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.

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

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

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 http://www.caregivervillage.com/social 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 on....games, 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

Dreams

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

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

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

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.

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

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

Fairies at Play

REALITY

Reality came to play in my yard today.
I watched her with wonder from my room with a bay.
She danced and she sang and she chased butterflies.
I sat and I stared and I wanted to cry.

How dare her come to my yard and bring such glee.
Where roses grow in colors and bunches of three.

She ran in between and merrily she flew.
My life's been trespassed......
For Free.

Odd my mind would go here yesterday, when in the Midwest the temperatures soared past a hundred and rain came by buckets, but, I guess, it was the sight of butterflies dancing around every available flower in the yard that sent my mind to wander this path. So many uninvited things have been entering my life since I started to battle Parkinson's. Usually I don't dwell on losses and try to go on, but I see now, because I thought I had dotted all the "i's" and crossed all the "t's" as I went along and never was one to look back that I was eventually have to face facts. Then along comes something or someone who you cannot ignore and they are not considered a trespass but as they wonder into your life you are forced to acknowledge the times you have had taken away leaving so little to respond to life with. You look back and so want to be the person of before, agile and carefree but know that your bones will never leave you painless for a romp in your past. One thing I am so fortunate to have realized today,is that while the taking away was in process, some things were left behind. My heart and my mind hid quietly away as my mobility was stolen and gone. Once my body could no longer move, my figure soon drifted to places that were impossible to enter and at this point my mind sought solace and declared,"Enough." I have since realized, my heart and my mind took over for what was taken away and that was fine until yesterday and I dreamed of years gone past and freedom of flight. May it be possible, we will only see, if my mind might be stronger than all of me and gain me this one last chance at life that had slipped away only to be saved for another day. love always Pokie

Looking Up Instead of Down

No matter what you say to some people, they seem to believe they have to shy and moan and groan and pick the worst thing possible to think of . Then they grab their cup of coffee and no breakfast and start the day with that thought. They don't stand a chance of making it to noon without wanting to take someones head off or committing Harry Carrie. You know the saying, "be careful what you wish for, because you just might get it?" Well my wishes have a habit of coming true...seriously!!!! I sure am glad I think so positive all the time. Just in the past weeks negative thoughts would have robed me of millions of good times that laid the foundation for more good times. Happiness and contentment is there if you keep your chin UP not DOWN. Researchers have to think positive or a cure would not be in the offing. I also have discovered that "old" only plays a part in the scheme of things if you let it. Sure I would love to be twenty and pain free and offered the chance to start an adventure too good to be true.....yes, I know they usually are but what if it's the real deal and you missed it because YOU THOUGHT you were to old, too sick, too down instead of too up. I don't want to nag or brag but some times you just have to go for the gusto and forget all else. As long as God is your walking partner, the path will lead to somewhere and it beats the heck out of sitting at home moaning and groaning...love ya Pokie

It's A Real Special Day...

Were you aware of the fact that today is "Holy Crap,Your Hot Day". Your probably not and really don't care but think about it if your over fifty or sixty. How often does some one look at you, or treat you like your hot? If your me, and most women my age, things like that don't happen very often. This has nothing, evidently, to do with Parkinson's or Epilepsy or maybe even Arthritis because I have all and spent the weekend feeling "Not Hot" BUT "Maybe Special" for the whole weekend. I came home just absolutely on the top of the world due to two gentlemen at my 45th class reunion. Kent and Jimmy brought memories back to me that I had stored away to review in heaven. Their smiles and hugs were better than all the medication that could have ever come my way. Some might ask why I waited so long to go back. fear I am sure but I am glad I waited. My kids are grown. My grand kids are older. My life is settled ,if not in a rut..............Thoughts of times in the sixties and seventies seem to no longer dance in my head but haunt me. The life I could follow then I can no longer follow.This is not because I am older and suppose to have grown up but because the World does not believe in that life style anymore. If you want to be safe, all the fun seems to have to go down the drain. This has nothing to do with feeling "Hot"except when you feel that high you have to glow and you DO feel better and nothing is more important than that moment...Nothing before or and surely nothing that might come later, because later is no longer counted in large increments like ever it's more like tomorrow and tomorrow is ok. During this span of living life to it's fullest, Bette Milder made a movie called the "Rose" and the words from the poem it was based on changed my life Here's a little of it.

"It's the heart afraid of breaking that never learns to dance. It's the dream afraid of waking, that never seeks a chance. It's the one that won't be taken who cannot seem to give. And the soul afraid of dyin' who never see,s to live...." Loving you always Pokie