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 night.....my 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....

LEAF OF THE DAY

Today,
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

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

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

BEST IN THE WORLD

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:

BEST POEM IN THE WORLD

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.

JUDGE NOT

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.

REMEMBER...JUST GOING TO CHURCH DOESN'T MAKE YOU A CHRISTIAN ANY MORE THAN STANDING IN YOUR GARAGE MAKES YOU A CAR.

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

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 BUT......my 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 around...no 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

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 unfold.........love ya Pokie

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 movie.com-is the link and a couple of articles to check out are:
1http://www.sandiago.com/arts/san-diago-filmmaker-focuses-on-parkinson-s-disease
2.http://www.nhregister.com/articles/2011//01/09news/metro/doc4d2936D585aaf387934027.txt?viewmode=full story.

Crosby, Stills, Nash & Young - Woodstock

Happy Birthday Woodstock...Wow!

No Pain, No Gain......

It's five am in Illinois and we have extreme weather conditions all around. Icing everywhere does not encourage me to get real excited about venturing outside to get some form of exercise...This is what I have been working on while not blogging daily. November nineteenth I had my right hip replaced and with that decided to just reinvent my whole life. I now exercise an hour or more daily. I have lost 34 pounds since August 1st and this is what I am trying. I joined the Y and go in and walk the gym in laps. One lap is one/sixteenth of a mile. As of yesterday, I am up to a half mile, 8 laps.....four without a walker and four with. I can now accomplish this in 24 minutes. Not lightening but gets the heart rate up and is building the strength in my legs AND MIND. I found out that after the surgery, my repaired leg wanted to go big time but my PD leg wanted now to freeze. My leg that was operated on is smaller than the PD one but seems to be much stronger. My main worry now is upper body strength....especially my left (PD) arm. The upper muscle in both arms has excruciating pain most of the time SO I do three sets of twelve, arm pulls to the front with a Pilate's stretch cord, three sets of twelve lying in bed and extending my arms straight over me and making large circles to small circles, leg lifts high to just off of the bed and then back up. I have never been an exerciser and this is not fun but I am starting to see the rewards and that is fun. Second is dry skin......My meds seem to drain every ounce of moisture out of my body so "Lubriderm Lotion" constantly and lots of liquid water or green tea. I force myself daily to do my hair and makeup....why, because, I have found if I don't force ALL of this I will not do it and I will die a slow death and not even know it. In with all this I am working on a 1000 piece puzzle of down town New York City(for the brain), read my Bible and several books loaned me by a special friend and take care of my 87 year old mom with Alzheimer's. None of this would be possible were it not for the total support of a long time love, who constantly tells me my worth to (if no one else) him. He sets my goals on very high shelves and encourages me to reach ever higher. What a difference he has made in my life at 63.The point behind all this is.....If I can do this, so can you. A chronic disease is a killer in so many ways. It not only kills your body but your brain while it runs all those around you away in fear. Those who are once friends, tend to pity you and you let them. This causes you to start a never ending road that takes you nowhere but to "Waste Land U.S.A." Please, no matter what chronic disease you are battling, do one thing for YOUR improvement today. Then tomorrow try two things. Life at this end of the scale maybe short but it need not be unproductive. Take five minutes and laugh, if at no one else, yourself and know I am thinking of each and everyone of you at this Christmas Season with love in my heart. Love Pokie

New Agenda

The PLM Unity Quilt came home today for the holidays and arrived just in time for my home nurse and PT lady to see it and and it looks like a new Symposium is wanted in the area. I had successfully pulled one off in May of 2009....my first with no experience, so this one should go smoother and PD has come so far visually since then, especially in our rural area in Illinois. That has always been my plan to get us out and let the world see just how productive we are. So often the plan for a PD patient is to put them in a nursing home and give up....No need.....we can and will survive if given just a little help.

These are the things on my new agenda:
Love, love and more love.
Symposium next summer for Fayette County
Team Patientslikeme is up and taking new members and donations for the 2011 Unity Walk
Finish all the stories behind the Unity Quilt and let people feel and love her.
Go to Washington, DC in February for PAN
Work with the city for a better Chronic Disease Support Group
Unity Walk in April and praying for 30,000.00 in Team donations, which would be double last year.
Make these diseases visible and get them cured or at least let us have a much better Quality of Life than what they are offering now.

Sounds like a lot of work but I do not take being given a new chance to walk lightly and will continue to fight with all I have...love Pokie

The Patient Voice Episode 1: Pokie Too

The Patient Voice Episode 1: Pokie Too

How Time Slips Away

I have definitely been slacking on my writing, lately. At least public writing....... I am constantly writing poetry and prose on slips of paper and sticking them in books or my purse and pull them out much later to review and add to. In the past five years I have accumulated many mountains of the written word...some mine(most) and some from other people. With Parkinson's I have trouble retaining what I read , but have found if I write it down it sticks better, hence stacks of unfiled thoughts and dreams. I still wake up in the middle of the night with a verse or song going through my brain, begging for attention, at which time I climb out of bed and usually, spend all night perfecting it to my taste. Last night or better yet, this morning I woke up in prayer, not once but twice. This is a first for me. My prayer was in thanks for a special relationship which is forming. I can only say there is a lot to be said for hanging on just a little longer when you think there is no more to live for. As optimistic as I seem, recently I had all the pain and negativity I could stand and was just tired. Tired of fighting to live, tired of being surrounded by negative thoughts and tired of trying to make good of a very hard road to travel by ones self. I was truly making my bucket list and hoping to be spared continuing strife on my journeys to the after life. I pulled together all the courage I could and ventured out after months of home bound living and you know what? God rewarded my efforts once again. I know in times of upheaval over religion and faith, there is a lot of disbelief, but I am solid in my faith! As hard as my times get I have never decided to opt out and end it....I just blend back into the woodwork and become complacent. GOD SAID NO! It isn't time yet and brought me a whole new fantastic life like none I have ever known.......If I had a way I would bottle this and send it to each of my friends and acquaintances in the belief that their life would be saved too. I am no spring chick and I move like I'm ninety sometimes, but I know I am loved through and through and someone cares, just about me. In that thought I was made to understand that when you receive you pay back. Never take anything you cannot repay. .....and if the pleasure was GREAT pay back in kind and it keeps on coming.....I had no idea what I was missing until God took me and showed me......and so at three this morning before time slipped any further away, I was giving thanks in my dreams. I will not share my veery personal prayer but I am sure God heard me and listened....Love Pokie

Weathered and Worn

See this old barn. She's standing so proud, though her supports are very compromised and she appears quite faded. She has taken repeated attacks against her exterior and still remains true to herself, and Oh, the stories she can tell. She is very large by general standards and in some places very disorganized, yet she stands proudly for all to see. I bet she never even thought of making a "bucket list" or giving up. I passed her two weeks ago on a journey to my past.
You see two months or more ago I had given up and was making lists of things I really wanted to do before I died. This is so totally not me but none the less I was there, making my bucket list.....Me the person who cheers everyone else up was failing and fast....I was just tired. I was tired of thirty some pills a day, I was tired of hobbling everywhere I wanted to go. I was tired of feeling ninety when I was sixty I was just tired! Though I was ready to check it all in, God must have had other plans for me. As he usually does, He sent me an option. Chuck it in and give up or look around and try again....I can say this much about the whole process....it scared me to death but now two months into it I have never been happier in my life.
As humans in God's world we really are not given the option to quit, no matter what. Much like this old barn I have been beat on and weathered many a very strong storm and YET survived to see the sunshine the next day. If there is one thing I have had all my life is faith. Sometimes it has made me appear to be a pie eyed "Pollyanna" and I have often been referred to as "just a little off" but it has gotten me to today. When God decided to show me what it was to be truly loved, he did a beautiful job, as always. I passed this barn on a journey to my past and came back to just stare in amazement at it's beauty. I hope I make you proud. Lord, were you to travel by me and just take a glance. I'll not give up again and I truly thank you for the faith you had and still have in me.
"No one can go back and make a new beginning BUT anyone can start from now and make a happy ending." and "We are never given dreams without also being given the power to make them come true" "Why do we close our eyes when we sleep....when we cry, when we imagine or when we kiss? Because, the most beautiful things in the world or unseen." Love ya Pokie

I'm not Defined By PD and Neither Are You....

Recently someone very close to me, got all of my attention when he said, "You are not defined by Parkinson's" I really had not given it any thought before that. I was having a particularly bad day as we often do ...On days and OFF days...all the time, but this one was the worst possible. I didn't feel good and pain was high, I was having huge amounts of trouble standing and walking and I had a meeting I needed to drive to St.Louis for that afternoon. My phones were giving me a fit, and all my reception on this hill of granite was gone.....even my land line was not charging......so about one in the afternoon I said to my friend, "I'm not going to go. " It would have been very easy to have just gone back to bed and sletp the rest of the day away. His statement to me was one I shall always carry with me and cherish. "You are not defined by Parkinson's Disease. You are a beautiful woman, with or without Parkinson's. Whether you know it or not, I depend on you for my strength.....DON'T LET ME DOWN!"
Needless to say, I went to the meeting and had a great time and when I got home a message was waiting for me. " You never know when someone else is depending on you for their strength. You wouldn't want to let them down"......No I do not.
I am so blessed to have so many friends and in particular one who can put me back on the right path when I stray and feel so sorry for myself...........................love ya always Pokie

How Could This Happen

Just when it looked like we might be making some headway, THIS. Monday a federal judge issued a temporary injunction halting federal funding for human embryonic stem cell research.What is wrong with these people? In one fatal swoop any new grants are on hold. To put it in very real terms, the National Institutes of Health(NIH) stated yesterday that 50 grants up for peer review were pulled; 12 proposals worth $15-$20 million ready ready fr their annual renewal in September will not be renewed. In addition human embryonic stem cell lines ready to be added to the registry(the listing of eligible stem cell lines) will be placed on hold. We are still waiting for definite guidance from NIH about how this ruling will affect research already underway using this years money.I am so up[set as are so many more in the Parkinson and Neurological Disorder communities. That is why we simply cannot accept this mandate....Please stay tuned in the coming days and weeks for important updates on this issue and how your voice will play an important role.
I hope you as an ordinary patients have a big word in this
lease stay abreast of this and let you Congress how upset you are.....Hound your legislator for support. Let's all get out there and push this rec ending

"Old"

For four years or more, I have been in search of answers to many questions that enter in and out of my life. One of them is when does one become old? While growing up; "old" was my grandparents and the little ladies at church with the heavy nylon stockings which always seemed to sag somewhere and the shriveled up little men who carried gum to entice you into good behavior and light conversation. As I got older; " old" was ladies with too much makeup and too funny a color hair and men wearing bad fitting topees. After sixty; I went into denial and refused to address the subject any longer. I am now sixty three and think of "old" as a hundred and can only hope, if I make it, I do so with company. No one wants to be alone but particularly when your old. Pain seems worse as does thinking. Life is so much easier with a friend.....and life has graced me with many friends and lots of love. Recently my life took another turn and this turn came at a particularly bad time but as it seems, God did not wish me to decide I was done and give up. As I made my Bucket List in preparation for my inevitable demise He intervened, as He always does and sent me down yet another path.....teaching me once again I am not in control and never was . Only my Lord decides when and where and just how happy or unhappy you shall be. I HAVE NOW COME TO THE CONCLUSION THAT"Old" is just a word not to be thought about. Some may be "old " at twenty or maybe born old......I chose to stay forever a kid in my heart and possibly that kid will convince my mind and body that "Old" just doesn't exist.....Love ya always Pokie

Rainbow Connections

God gives us Rainbow Connections, to heed or ignore....Little visions and voices that lead us in one direction or another on any given day. Some listen intently to these voices and others just ignore them and do as they please. What a waste of God's time if one chooses to ignore ans how frustrated he must be getting at our actions. Did someone need a hug today and you passed them by? Did you have extra of anything and not pass it on to someone needing it? Could a nice word have been spoken instead of the rough words that erupted? Did you hold someone down for your own happiness, without remembering that a caged bird does not sing? Why can we not see that our Rainbow Connection is here, now. Our chance to find that pot of gold and make it ever shine for ALL to see. Try it today .....don't make it about money but instead about love. Love your neighbor as you would love yourself.....maybe there is were the problem lies. We cannot love ourselves, so therefore cannot love our neighbor. Somehow we must all make that journey to our "Rainbow Connection", sit quietly and listen to the voices of change......then act on those voices:

"who said that every wish would be heard or answered
When wished on a morning star?
Someone thought of that
and someone believed it
and look what it has done so far."

Yes, I am definitely a dreamer and a lover, I'm told, as well. But look around you at the wonderful space we have been given to inhabit? Regardless of what you believe you must realize and be thankful and pay forward or back for the rent you are owing. There are so many ways to shine, today. Take just a moment with that cup of coffee and come up with just one pleasure for Your Higher Being.....love Pokie

NEVER EVER GIVE UP IN LIFE

For as long as I can remember I have viewed Sunday as God's day....and that always made Sunday so special. The best of all things happened on Sundays. When I was small my grandparents lived two doors down from me and every Sunday they would pick my brother and I up for church which was one of my favorite places to go. My grandparents never missed a Sunday and my grandfather was always well armed with chewing gum for all surrounding kids in hope the chewing would keep them quiet for the duration of the service. After services we would go to my grandmothers for late lunch and a day of just loafing. "Grampa Mac" always said, "God made Sunday for loafing...it was in the Bible."
My Sunday is going to be for thanks today. Thanks to a very special friend who has always been there for me throughout my life. In times when we were apart he helped me through troubled times without even knowing it. Just the thought or the memory would spur me on to the next day and everything would be better. Once a very special friend comes into your life, they really never leave. They are there even if it is only in your mind. I am finding in my later years that My Mind and God's Way seem to be all intertwined to where they can not be separated. Well, without rambling on needlessly I would like to dedicate this to my special friend in time and hope your Sunday is filled with peace and contentment.

YOU RAISE ME UP

"When I am down and oh my soul so weary,
When troubles come and I my heart it burdened be.
Then I sit still and waiting here in silence
Till you come and sit awhile with me.

You raise me up, so I can stand on mountains.
You raise me up, to walk on stormy seas.
I am strong, when I am on our shoulders,
You raise me up to more than I can be." Love ya always Pokie

Tuesday Morning Sunshine

Illinois summers often leave a lot to be desired when it comes to comforts. The heat gets ever higher and the humidity triples the actual figures. It seems no one on the face of this earth could be unhealthy if they lived in Illinois or Missouri because every bad toxin being carried around by that person would surely be sweated out of their system by the extreme conditions. This is were the mind must become very inventive and take the body to a "Paradise Lost." This is something my mind has always been able to do. I am the original dreamer. As a child, I could always play happily with my cat "Double Ugly" and the world just did not exists around me. Little did I know that through out my adult life this has been a God Sent Gift. Four or five years ago, when Parkinson's raised its head and demanded attention, I was able to sent my mind to higher ground for safety. I would dream and still do dream of every possible opportunity I could find to stay active and mobile. At times it was sewing and travel, writing and computer work BUT now many years later I see that no matter how much you love something you have to keep on a strict schedule, try to stay focused and most important KEEP MOVING. I have a tendency to get started at the computer and go all day writing. This in its self very satisfying to me and allows my inner child to play but the exercise gets put off for another day and that day never comes. Since last week I have accumulated enough dreams to last me the rest of my lifetime but I now realize that it's a package deal. Get fit, be healthy, and take those dreams to the max. This Tuesday morning in Illinois, the sun is shining and it is already looking at one hundred at nine in the morning. I have had my fresh peach and a cup of coffee with fresh local honey. Add to that a crunchy peanut butter and honey sandwich on whole wheat bread and I should be ready to dance with the best of them until noon with the help of another fresh peach at about ten......and those dreams and memories dance and play happily throughout my brain. love Pokie

Look at Our Finished Project

Look at this finished quilt all ready to be shipped to Glasgow, Scotland for it's debut to the World at the Parkinson's Global Congress in the fall.This is the combined effort of 16 Parkinson's patients and Parkinson's friends in different stages of the disease but ready to show their abilities to shine. The Parkinson's disease Foundation has been working diligently since last October to put together a huge display for the Congress called the PDF Quilt Project and these panels were made by only patients and friends who post on Patientslikeme.com. From Kenya to Chili, from East coast , West Coast and Texas and the Midwest, the panels came in. They were made with love and heart felt happiness to be participating in something so important to Parkinson's Awareness. As each panel arrived at my house in Illinois over the months, before I sent them jointly in for quilting, you could feel the personalities and warmth. Like a bunch of kids, each was different and unique. some needed mending, and some were not square, some needed backing to make them stronger. some drew a picture and some told a story and some just begged you to touch and get to know them.

By the time the day came to call FedEx and package all sixteen 2 foot x 2 foot panels for shipping, I handled each one it seemed a hundred times and I could barely let them go. But that evening as I sat and stared at them one last time.....something inside me just was bursting with pride. The same pride a mother feels when she sees her children walk down the isle to receive their diploma to graduate. I just stood up in the middle of my living room, with no one around, and said quietly to myself, "Yes, we are being heard, finally." Bless you
Parkinson's DiseaseFoundation for giving us this opportunity and bless you, the makers of these panels for your time and effort while battling this awful disease and last but not least thank and bless you Patientslikeme.com for giving us a home to flourish from........As always Pokie