WHAT A NIGHT

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 sure.....love Pokie ...............Oh, and P.S...Thank you, God....you were right as always.

THERACYCLE...YES

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....http://blog.theracycle.com/?p=23   love ya Pokie

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

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

"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