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

Today With PokieToo and Parkinson's and Acute RA Disease