass Pro for giving the perfect place to meet. I am not a vet but I am disabled and I loved it.There will be more to come and Vets, look for this in your area or start one on your own. Contact OR PROJECT HEALING WATERS FLY FISHING, INC....P.O.Box 695....LaPlata, MD...20646. It is a 501 (c)(3) non profit GIVE, GIVE, GIVE
RUSS LOVE YA ALWAYS, POKIE

Sunday, February 10, 2013

Amazing Grace (My Chains Are Gone)

Amazing grace how sweet the sound that saved a wretch like me I once was lost but now am found, was blind and now can see. Twas grace that taught my heart to fear; and grace my fears relieved. How precious did that grace appear the hour I first believed. My chains are gone, I've been set free. My God, my Savior, has ransomed me. And like a flood his mercy reigns, unending love, amazing grace. The Lord has promised good to m His word my hope secures. He will my shield and portion be as long as life endures. My chains are gone, I've been set free. My God, my Savior, has ransomed me. And like a flood his mercy reigns, unending love, amazing grace. The earth shall soon dissolve like snow, the sun forbear to shine. But God who called me here below, will be for ever mine, will be forever mine, You are forever mine.

Friday, July 27, 2012

Hog Money

A dear friend sent me a copy of this letter and I thought it very worth while to pass on to the readers: Dear sir: My friend Billy in Missouri just received a check for $987 from the government for not raising hogs. I want to go into the "not raising hogs" business next year. What I need to know is what is the best breed of hogs - not to raise? I want to make sure I approach this important work in keeping ith all government policies. I would prefer not to raise razorbacks, but if tht is not aa good breek not to raise then I will jusst as gladly not raise Yorkshire or Durocs. What do you recommend? As I see it the hardest part of this government program will be keeping an accurate inventory of how many hogs I haven't raised. If I get $987 for not raising 50 hogs, will I get $1974 for not raising 100 hogs? I plan to start out small. at first, holding myself down to 5,000 hogs not raised. That should make me $98,700 for the first year. Then I can afford an airplane. I have another question. These hogs I will not raise will not eeat 90,000 bushels of corn. I understand that you have a program that pays farmers not to grow corn. What size of a payment can I expect for not growing 90,000 bushels of corn that I won't need to feed to the 5,000 hogs that I am not going to raise? This estimate pf potenital income is needed so that I don't exceed the level the president has set - where I become a rich person and my income must be redistributed. I am also considering the "not milking cows" business so send me any information you have available.

Sunday, July 15, 2012

Gods Day

Bath taken, hair curled, clothes layed out for church today and I cannot wait. Sundays are that special to me. We laugh and we hug I am with friends and God smiles. I have no pains or problems in his house. And though sometimes I cry, they are always tears of joy. He has taken me dowwn so many roads and always done so with a gentle hand in guidance. He has made so many changes in me in the last two years or should I say he has allowed me to face myself and make a change. Sometimes life scares me and when that happens I EAT. It's a buffer to keep the world away BUT God just keeps saying,"Come on, you can do it." and I have found in time with all I have in me...I can make it because I BELIEVE. For this and my many other blessings I am thankful and give thanks. Once again my rest is done. The journey must begin again . The map is in my hand. Through my resting and turmoil my friends have been right there, often just to listen to my questions......why, why, why is always the question....Though they are spread all over the United States, they are always only a phone call away....I am so blessed. To all that read this rambling, I wish you health and happiness on this Sunday, GODS DAY......Love Pokie

Thursday, December 29, 2011

2012

I'm taking no risks this year when I usher in 2012. I'm crossing all the T's and dotting all the I's. The world is in bad enough shape without me forgetting something like black eyed peas New Year's Day and salt over the shoulder. If I had a "Blarney Stone", I would kiss it. Hopefully, by this time next year, I will be a lot lighter and have gained more movement and less pain in my arms.I have been told that if I can't see it I can't achieve it. I can both see AND taste it. Somewhere there has to be a way to stop the progression of this disease.....with every taste of success, it takes something new away. It's rather like a spoiled little kid at play saying, "If you don't play my way I will go home." I would love to say to the bully, "Go on home, I don't like you anyway." but I just would view that as giving up and something deep inside me will not let me do that. Sometimes I feel a rush of total fear when I step off a curb and my ankles pop or feel stiff. I almost scream this prayer..."Please Lord not them,too"..After both knees and one hip and now the shoulders....I am I am running out of doctors who believe I will recover. The eye opener this year was when a surgeon told me he just wouldn't try it because he didn't believe he could increase my range of movement that much...Does he not realize that anything is better than nothing? I watched a lady on Dr.Oz say she would like to die because she could no longer lift her arms and she was in a wheelchair. Well my surgery is the last of March and I BELIEVE even though the thought of recovery time makes me sick at my stomach. I look at it this way, though. If God hadn't wanted me to try it, He would not have presented it to me.....This has turned into something far more serious than I wanted. I KNOW that 2012 will be an eye opener and a cure will be closer than ever before. Years ago there was no such thing as a reverse cup shoulder replacement. Now that is the thing for PD patients...so off I go to "meet the wizard, the wonderful wizard of OZ" Have a wonderful New Year and may you be ever so blessed in many ways and please don't forget to give thanks to your creator...love ya....Pokie

Sunday, December 11, 2011

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

Sunday, December 4, 2011

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

Friday, December 2, 2011

Take Five With Your Maker

Never take a day for granted!  They were meant to be enjoyed.  God gave them to us as gifts and no matter our circumstances, something will happen in that 24 hours that gets your attention and spurs you on.  The smallest of things are blessings and it takes many small things to get us ready for a big thing.  Twenty three days until the day the western world celebrates his birthday.  But whether you celebrate Christmas or Hanukkah or any other celebration of His life....don't wait until once a year rolls around....do it daily!  Just like having a caramel mocha coffee at "Mickey D's", take five with your maker.  Just as you need to feel appreciated daily, so does he.  This is what my friends call "Pokie on a Soapbox" and while on that box I am proclaiming this and everyday a gift from My Maker.  Take a deep breath, slow up and look to the heavens and say.......Merry Christmas and Happy Birthday, Jesus......Thank you
Lord...............
This is my prayer for today:   Dear Lord, help me to feed my many hungers and heal my right brain.....THANK YOU, THANK YOU,THANK YOU.  Amen

Thursday, December 1, 2011

New Roads With Old Friends

 One of my friends had ankle surgery today in Colorado.  I have thought about her all day.  Knowing she was tough, I knew God would guide her to a good end.  He did and she is at home, ahead of a snow storm and quite happy (so far)  with all she came in contact with.  She has already had DBS surgery and had some real scary times for awhile. I am wondering, in all this, if doctors in general realize just how tough you have to be to have PD.  You as a patient face constant rejection from people who don't understand you and don't want to take the time to understand.  No wonder we find so much backing on the Internet in friends with the same problems.  You soon learn you are the only one you can depend on and on some days, you are "iffy" too. I now understand why God says everything comes full circle in life.  I use to appreciate color but nothing like now .....yellows glow. as does sunshine....A kiss is never in passing, it's with passion as if were your last ......teddy bears are to sleep with again.....and fuzzy blankets really get softer and softer...No glance from someone goes unnoticed.  And any loud noise is confusing and disturbing  when as an "old hippy" many hours were spent in very loud musical events. I have wasted so much time yet have accomplished so much .  One of my prouder accomplishments is my family which I raised on my own and never thought another thing about it.  Now I see how many things I thought were so important didn't mean a thing and a lot of the very important things I didn't see until much later.

  Now I must muster all my strength and beliefs and start again.  I feel God is asking more of me than I know or will know for sometime.  I must just proceed in blind faith and listen to what he says...INTENTLY.....We are never to old to travel a new road with old fiends ...Wish me well in my new adventures as you will see even more of me than before....but maybe a little wiser and faster..love ya pokie

Monday, November 7, 2011

BUT HOW LORD?

Once again in my life I feel the need to try and dance. This feeling often has gotten me into trouble and it could do that once again. I feel the need to get off to myself and re-establish a relationship with the inner me that thrives on constant contact with My Lord. I have had this nagging feeling for over a year that God wants to move me. I don't seem to be able to concentrate and there is something inside of me I need to write or say. I may be listening too hard to hear what he is saying. Since October of 2007 I have written poems, stories, letters ,songs and just nonsense about my life and feelings. Sometimes happy thoughts and sometimes sad but always lots of thoughts and then all of a sudden I turned inside and closed up. This probably seems very unimportant but I WAS making a difference and people were listening. I knew what it was to be in pain, or need a friend.......I was there. I still have those days but somehow feel like I am not suppose to. My ability to turn the other cheek when criticized, has decreased to the point that I often just feel like I need to give up and stop fighting. This is so not me and has never been me. Often in the bottom of that bucket, I can find so much self pity that I feed on it for days, knowing full well just how very blessed I am to even be walking. This is not a terminal feeling simply because I will not let it be. I have always thought that the cure for many neurological disorders lies in the understanding of Parkinson's. The trouble being......each one of us is so different from the next and they(doctors) have always wanted to say "Ah, PD take this and get over dreaming it's a down hill road and your doomed." No, I refuse to believe it though I do know that you seems to get through one phase and the next one comes on full blast.....Will I be able to work my way through this? Who knows...Only God. I can hear him telling me that he makes the decisions and I am suppose to give up when he tells me the dance is over. I really don't know but feel by Christmas I will know.....My life has been such a miracle each day lately...how can I doubt and doubting I am not ...BUT HOW LORD......surely with faith...... love, pokie

Wednesday, October 12, 2011

TEN FOLD

How many things do you return home to at night that really, REALLY care? If your lucky it is a sole mate who greets you with a smile and loves that special feeling only you can bring into their immediate surroundings. Some of us are not lucky enough to have a soul mate or have lost them somewhere along the way BUT have an animal of some sort who seems to think their life begins when you walk in the front door. You never get to old to feel this love and when you cannot find it, that is true loneliness. My cat, Boo-Bear has been with me for several years and honestly believes I am his, since I am all he remembers. My granddaughter brought him home to me when he was half the size of my hand.....I never thought I would save him since he barely had his eyes open. Now years later, he is a huge tom cat. He delights in greeting me by jumping on my chest when I sit down and putting his long arms around my neck and purrs this congested kind of purr and closes his eyes in bliss as I tell him I love him and put him down. I have been fortunate to have always had someone or something around to welcome me home this way. Your kids and family do this in early years but as you get older and the world speeds up and we slow down, they never seem to be there or have their own tight circle around them. Some of us or so fortunate to know that warm feeling from a very close love one and some of us or not. Some take that some one for granted or just never cared in the first place and end up just living for the convenience of it all. I think the statement is sometimes made, "It's too late to change or what's the use." There is always a need to strive for the best whether you are 60 or 20 or 90 0r 40. That cat will never be left behind in a move. Just as in moving my family will not be left behind.....I'll always be there to listen.....and that sole mate .....I will never be too old for a hug or to hold hands whether we are walking or not. My thought in all this rambling is.....if you have that special connection hold on to it.....God presented it to you. If you are alone get out and be there for someone else......what you give will come back to you ten fold. Love you always, Pokie

Preview Episode 2 of Why Quilts Matter: Quilts Bring History Alive

Preview Episode 2 of Why Quilts Matter: Quilts Bring History Alive

Sunday, October 2, 2011

TIME

Could it be that my brain has forgotten how to rest? Only when I try to rest do I have tremors and shakes....In the old days did they have shakes? Were they worse in the span of time between lying down and sleep? And, what about when you do sleep? Does your brain wait for you to rest so it can throw in weird dreams to wake you up? Do you lie there and refuse to open your eyes.....thinking you might go back to sleep, but soon realize your up for the rest of the night or early morning. Do we get going so fast in life that we cannot slow down to rest, dream, talk to God or listen to what he has to say to us? Why are we doing this to ourselves? I have always "hit the floor running" in an attempt to feed and cloth three kids as a single mom, for what seems like all of my adult life. Now retired, and the brain gives out. Sometimes, in physical therapy, I just have to say, "My brain just doesn't know how to do that.".....I now spend hours trying to reprogram myself to bounce a ball from one hand to the next....remember the punch line to a joke....or the whole joke! I have never been an athlete but, bouncing a ball I could handle.....I stop myself and say,"Don't limp and stand up straight." AND the miracle is I can......I CAN. What are the researchers missing? I know I am a bundle of questions tonight, BUT I now rely totally on Ivyprophen for pain, warafin to thin my blood, fish oil, B12 capsules and prozac......that's it from 42 pills a day to two prescription drugs...these are some things sent to me today by email...they made sense: STOP TRYING TO FIT IN WHEN YOU WERE MEANT TO STAND OUT! WHEN ONE PERSON DREAMS ALONE, IT'S JUST A DREAM...WHEN MANY DREAM TOGETHER IT IS THE BEGINNING OF A NEW REALITY! IF YOU HAVE ENEMIES IT MAY JUST MEAN YOU STOOD UP FOR SOMETHING SOMEWHERE ALONG THE WAY. This one I worry about.......YOUR SOLE PURPOSE IN LIFE MIGHT JUST BE TO SERVE AS A WARNING TO OTHERS!..... A TRULY HAPPY PERSON ENJOYS THE SCENERY ON THE DETOUR.........me, I enjoy ANY scenery!(or for that matter detours are ok too) and last but not least............SOME MISTAKES ARE TOO MUCH FUN TO MAKE ONLY ONCE! Well obviously, my unprogrammed brain is scrambled like eggs tonight ...so I will wish you peace and contentment and GOOD DREAMS! LOVE YA POKIE P.S. If someone whom I love alot, is caught reading this and realizes I have once again used SPAN instead of SPAND....Goggle told me to do it...goodnight

Saturday, October 1, 2011

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

Thursday, September 15, 2011

"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

Saturday, April 16, 2011

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

Sunday, February 27, 2011

The Record of Our Lives

Take care and watch yourselves closely so as neither to forget the things that your eyes have seen nor to let them slip from your mind all the days of your life; make them known to your children and your children's children....Deuteronomy 4:9 This morning I woke up to a dreary day and really considered rolling over and going back to sleep when this voice came to me saying...."I was there for you, will you not be there for me?" and to that I jumped up and dressed for church and noticed I was functioning with no limp or pain. An hour later I was at my church of choice and looking through the free reading material in the foyer and picked out several for prayer help in the coming Lent season. I ventured into church feeling ex tactic, for some reason, just to be there. Three months ago I had my right hip replaced after almost ten years of increasing pain. Most doctors said I would have trouble healing because of my other ailments(Parkinson's, Epilepsy and RA) but I had no choice if I wanted to walk. I was primarily in a wheel chair and the pain was ten and above on all days. So all seemed to be going well until six weeks to the day after the surgery it slipped out and I was in a brace and pain once again. Needless to say, depression set in in a big way and I dropped out of sight. Had it not been for my lover and family and friends I may not have made it back. Friends came from all over, Facebook, Patientslikeme.com and my blogs to lend me moral support. I continued to ask God, "How could he possibly be setting me up for a new life and adventure in this condition?" I would pray and read my Bible daily and both assured me I was being lead just go with it, This morning, at church, the first thing I read was the passage from Deuteronomy and it all connected. Next I opened my email and found a email from : http://www.healthcaretechnicians.org/removing-the-mystery-top-49-blogs-about-parkinsons-disease/ Me writing a top 49 Parkinson blog......thank you, Lord. I had never been on the Internet before October of 2007 when I signed on to Patientslikeme.com. So now I am back and am happy to be so.......May we find a cure to these diseases and neurological disorders. We can only do that through speaking up and being heard. Love Pokie

Friday, December 17, 2010

Joan Baez - Forever Young

Happy Birthday Woodstock.....what a trip!!!!!!!!

Happy Holidays.....

Here we are, so few days left til Christmas and, probably, so much to do. The weather in Illinois is not co-operating in any way for someone with a new hip. The nineteenth of November I had my right hip replaced at Barnes Jewish Hospital in St.Louis by Dr. Nunley and his staff and I can only give them all of my thanks and love for a excellent job done. I was out of the hospital in one day and have never looked back. God has given me a new chance to see His world and do His work and I SHALL DO BOTH. Exercise and healthy food and loyal support has brought me this far and I look forward to the future, MY FUTURE, as I have not looked forward for years. I would be lying if I told you I have no pain, but it is in different places and for different reasons. I now exercise at least an hour a day and though I have never been high on exercise, I can see and feel it's results. I now have one very strong leg and one with PD.....two arms with very little strength in either and a back that could go at any time. With PD, arthritis and epilepsy, this could be screaming"Go to bed and stay there." I refuse and so does someone who loves me very much. I want so to walk upright and shine in his and God's light. The main pain now is upper body and so stretching and arm pulls are ever so important and THEY HURT doing and after but some day they will no longer hurt and a I will be stronger...I would love to do what "Ellen" does when she sits down. She holds herself up by her arms for just a moment. Now granted, she is much smaller than me but, this is my goal and I am keeping it. In the middle of all this jabber, I would really like to wish yo one and all the happiest of Holiday Seasons and hope you all know I believe in your ability to fly no matter what chronic disorder you own and try to live with. Peace and Patience, my friend.....and Hope for the New Year. Love Pokie

Thursday, December 2, 2010

Continuing Success

The "Wow Days" just keep on coming. I am just totally blessed and ever thankful to My Maker for his trust in my abilities and persistence in leading me on to higher ground. Just when I think I can not possibly climb one more mountain successfully, the challenge is made and I succeed. I have battled walking for over ten years, and was continually told surgery was just to risky and why would I go through it anyway because people with Parkinson's don't heal well, people with Epilepsy seize under surgery and pass on and besides that your going to be in a wheel chair anyway......Well, bull. November 19th surgery to replace my right hip after having both knees replaced five years ago and today, not two weeks later I have 21 staples removed and am walking beautifully with a cane. I have already walked one half mile at the gym yesterday and the incision has no drainage or swelling and is completely closed. Yes, I have goals and high ones and I am bull headed but it can be done and I am and will continue to be living proof you can live with PD with Quality of Life.....IF YOU FIGHT AND FIGHT HARD. I am by no means doing this on my own. My Lord and Savior has been prodding me like an old mule for quite some time. My friends from everywhere have called daily and kept me continually in their prayers and my doctors.......THE BEST. Barnes Jewish in St. Louis, Missouri, Dr. Nunley and his staff, Dr. Max Benzequen and staff, home care and physical therapy have all given me a new life to say the least and I have no idea of throwing it away.....So many new opportunities have opened up just this week that every day from now on will be jam packed with service to My Almighty but pursuit of a cure and help for chronically ill patients everywhere also. Thank you again everyone. Love Pokie

Saturday, November 27, 2010

Let The Game Begin

"Send me in Coach, I'm ready to play....November 19th I entered Barnes Jewish Hospital in St Louis, Missouri for a total right hip replacement. I had weighed this in my mind since 2006 when I had my second hip replaced and was diagnosed with Parkinson's after a very slow recovery and many malfunctions, but as the pain increased weekly and my quality of life dropped to zero, I went for it. I cannot put all the decision in my hands though. In late July I was working on my bucket list so I could check out in style, feeling God would surely only put me through this, at most two more years. Nope, along came a friend who PUSHED me to fix myself as best I could...Exercise and don't give up because there are a lot of people who still love you......including your Lord and it's time to accept the next challenge. As I said that day I was in surgery by 8:00AM and out by 11:00AM and home by 6:00PM the next day with very little pain and have walked since...much to my amazement. Thanksgiving was just unbelievable this year......to say the least. My doctors and nurses were great as were all the people praying for my recovery and my friend and family by my heart and side always and then My Lord,who made fear something not considered and strength and faith, the strongest ever. I am sure I am once again on another mission. Look out chronic diseases with never ending pain, I am being put back in the game so LET THE GAMES BEGIN. love Pokie

Monday, September 20, 2010

Good Morning Sunshine

Once again I have taken a sabbatical from blogspot and ventured out into the real world. As scary as it seems and may have been from the very first step, it is "farout". How often in life do we choose to sit out the dance and loose so much? Life can become so dull and love can be missed at a time when it was needed more than ever. Just because we made a judgement call in our earlier years. Maybe with age comes the wisdom to attack it again and succeed this time and the pleasures be many times doubled. Who knows, it is all in God's hands. September and October are always big months in Parkinson's and this year is no different with the PD World Congress and YOPN Conference. Please don't let your illness define who you are. Get out and show the world who you really are.....enjoy. love Pokie

Saturday, August 28, 2010

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

Friday, August 27, 2010

ALS TDI

Two days ago I traveled to St.Louis, Missouri for one of the most informative and interesting seminars I have been to in some time. I dawned my Patientslikeme.com shirt and drove to a meeting on ALS. At this time not knowing what to expect but always wanting to learn about Neurological Disorders and know this is the one place to go for straight answers. Why me with Parkinson's? Because I have found diagnoses change and what applies to one Neurological disorder often applies to another. So many of the symptoms for ALS and MS show up in different forms of PD. The title of the seminar was "Brick and Mortar" Non profit B iotech's Opportunities for Preclinical Drug Development. The statistics are staggering...30,000 patients in the U.S., 5,000 plus every year...Those diagnosed have a 50% mortality rate in 18 months and some 20% survive 5 years. This disease can be sporadic (90%) or genetic(10%). Thank heavens if you are diagnosed with ALS you have a wonderful place to go for clear and caring information for both you and your caregiver by going to . ALS TDI focuses on two things molecular mechanisms of disease onset and progression and therapeutic development.ALS-TDI was founded by The Heywood Family in 1999 and has an annual budget of $10 million with 42 employees and 25 full-time scientists. The driving principle behind all of his is: To combine power of a 501(3)c non profit with the best practices of a for profit biotech or pharmaceutical company in the hope that the productivity gap will be breached and a cure or better treatment found. If you are interested and you should be. check out the ALS Forum: The largest Online Discussion of ALS Therapeutics 3,000+members 40,000 posts Topics include Therapeutic and Clinical Trials to living with ALS and Advocacy. All of this comes with the chance to be anonymous, open to the public and it's FREE. Let me give you some numbers and sites and you check it out: Questions and Comments? info@als.net 617-441-7200 or www.als.net/forum or Patientslikeme.com

Sunday, August 15, 2010

Tuesday, August 10, 2010

Not Raising Hogs....

A very close friend sent me this today to pass on to you: Dear Sir: My friend Bobby, in Missouri, just received a check for $987 from the government for not raising hogs. I want to go into the "Not Raising Hogs" business next year. What I need to know is, what is the best breed of hogs - not to raise? I want to make sure that I approach this important work in keeping with all government policies. I would prefer not to raise razorbacks, but if that is not a good breed to raise, then I will just as gladly not raise Yorkshire or Durocs. What do you recommend? As I see it the hardest part of the government program will be keeping an accurate inventory of how many hogs I haven't raised. My friend Bobby is optimistic about the future of this business. he has been raising hogs for thirty years, and the best he ever made was $392 back in 1994---until he got your check for the $987, for not raising hogs. If I get $987 for not raising hogs, will I get $1974 for not raising 100 hogs? I plan to start out small, at first, holding myself down to around 5,000 hogs not raised. That should make me about $98,700 for the first year. Then I can afford an airplane. I have another question. These hos I will not raise will not eat 90,000 bushels of corn. I understand that you have a program that pays farmers not to grow corn. what size payment can I expect for not growing the 90,000 bushels of corn that I won't need to feed to the 5,000 hogs that I am not going to raise? This estimate of potential income is needed so that I don't exceed the level the president has set--where I become a rich person and my income must be redistributed. Also I am considering the "Not Milking Cows" business, so send me any information you have on that program. In view of these plans, you understand that I will be totally unemployed. Therefore, I plan to file for food stamps and unemployment. Can ACORN help me with these applications? Be assured that you will have my vote in the coming election. Politically yours.........

Wednesday, August 4, 2010

Making the Most of Everything.....

I know everyone if so tired of hearing about the economy and how bad things are. I am more tired of hearing how the government is going to fix it for us. Why must we wait on them to spend more of our money and we reap less return. I am not talking finances but I am talking things we can do for our own well being and contentment that can make a big difference in our lives. We as Americans have so much and for some have Had so much and are losing it. Take a look around you. Say you are a senior citizen, in a small apartment on limited income and see few visitors. I will call you Jane for today. Jane has a sunny window in her living room that faces nowhere but the sun. In front of that window Jane could position a small table and saving fast food containers or other containers that holes can be punched in the bottom for drainage. Scavenger up some dirt from areas around you. It won't take much and if you drink coffee ....save your coffee grounds. get you some cheap seeds. They are being marked down now..thinking the season is over BUT you can play around with this all winter. My mother saves a salad tomato plant all winter last year and we enjoyed fresh tomatoes ever so often. Try lettuce and onions, herbs maybe some small flowers. Nurture these plants and their surroundings and when you harvest for a meal, make it a special affair. It's only Jane in this apartment and I have it on authority she talks to her plants and waters them daily, in return they keep her busy year around. If you have excess for one, freeze it and take it out later for soup. My grandpa use to tells us to pull up our boot straps which coming from him meant "toughen up and make things work for you." I know this is sorry times for seniors and many, many of my friends are suffering daily. But we baby boomers come from good stock and can make good if we set our mind to it. Don't be afraid to try. love always Pokie

Saturday, July 24, 2010

I Hope You Dance

I have been so incredibly blessed all of my life. Even in extreme hard times God has always made sure I knew I was loved and that everything was for a reason...just believe. It seems when I settle into a routine as I have with Parkinson's then he brings something else along to stir the pot again. A new friend or old friend, an idea that won't go away no matter how silly it seems and then there's my wheels. Not chair wheels, car wheels. since at least March or more I have been without a car and trying to get to doctor appointments for me and my mom and keep the household going. I did well until the last month and things begin to pile up. Missed appointments because I had no one to take me and I just wanted out...Out for a drive, out to be by myself....just OUT. Well today I did it. My car is here and I am ever so proud. The dealership has been very special through all this. I knew just what I wanted and they would get it and it would be gone or it just was a little not right. Well she is here. A beautiful pewter color with all the bells and whistles and I am "On The Road Again" It would have been so easy for me to give up this time. The pain is severe again and my walking is not as good as it could be but, nope, I figure I have another dance in me. If you are someone reading this who feels they have come to the end of their rope and there just is nothing else exciting that could possibly venture into your life....your wrong. When you least expect it, a change will be offered to you.....a chance to dance and I hope you do.....love Pokie

Thursday, July 22, 2010

Hard To Dance Without Music

I spent the night last night wandering the halls of the Internet checking the problems and joys of the World and am so disgusted at the treatment of America's Seniors. I am a senior at 63 and proud to be so. I have lived a very full and eventful life and now in the last quarter(as a friend of mine refers to it) you have the gift to look where you have been and the sense to fear what is coming. Some are lead to believe that that fear is based on dying, for me, not so. The fear comes from having to swallow every bit of your pride to beg for help and finding out no one is either listening or cares. You are a disabled senior, on a tight rope and no net below. Some already in free fall pray for death so the suffering stops.....not from pain but stress. A man is taught from day one to grow up and take care of your family, no matter what. He works his entire life thinking, I'll give this everything I have and when I retire I'll rest......WRONG. The American dream is no longer there benefits are being cut, insurance is being taken away, patients are taking their medication every other day because they can not afford it on a daily bases or are sharing it with someone who can not get it at all. That same grown man finds it har to support a family now but in his senior years find s no peace at all......the rug could be pulled at any time. In the rush to bail out Bankers who will never experience these problems, and bail out a failing economy, and put people to work....WHAT HAS THE GOVERNMENT AND SOCIETY DONE? They have taken the very foundation of the U.S.A. and disgraced it. In no other country in the World are the sick and elderly treated with such utter disrespect. When America's seniors are gone who will tell the stories and answer the questions. This generation and the one to follow is so busy the stories are never remembered and the events never happen.....and those SENIOR GENES. Those are the genes that will unlock what has went before for future breakthroughs BUT if a person cannot afford to buy his medication , he will skip doctors appointments and will not have that extra test that just might be the one that held the answer. I grew up under a very strict Scotch-Irish/Germany background. And the first thing I learned was to respect my elders ALWAYS. I'm so sorry but I see no semblance of respect in anything going on in America today toward seniors, disabled,un- insurable families.....Some of the answers on Patientslikeme have been this:
1. Wish i was smart enough to come up with a real definitive answer...but everything is just so screwed up....
2. If the gov't gets into many more things...we will be robots. Get up eat, go to bathroom, eat and sleep and keep your mouth shut..sorry. I can take alot of abuse and have in my lifetime but have never been able to stick with a liar. Once and I'm gone....absolutely no tolerance. That leaves me nothing in politics anymore....
3. How many are willing to get the power scooter and tell it like it is??? the squeakiest wheel gets the grease.......who squeaks the loudest????
4. where are the free clinics?
5. I lay awake at night trying to think of a way not to end up in a state run nursing facility where who knows what might happen to me.
In closing I can only pray for help for our Veterans that fought for nine years for agent orange benefits and the veterans coming home now with no legs and no arms to what. They fought for our rights and then our government takes them away.....Somewhere there must be an answer but only God knows where....love POkie

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