Wednesday, July 31, 2013

After all I've done for you?

How precious life is to me,yet I have no fear of dying. I hope all that know me realize my faith keeps me ever driven. God keeps me in perpetual motion. I am in constant search of something I have never seen...a new color, a new sound, a beautiful sunset or dawn. Parkinson's tries to slow me down and then I realize that I have no time for pain nor does anyone else have time to listen to me complain. My feet have never stopped in the last week and I LOVED IT. I covered miles all said I should not, overcame a new fear I have developed of driving in St.Louis by myself and most important I had conversations with people I should have talked to years ago. Surely in these conversations you take the possibility of hearing things you don't want to hear but when all is said, your life is richer by far. I would take this opportunity to thank Russ and Heidi for listening to me babble on. I have spent a week with two of my many VBF and feel the warm glow it has produced. Thank you Lord for holding my hand as I ventured on in discovering the art of being a better servant and also thank you for whispering in my ear once years ago, "After all I have done for you?" when I threatened to give up and go back to ya Pokie

Saturday, February 9, 2013

Life as a senior....

MY, my, will life ever quit changing for me, or is that the way it's suppose to be? I guess, really, I am waiting for something or someone to make it all better. Thank heavens God sticks with me through my trials. I have found so many of these trials are self inflicted. In the early stages of my disease, I would spend hours, days or weeks on one project and now an hour completely does me in and as I return to the recliner, my mind continues to work. I also now have REMS Disorder and so my nights are spent tossing and turning with very vivid dreams. It seems when I am visiting someone, morning coffee is completely consumed by chatter about my night before. I holler, scream, cuss and throw my hands around and never remember a sound. Quite often, I remember the dreams and usually enjoy them but any unfinished business from the day before is really given a work over by night. Once I visited a Neurologist who told me I was a "Neurological Mess". I never went back to see him again but now I realize just how right he was....and often it scares me.. As this disease progresses, I understand the need for a caregiver where before it seemed silly to sit and watch someone clean my house BUT I don't get any pleasure at all from cleaning...none. Cleaning and having a spotless house to display my things had always been at the top of my list. Clean is still at the top of my list but I would love to have someone else to do it. I've always had big sit down lunches and dinners and now nothing. No one can fit to much into their schedules anymore and most "fitins" are a duty not a pleasure. I think I was a little late in figuring just how life can be for a senior with multiple complications. Surely this is a question for me to ponder and solve or maybe just forget and go pokie

Friday, December 14, 2012

Oh Lord, Please Help......

Where do I start today? You see I happen to have a disease which is constantly fighting you and you can either fight back or give up and curl up on the couch. Don't get me wrong because I have couch days and sometimes two couch days in a row but then the stiffness sets in and I realize I NEED FRESH AIR. I am not sure fresh air would do it today. After hearing the news of the school shooting in Conn., I am physically sick. I have always attacked this disease and the other ones I have with a child's outlook. That outlook means you must not overlook the child within you and speak your piece. Everyone may not agree with me and I may not always be right, but I tried. Now I can honestly say I'm scared. What do I tell that grandson who is smart enough to notice the foam on the ocean and believe God put soap in there so we could stay clean?, How can his imagination grow if he is afraid? Oh please,Lord.....HELP US....I try so hard to remain upbeat and always spread a smile instead of a tear. This must stop. There is no time for innocence. These pre-teens know more than I wanted to know at twenty. I'm sorry but life is wrong if a child cannot be a child in safety. Love always, Pokie

Thursday, December 13, 2012

The Rodney Vista Gang

This writing thing is really weird. I have never in 65 years felt so compelled to pour my soul out to a very diversified audience. So much of my writing has been playing around with no real taught skills emerging.. Yes I did have fours years English in high school and more in college but, did it soak in? I was more of a "fun haver" than student. I'd appear with my hair just so, in just the right cloths and try desperately to look smart and not be called on. In the sixties, life was so much less complicated. I emerged an old hippy with great memories to grow old with. My aunt Dorothy always said I was the storyteller of the family and I trusted her judgement since she taught English all her life. Maybe storytelling can be inherited like all the rest of your genes and sooner or later they come to the surface to drive you crazy. Just as Parkinson's and RA hit me late in life, so did writing and when I die people will find reminders of me on envelopes and scrapes of paper everywhere. Tonight's collection of nonsense is about some very dear friends whom I have literally loved all my life. We grew up, next door to each other, in a very unique and never to be experienced again neighborhood. Without my friends I would have never survived. Me and four to six guys spent every waking hour of the day together. We wandered from house to house eating whatever each mother or grandmother would put out for us. We attended every vacation bible school in town. One week we were Methodist and the next Catholic.....just who ever would come pick us up and bring us back. We played outside til all hours of the night catching lightening bugs and playing hide and seek. There was no fear. We were safe in our own magical world. Most of the time we were barefoot but wanted for nothing. I never remember a reference being made to me being the only girl in this pack. All for one and one for all....rather like Spanky and his gang. I'm sure the independence and respect for another human being has carried us through many a trial as we grew older. Thank you guys for all the love you gave me then and continue to send my ya, Pokie

Tuesday, December 11, 2012

True Love....

This past Sunday, I got up at 5:30 A.M.knowing that a very special day was about to be had with my Lord. I arrived at church at 8:00, only two hours before the service was scheduled to begin. I had had a terrible week and my depression was not controllable. These weeks are view and far between for me. But once I was in this pattern I could not get matter what. I pulled up in front of our church armed with my Christmas tithe, canned food for the needy, box tops for the school kids and a heart totally full of questions. From the car, I all but ran to the front door and as I entered the door the smile came on my face. I could feel his hug and reassurance that all would be fine. I wandered toward the sanctuary trying desperately not to break into tears. The room was beautiful. Though the day was foggy and very overcast,the stain glass windows were absolutely radiant. They sent their beautiful colors into every corner. The tree was all aglow from floor to high rafters with white ornaments and millions of twinkling white lights. As I moved to the last pue, the choir began to sing and went completely through their Christmas Cantata with me as their audience. Minister Roger came in and sat behind me. I looked up to the huge wooden cross over the communion table and I felt the love and it was huge. One of the lines from a song was LET THEIR BE PEACE AND LET IT BEGIN WITH ME. And may I add let it begin today. There was a calm in my soul and my heart no longer ached with pain. I felt extreme love and his plan for me was once again clear. I WAS RENEWED. My church is The First United Methodist Church of Vandalia, Illinois. Don't wait for an emergency to bring you to her doors.Get up your courage real soon and venture in to find out what true love is. love, Pokie

Saturday, November 17, 2012

17,000 views.....thank you

Little did I realize that at this posting I have posted to this blog 299 articles in five years. My how time flies when life is pulling you onward. Since that faithful first post all those years ago, I have had both knees replaced, my right hip replaced, and last March I celebrated my 65th birthday by having my left shoulder replaced through reverse rotor cup surgery. Now eight months later I feel at loss. I feel the need to write but also feel the need for it to be pure and not used to further anyone or any disease group. I write for suffers of Parkinson. I write for persons who suffer from seizures, be they medically or genetically induced. I write for those who never have a painless day and we are talking severe pain. In this discussion I am not referring to individuals, like me, who are just trying to get the news out. I will never again,promote and work day and night for a group who takes the money I bring in for them and use it for padding their payroll. This is why you will always see me support the April Unity Walk in Central Park, NY. ONE HUNDRED PERCENT OF DONATIONS GOES TO RESEARCH. I have worked with them since 2009 and hope to go again this coming April. Yes for those who have ask I will try to do videos for your use. No I do not have guest writers on my blog. I will consider your article and send readers in your direction......This blog and "Coffee With Pokie" are my babies and the labor for birth has been hard and long. I could never have reached my physical or mental state were it not for, The Parkinson's Unity Walk, and my many friends and followers on Facebook, Twitter and just plain internet. Much to my amazement some 17,000 people have viewed my sites and I would like to thank you one and all and hope you continue to view my writing as informational and understanding. I pray for God's help to serve you well. Love Pokie

Saturday, July 21, 2012

In His Hands

So many years ago I lost a grandson at 10 months of age. He had never been sick and was the absolute apple of everyones eye. He went to sleep one morning and neveer woke up again....CIDS had claimedd another victim. No warning just pain left behind to fill an unfillable void. I remember every minute and what I waas doing that day and the thoughts I was 12:30 I was showing pictures of him to a friend and telling her all about him and he was proably dying....I in one place and he in another some two hundred miles away. The pain never goes away even though more grandkids have been born and those that were young then have grown up. I thought at that time, I could never get over that pain and struggled to fiqure out what God could possibly be trying to tell me. Then something like today happens and I know.....No person or living thing is a mistake in God's eyes. We are all put here with a purpose and timeline.....and we are alwayss in his hands. It is an awesome place to be and as a grandmother of six and Kane, I always want the best for them and my Lord is it.....In living through that time and the many illnesses I have survived since, the pain does not compare but it has helped me console many and the following years as they suffered and questioned their faith.....I pray tonight for all concerned in this...all across the nation. I pray for your healing and pray that you let people come to you through God to ease your pain........God has always and will always love Pokie

Thursday, July 12, 2012

Today and Yesterday

For months I have been sorting through my life and my families life. Pictures, clothing and ANTIQUES antique(me) sorting a life time. This could have been made much easier if my parents had not been horders. McDonald plastic cups, Arby salad bowls, peanut butter plactic containers, paper and plastic bags and it goes on and on. Mixed in with an array of STUFF, you might find, money, 22 shells,fish hooks,pictures and more. Am I doing this in one house? No,two! Never was a Christmas card or birthday card discarded nor an article of clothing. Clothing my brother and I wore in the sixties hang proudly in the closet waiting for a time to come when they will be in fashion again. It's not their fault(my parents)they grew up in the depression...very poor. Nothing in that time had only one life and was never discarded wheither it was chipped or discolored. As I carry a box of this and a box of that up stairs to go through it, I cannot help but wonder if the eighteen year olds of today have any idea what poor really is. Do they know the value of things from fifty to a hundred years ago? I fit into that bracket of fifty to one hundred and I wonder what value they think I have. Just when I want to step out to investigate and enjoy some of the things I pasted by to have my kids. I do not regret that move but I can no longer do three days work in one, as I did then. I can't lift in front of me and carry. I can't lift twice my size. Yes, I am old at 65 BUT I know my best friend (BF) has me right where he wants me and a I will survive. Be there no doubt, that best friend is my Lord. This is something I needed or I would not have been presented with it. I WILL sort through this and mail the assorted things from the past to the assorted people they first belonged to and I WILL feel that my mission is done and hopefully God will grant me another twenty years to thank him... It is a shame you get so smart so late in life. You see loves you should have stayed with, money you should have saved and roads you should have taken but I believe I am making My Maker happy. Bear with my moods through this because I am sure the old me is still in there. I can tell you that with the exception of 5mg warafin, I am completely drug free .....No seizure or parkinson meds, no diabetic or blood pressure meds...tylenol extra for pain and inflamation and vitamins....Thank you Pokie

Friday, December 9, 2011


What A Night! My all time favorite Bob Seger is in St.Louis tonight. I saw him in April in Indianapolis. As I was watching on UTube, I got so wound up I got up out of my chair and started to dance.....really dance. That's a first in oh, so many years. This was not slow dancing. This was "get it done" fast. Ok, I knew some things were changing with me, but I have been sitting here waiting for direction and it was here all the time. Almost two years ago I almost gave up on helping anyone with this terrible disease of Parkinson's. No one knew how I felt....I kept it to myself and struck out on my own. That is not all true because I had someone very close to me pushing me on. I can still hear him tell me, "Parkinson's does not define you....where is the person I know and love?" I had no idea. I was so tired of being used for one thing or another and no one really listening to what I felt. I was more than that person who got up in the morning, took my many meds and laid back down waiting for the four hour rush so I could get done what needed done then back to the couch exhausted. I started, after both knees being replaced, with the fact that my right hip was gone. Oh but you know PD people don't mend well. By last November I was in a wheel chair. Hip surgery and lots of love and I could walk, with a walker or cane a half lap at the gym. Everyday I was encouraged,at least once, to go a little further. Yes,love spurred me on but more than that, I really needed his acceptance. I just wanted to be able to walk, standing up strait, next to him and see him smile. Now a year later,I am doing a mile and a half and have lost almost one hundred pounds. Then I blog and Theracycle contacts me that they had read my article and they had got some NIH funding....Great this is what I believe in....then silence. Then tonight OUT OF THE BLUE a email from Davis Phinney Foundation on their new funding for exercise trials on PD patients. I pray and read constantly for guidance but I guess I am so hard headed I didn't see what was going on right under my nose. I had been to The Davis Phinney Foundation Seminar in Colorado in 2008 or 09 and then got tied up in other places and eventually burnt out. No one was listening to the patient....and each of us was so different. Ah, but tonight a fire has been re-ignited and I CAN DANCE.....ONCE AGAIN......more to come for Pokie ...............Oh, and P.S...Thank you, were right as always.

Friday, December 2, 2011

Extra Steps

I'm rather ashamed of myself tonight.  I had just one of those days and despite the weather being nice I slept....knowing full well that will keep me up all night tonight and grandma, who lives down stairs, will be hearing me as I try to tiptoe around above her. Tomorrow morning, early, she will be up for breakfast and coffee and I will be the bear on the couch.   No exercise is terrible for me.  I have to walk everyday.  Not just a moderate stroll, but a all out walk and sweat.  If I do not, I loose no weight or my weight goes up whether I eat or not.  Do not believe I enjoy exercise because for the most part I do not,  but I know I cannot stop or I will be bead fast and rapidly. walking in a gym(basketball court)did nothing for me so I switched to the park with much more success. I have never been athletic but every so often I feel the urge to run....I have not, but I bet I do and remember running is easier that flying which I would also like to do . On days when I am particularly stressed or down, I dream of flying when I fall asleep.  The wind is always blowing through my hair and I AM HAPPY. Well mainly I am rambling and my left hand is giving me a lot off double letters.  Take some extra steps for me tonight and I will take some for you and together we will battle and win against PD.   love ya pokie

Thursday, December 1, 2011


I have had an amazing journey in my mind today.  I really didn't think yesterday could be beaten but here we go.....We have had two days of beautiful sunshine in Illinois and that has always made me feel like God's pay back for my patience.  Yesterday I received an email from a gentleman representing THERACYCLE....Yes, "THE THERACYCLE" .  They have received recognition from NIH and they wanted my feedback on a cheaper model for PD patients.  The funny part is, I have been following them for over a year after seeing a PBS special on quadriplegics (Francesco Clark) who were using the Gygerrmed from Germany with great success. Neither machine could I afford. , but the theory was good...I will add more later, but check this out....   love ya Pokie

Tuesday, October 18, 2011

Tiptoe lightly

There are several areas I have on my mind today. I only ask that you stay with me as I wander through my thoughts....I am not really lost just have a lot to cover.
First I have discovered this very interesting web site media. It cost to enroll but they will donate one dollar to the charity of your choice and the site is full of games, emotions and very creative thoughts for the emotions we all deal with on a daily bases....There are different areas within the site ...Cancer, care giving and so, stories and mysteries and good information.
Next on my agenda is my granddaughter, Katie.. Several days ago she sent me this letter.I don't know where she got it or if she found it and added to it, but it touched me more than she may know.
"Yes I'm a girl, I PUSH doors that clearly say PULL, I laugh harder when I try to explain why I'm laughing. I walk into a room and forget why I am there. I count on my fingers in Math. I hide pain from my love one's. I say it is a long story when it really is not. I cry a lot more than you think. I care about people who don't care about me. A broken nail is painful. I try to do things before the microwave beeps. I listen to you even when you don't listen to me......and a hug will always help.......I'M A GIRL! and all that from a ten year old girl I am very proud of........
Next is the lead article in the Southwest Parkinson News..."CHANGING YOUR BRAIN" This works, I have tried it and it works. When our brains shut down a pathway, open a new pathway by repetitive action or exercise. I bounce a small ball, daily, from one hand to the other. My brain has forgotten how to play like this and just as soon, it will forget how to grip something and it will fall. I sit for a certain time each day just playing ball with myself and my coordination is improving. You will also see your walking and balance improve if you tell yourself to improve your posture and "stop those Baby steps." Try it and see.....I challenge you....." Use exercise as a psychological tool to help protect, repair and optimize brain function." BUT only you can do this for yourself...good luck!
The fourth thing is an article in APDA News letter St.Louis Chapter on "Medications to Avoid or Use With Caution" I was shocked that somethings appeared on there. One of the major standouts for me was hydrocordone since I have had two knees and a hip replaced and another is Xanex for sleeping.....he article was eye opening to say the least. It was authored by Joanna Hartlein, APRN, Family Nurse Practitioner.
Well all of this should keep you busy in your waking hours be they today or tonight......God bless and keep on going.......please.......... love ya, Pokie

Saturday, September 24, 2011


This will take me forever to type but I believe in it so strongly that I am hand typing it to pass it on. In all these years, I have never learned to copy and paste or cut and paste. A very dear longtime friend and I finally talked by phone last week and today she sent me this. I cried, as I am sure you will so bare with me, please to the end.

It takes a few minutes to read but I think you will enjoy it as much as I did. Wish I had done something like this years ago.

The yellow shirt, had long sleeves, four extra large pockets trimmed with black thread and snaps in front. It was faded from years of wear, but still in decent shape. I found it in 1963 when I was home from college on Christmas break, rummaging through bags of cloths mom intended to give away... 'you're not taking that old thing, are you?' Mom said when she saw me packing the yellow shirt. ' I wore that when I was pregnant with your brother in 1954.'

'It's just the thing to wear over my cloths during art class, mom, thanks.' I slipped into mt suitcase before she could object. The yellow shirt became a part of college wardrobe. I loved it. After graduation I moved into my new apartment and I wore the shirt the day I moved and on Saturday mornings when I cleaned.

The next year, I married. When I became pregnant, I wore the shirt during fat days. I missed my mom and the rest of the family, since we were in Colorado and they were in Illinois. But that shirt helped I smiled remembering that mother had worn it 25 years earlier.

That Christmas , mindful of the warm feelings the shirt had given me, I patched the elbow, wrapped it in holiday paper and sent it to mom. When mom wrote back, she thanked me for the 'real gifts' and never mentioned it again.

The next year my husband , daughter and I stopped at mom's and dad's to pick up some furniture. Days later when we opened the crate for the the kitchen table ,I noticed something yellow taped to it's bottom.......The Yellow Shirt! And so the pattern was set.

On our next visit home, I secretly placed the shirt under mom and dad's mattress. I don't know how long it took her to find it, but almost two years passe before I discovered it under the base of our living room floor lamp. The yellow shirt was just what I needed while refinishing furniture......The walnut stains added character.

In 1975 my husband and I divorced. With my three children I prepared to move back to Illinois. As I packed, a deep depression overtook me. I wondered if I could find a job. I paged through my Bible, looking for comfort. In Ephesians, I read, 'So use every piece of God's armor to resist the enemy whenever he attacks, and when it is over, you will be standing up.' I tried to picture myself wearing God's armor but all I saw was the stained yellow shirt. Slowly it dawned on me ..... Wasn't mom's love a piece of God's armor? My courage was renewed.

Unpacking in our new home I knew I had to get the shirt back to mother. The next time I visited her I tucked it in her dresser drawer. Meanwhile, I found a good job at a radio station and a year later I found the yellow shirt hidden in a rag bag in my cleaning closet. Something new had been added. Embroidered in bright green across the breast pocket were the words....I BELONG TO PAT.....Not to be outdone, I added an apostrophe and seven more letters. Now the shirt proudly proclaimed.....I BELONG TO PAT'S MOTHER. and then I zig zagged all the frayed seams and had a friend mail the shirt, in a fancy box to my mom from Arlington, Va. we enclosed an official looking letter from 'The Institute for the Destitute announcing she was the recipient of an award for good deeds. I wish I could have seen her face when she opened the box but of course she never mentioned it.

Two years later, in 1978 I remarried and on that day Harold and I put our car in a friends garage to avoid practical jokes. After the wedding, we were traveling on our honeymoon and I reached in the back seat for a pillow to rest my head and it felt lumpy. I unzipped the pillow case and wrapped in wedding paper in the inside was the yellow shirt with this note in the pocket. Read John 14:27-29....I love you both, Mother.

That night I paged through my Bible and found the verses,'I am leaving you with a gift: peace of mind and heart. And the peace I give isn't fragile like the peace the world gives....So don't be troubled or afraid. Remember what I told you, I am going away but I will come back to you again. If you really love me, you will be very happy for me, for now I can go to the Father, who is greater than I am....I have told you these things before they happen so that when they do, you will believe me.'

The shirt was mother's final gift. She had known for three months she had terminal Lou Gehring's Disease. Mother died the following year at age 57.

I was tempted to send the yellow shirt with her to her grave but, I'm glad I didn't because it is a vivid reminder of the love filled game she and I played for 16 years. Besides my oldest daughter is now in college and majoring in art and every art student needs a baggy yellow shirt with big pockets........


Have a wonderful Sunday and thank your Lord for all your yellow shirts......Amen

Thursday, September 15, 2011


Well my favorite time of the year has arrived but this year with a little apprehension. I said last spring I would never spend another Winter in this house. Well time is marching on and here I am. I have this uncontrollable urge to be by myself in the country with my things, in the quiet. It would be like returning to the 1800's for I have spent my life collecting antiques that no one now seems to want or have space for (kids that is). Magazines a hundred years old, quilts galore, farm equipment and old, old hand tools...and .......books and books and books. I will have to call a mover if I find a place. The funny thing is I can almost see it in my mind. I don't plan on being a burden on anyone.....I just feel this need.

As I have been getting ready for this......I realized just how much I have wrote since October of 2007. Boxes and boxes, some published and not...some just notes on envelopes and something wrote on the back of a napkin that seemed real important at the time. I guess if the day comes, I will just go through the house and point to what to take and let the kids do what they wish with the rest.

Funny how some things seem so important. I really want a fish aquarium. Lots of flowers and an East facing window to have my coffee and read my Bible at in the morning. Nothing big just homey and comfortable..........Ah, the dreams of this old brain. I must get to bed now. So pleasant dreams to all love Pokie

Tuesday, August 16, 2011

A Special Idea Today

Last week I spent almost an hour getting an MRI. The first one in a long time and this one was on my infamous left arm....the first location of my PD symptoms. and of late the location of extreme unstoppable pain. Nothing would help. Pain meds didn't phase it and Arthritis meds did not touch it either. I started ultrasound a week ago and had two sessions before my MRI. Last night my Ruematologist called me at home....PERSONALLY...I knew I was in trouble. It seems all physical therapy is to stop and surgery is scheduled as soon as St.Louis can get me in. My left shoulder is disintegrating and rapidly. I see my GP on Thursday and Orthopedic Doctor Friday. The real thing that bothers me is that pain has started in the other shoulder too and two shoulder surgeries excites me about as much as two hip surgeries. NOT AT ALL! I really have no choice though if I am to take care of myself.
God and I talked about this most of last night. I really have no fear of going into the hospital, it is coming out and to what. Ordinary people don't like sick people. They like happy, healthy people...not "downers." I have always shrived to be up and smiling. God has always helped me as he will now. As I heard last mission is coming....I have to get ready. This is on no medication. Can you imagine what I could come with on some good medication?

Now some more happenings......Monday I spoke to a caregivers support group in Effingham, Illinois. I had a full house, and had a great time. We ran into overtime and the love was really flowing. It was through Heartland Human Services. I had no notes. I just spoke from my heart to alot of people that just needed "SOME LOVING" up close and personal. I took the quilt and she still has all her charm. They OOHHHHHed and AHHHHed her and everyone touched her and felt her heart. That was my first speaking engagement and it was easy. But figure how odd this is for me to be ininvited there and come home to a phone call as to what was next.....My Lord works in mysterious ways, but he is the best friend I will ever have......

Last but not least, I have been visiting with Mattie Stepanek through his poetry, even though Mattie died some years ago to a rare form of MD. Mattie never made it to his teens but experienced life with an awesome outlook and eye. This is one of Mattie's poems....


I think I will be a tree.
Or perhaps,
A leaf on the branch on a the tree.
I will feel
The gentle breeze.
And then I will filp off of my branch on my tree
And float on the wind.
I will go
Back and forth in the breeze
All the way down to the ground
And after I rest and say "Hello"
To the grass and dirt and bugs,
I will call to the wind.
'Come and take me
to visit my other leaf friends
On all the other tree, please'

And the gentle breeze
will come
and pick me up
So that I can jump and dance
With all the other tree stars and tree-flowers
That God gave the world.
What a special idea
To be, today.

From "Heartsongs" by Matthew Joseph Thaddeus Stepanek

Friday, July 8, 2011

Another Day Another Blessing

I never feel like I know where to start when I have been away for awhile. I will have this uneasy feeling for days and get real nervous and not know why. All this usually means I have something I need to say or write and I'm looking for a place to drop whatever......(Kind of like when a mother cat is looking for a place to have her babies.) Now as I look back on my life, I find I have had this uneasy feeling a lot. I have never really found my true place and just wandered around like a "true hippy" just trying to fit in and make a difference. Now at 64, I have more time to read and listen to just what My Lord is trying to tell me. Often when young and a mother (single or not...I have been both), you get so wrapped up in the chores you forget to listen. Just a few minutes sometime each day to say, " thanks" and ask, " what next?" I have learned since coming down with my continuing aliments that I have more time to listen if I can just stay awake to hear the conversation. As I have no doubt said before somewhere, this seems like the fourth quarter of the game and the couch turned to me and said, "Go on in, Charlene." Now I really do not know if he thought there just was no more hope so what the heck OR he felt I might be able to make a difference......time will only tell.

As my new adventures usually happen, I was feeling kind of sorry for myself today and decided to just lay on the couch and pretend I was watching television and the phone rang. No it wasn't someone who was trying to sell me something.......wait a moment it might of been? She could have been offering me a new look at life. I have been ask to talk to two different support groups in the next two months....... Me all by myself. I never would have dreamed I would be ask.....really.

The thing that makes this so crazy is that I am not only battling chronic illness, but weight loss and a new body to deal with. It really was much, much easier to hide in a fat body in a wheel chair and just get by. Don't get me wrong, I am not skinny by any means, but I have lost 70 and more pounds and it's scary. I have used my fat self to protect me from harm and hurt for years. I never really let anyone get through that last door to my heart.....because if they got it open I was open to everything And the little fat girl could go home after all these years.

Along with all the rest my mom slips steadily into her own world where everyone, including me are enemies.....Alzheimer's does that and that I won't dwell on. All I can mention is I am so happy God is on my side with this and continues to offer me new stimulation and solutions to some problems.

These are just a few of the things I have learned in the past month.......noodles are get, get in the water and use those arms. Walk everyday and go as far as you can and say a prayer at the end. Try alternative medicine and get organized. ORGANIZED, ORGANIZED OR YOU WILL JUST GO IN CIRCLES trying to figure out what next. Every minute should be like a dance AND keep your favorite things at arms reach for those long sleepless nights and days of self doubt......

Well enough of my preaching. I feel vented now that I have got on the soapbox after such a long time......Peace be with you all and PLEASE take a minute to listen. Love ya Pokie

Wednesday, June 15, 2011

Thank you

It was a beautiful day in the neighborhood. The day was filled with sunshine and not so much heat. I got a phone call just after lunch from a very special lady and I hurried to my favorite meeting place(Micky-D's) to reunite with Joannie for the afternoon. What an inspiration it was to see her, bright eyed and bushy tailed after DBS surgery not too long ago. We hugged and cried and probably made complete fools of ourselves but, Lord thank you. We were so happy. I have never seen anyone look so healthy......We did some serious talking about our Savior and our health and discovered we both were putting it totally in his hands. The Quilt had worked it's magic once again and is home with me for a while. I can only tell you that life cannot get much better than this......I thank you Lord. Love Pokie

Tuesday, April 26, 2011


I put myself through such trials. Often unfounded. Sometimes I later realize the were too much medication or too little. But, as I have told you before, and whether you believe it or not.....My Lord leads me to things I would have never found on my own. So often with a disability, one becomes very sensitive to criticism......almost as if you were a china doll about to be knocked from the shelf....and in that fragile moment anxiety ramps up and our defenses come to the foreground to protect us from the fall. Sometimes even with the best of defense you fall and shatter into a million pieces. Afterward you hover somewhere, out of body, usually crying and feeling quite sorry for yourself and embarrassed at your outburst. Be you right or wrong it was probably "Ugly." What did God think? Did he say,"That's it I'm done with you and to punish you, no more good times." Nope, with me, he gives me a few days to stew and then leaves me a note on my desk and says..."Get Over It!"

This fell from my bible this morning, from nowhere:


I was shocked, confused, bewildered
as I entered Heaven's door,
not by the beauty of it all,
nor the lights or its decor.

But it was the folks in Heaven
who made me sputter and gasp....
The thieves, the liars, the sinners,
the alcoholics and the trash.

There stood the kid from seventh grade
who swiped my lunch money twice.
Next to him was my old neighbor
who never said anything nice.

Herb, who I always thought,
was rotting away in hell,
was sitting pretty on cloud nine,
looking incredibly well.

I nudged Jesus, "What's the deal?
I would love to hear Your take.
How did all these sinners get up here?
God must have made a mistake."

"And why is everyone so quiet,
so somber - give me a clue!"
"Hush, child,", He said, "They are all in shock.
No one thought they'd be seeing you!"

Here's just a few more things that were on the note:

John 3:3 Verily, Verily I say unto thee, except a man be born again, he cannot see the kingdom of God.


Luke 6:37 - Judge not and ye shall not be judged, condemn not and ye shall not be condemned, forgive and ye shall be forgiven.


Every saint has a past.....
Every sinner has a future.....
Now it's your turn.

Now last but not least. This was what I read in my Bible this morning.....NOT BY MIGHT, NOT BY POWER BUT BY MY SPIRIT I SURVIVE......So I guess this has been me on a soap box and that's all I have to say but as I look out my window the sun is shining and I am going to walk my mile talking to My God all the way...Have a great day and know I send my love...Pokie

Monday, April 18, 2011

I am on the right side

The question is ask to me daily how I went from a wheel chair to walking in ten months. The answer is that I didn't. My Lord and Savior had me on his arm continually. Nothing I have done or went through in that span of time has been without him. At one point I told someone very close to me that I thought I was Bi Polar and he chuckled and ask "Why?" I answered because I hear a voice and he laughs and he's serious but he talks to me when I ask questions and tells me what to do. My friends answer was this, "Honey, that is God and you are so blessed to be hearing his voice and you will be even more blessed if you listen and follow what he says." As crazy as it may sound, I am in moment to moment care and conversation. When I stray, I can feel him laugh at the results and then he tries again. I am so fortunate to have friends who can explain the Bible to me and one gave me an educators Bible in large print. It is one of my constant companions. I will not and can not tell you I am without pain pain is tolerable and nothing like what I use to have and that pain keeps me honest, as my dad use to say. I ask to be healed and God answered, "You are!" and I feel I am a healing in process. I take one Azilect, one aspirin,a multivitamin and one meloxicam a day. If I overdo it I may have to take one low dose hydrocordone for pain and I take a fourth of a Zanex to sleep. I take no more than this as adverse to 42 pills a day I use to be on....No seizure meds at all. Through all of this I have had a Neurologist who listens to me intently and weights my suggestions and we have a joint care of me.....At one point I had to go off all meds and it was hard and yes I went through seizures but those times are over. Occasionally on a very stressful day I will have nocturnal seizures. I have not had these in quite some time and absolutely no jurking like I had on the 42 pills. I am in no way advocating my medicine proceedure or the way I am attacking my disease, BUT I have found PD is constantly telling me what I can not do and making me so tired I just give up and go back to bed(I use to) DON'T. Muster everything you can and get up. Even if the walk you take is around your house, WALK. For every pound you loose find something that weighs that and make a pile and once a week put those things in a sack and lift them....That is what you were carrying wonder you could not walk. I tried to lift a 30 pound weight on both sides and take a step and could not even budge...No wonder.
The most important part of this journey has been my faith and the blossoming of my understanding. Ten months ago I had a bucket list and was marking off the things to do before I died. Yes, me "OL Perky Pokie".... NOT..... I did not want to go on and even with the thousands of friends I had, I felt alone, confused and done. But God was not done with me. Four times I have died since 1996 and two times I was the color of new blue jeans when they got me revived. Each death took me to a new life I had never done before. I had never wrote a word before 2007 and for sure not on the internet. One Neurologist called me a Neurological Mess. He explained I was born with juvenile epilepsy, which I never outgrew. Then developed another form later along with Parkinson's and he after thirty years of doctoring could not help me......Too bad he should see me now! As I said my God Send has been Dr. Max Benzequen and shall always be. My advice is to find a doctor you love and trust. To do this you may have to go through many. I went through eleven specialist in one year....and pray constantly for help. If you don't ask you will not receive. God is your Shepard. He will lead you to greener pastures with sunshine everyday........Love ya always Pokie

Monday, March 7, 2011

Fly, Walk, Run?

January 15......My Oh, My doesn't time fly when your having fun? I had no idea that I would stop writing when I had my hip replaced. It seems I have become very "Un- multitasking" The days seems to fly by way to fast. Maybe is the fact that I will be 64 on the fourteenth, but I doubt it. Really, I have not gotten around so well in many years and after loosing over fifty pounds, I believe I am looking better. I haven't conquered all my demons yet but am certainly trying hard. I made it to the high alter for communion this last Sunday. That is the first time in ten years at least. I was in a wheel chair eight months ago and could not even think of kneeling. As I progress along in this journey, questions get answered only to have others pop up. I could not have reached the success I have without my very close friends and most of all God. So often I think "Can't" and he tells me "Come on" instead. Pain comes and goes but I am so much better and have went from 42 pills a day to 5 and they are all vitamins of one sort or another.

I exercise whether I think I can or not. If I don't exercise one day I cannot move the next day......especially walking. I have even ran (Very awkwardly) for several feet last weekend. Most people who cannot walk dream of flying and I use to but now dream of running. I don't dream of marathons but I figure this is God's new goal for me. The hardest part is the pain in my shoulders and upper body...I have lost my strength in my left arm in particular and have do do lots of pull-ups just to stay mobile and they hurt, big time. BUT, my closest friend keeps reminding me that without pain I will have no gains.

My problem with everything else at the minute is.......admitting I am sick. Sound silly? I have been sick so long I just cannot bring myself to think of going back there and so I say little and try to understand my feelings. I have had some set backs and bouts with depression but all in all I am so much better. Surely as time goes on I will get it all straightened out and things will go back to normal........maybe not! God definitely has me on a new mission in life and I have never let him down yet. At 64 is no time to start.

I will write more as things continue to ya Pokie

Today With PokieToo and Parkinson's and Acute RA Disease