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

Saturday, January 15, 2011

If you love life...fight for it

Check this out and be prepared to start out crying and end up cheering for my new idol in this never ending battle against Parkinson's, arthritis and everything else that just keeps me from walking and doing what I really want to do. Look at that look on Larry's face! I have felt that look. I have seen the world through those eyes......and I am and continue to fight for life as I love it. No I am not too crippled. No I am not too old and No my life is not all about PD but it is about mobility in any form and through that mobility...... TOUCHING......always love Pokie
www.ridewithlarry the link and a couple of articles to check out are:
2. story.

Today With PokieToo and Parkinson's and Acute RA Disease