Wednesday, May 27, 2009

Parkinson's is One Crazy Disease
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

This Parkinson's Disease really keeps one on their toes if you have any hope of keeping up with it. Everyday is a whole new ball game but their are no time outs to regroup. Every inning is intense and suspense activated. If Joe Parker is the Pitcher, he's the best the coach can bring in. I pray for a slow ball and he pitches a curve. I pray just to hit the ball and maybe make it to first base. He pitches that curve, I strike and I'm out for that inning. Now if I am a good player, I square off my shoulders and walk proudly away and when my next time at bat comes up, I give him my evil face and hope it will scare him. I keep my Parkinson's eye on him and my good eye on God and swing with everything I have. I'm not quite a Albert P but somewhere in my brain I think I might be if given a chance and me and the ball connect. I cannot run but I head for first and they fumble the ball somewhere in left field. With my head down and one arm swinging, I am repeating, "I think I can. I thin k I can.".....Hell has no fury like a sixty two year old grandma on a mission and I make it. .......Huffing and puffing the whole way.

As the inning progresses, more of my teammates gain hits and move me around the bases and then up steps "Big Albert" to the plate. All eyes are on Albert and I can not think for the pounding in my ears. It's that old curve ball BUT Albert gones for it and connects and it's gone!.....Joe Parker watches as I stumble across home base with Albert in close pursuit yelling "Go Parkinson's....Go for the Cure" and we win in the ninth two to nothing......What a dream ....huh? love Pokie

Saturday, May 23, 2009

Finally a Light
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Finally this week after three years, I think I have coordinated my health care in all phases. I have had to have so many specialists with all my malfunctions.....Neurologist, orthopedic surgeon, rheumatologist, and general practitioner. Often egos interfered with who would do what and then nothing would get done but this week after three years my neurologist took the big step and we are off in the right direction. I have always thought if all of my doctors would confer with each other I would come out better in the long run. I would get more testing and have a wider array of opinion as to the problem. On a three way connection this week they talked about my blood work and MRI's I had had and whether or not I had a major infection going on....My MRI's were showing spinal shirkage but my Neuro stepped in and said "NO Surgery" and got with my GP and ask to go ahead on a ultra sound to track the infection. Meanwhile my Rhuematologist was right in there tracking my blood test and monitoring Diabetic activity and Potassium levels....potassium too low and sugar too high.
Also I had my pharmacy try to charge me $444.00 for one prescription and had I paid it , it would have been gone....I refused and called my insurance and got it for $22.00....Also a $145.00 doctor bill was not billed through medicare first and denied.....Don't just step up and pay these bills because it will be your loss....and every penny is important right now.
Best of luck with your doctors and follow your heart as to what you think is right . Don't be afraid to change doctors if you don't get results.....I am very pleased with my pokie

Sunday, May 17, 2009

Getting Old and Laughing at Myself
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This getting old is a tricky thing. And when do you go through it? When your too old. Too old to finish a thought without getting side tracked. Too old to see the seriousness of something you think is funny. Too old to do what your kids tell you to do without a comment that only gets you in more trouble. I guess it's a blessing that God saves Old for we can savor the moment and even though we may be the only one enjoying the humor of it...we chuckle to ourselves and walk away while someone, somewhere is shaking their heads in disbelief. Blundering through life is one thing and then you realize that education is drastically needed to complete the goal. With three years of college behind me in the Young phase of my life, I think I could really enjoy and learn something now. College was actually a social event in our town. It was something everyone did after high school but not much was learned....Now in he quiet of my Old phase, maybe things would sink in better...I can only hope I have enough active brain cells to understand. If I don't, I'll just have something else to laugh love pokie

Thunder and Rain....
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Last week , when the first storm hit south of us, I laid in bed and thought about the thunder. When traveling back from Washington, D.C., we flew thought a distant thunder storm and it was the first time I had seen lightning bounce from cloud to cloud. In the dark it was an amazing sight as are all of God's viewings. Of course I could hear no thunder and soon we were on the ground and life went on. But the other morning I remember thinking, "This is thunder that scares dogs and kids and grandmothers." It was not your usual rumble but a loud band that just kept on rumbling like marching soldiers traveling down a dirt road...line after line, until you could see them no more. Early this morning my chocolate lab just opened the door and came in so I knew this storm would be a bad one. Even now as I type, he is lying right next to my foot. Poor soul, as a baby he was forced to live in a hog crate, outside in storms until rescued and I got him, and to this day, if it storms he has to be in and goes to the bathroom and sleeps. Somehow in his mind he has found his own pen and he feels safe there. Not so different from Parkinson's patients tending to make their safe place around them as time gets worse. Often times we make excuses to keep from going out. If we don't go out we only have to deal with ourselves and no one can hurt us....just beware of this fallacy. It will pull you down , especially now. Look at the 64 year old man last night who entered a weight show and won after suffering a heart attack right off the bat, and the lady from Scotland who sang with angels and no one ever listened. How about the goat farmer and her travels of the past year? Venture out today, after the storm. Don't be afraid of the thunder...sunshine will follow. love pokie

Wednesday, May 13, 2009

The Conference Was a Success
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Where I able to give a gift to every Parkinson patient, I would give a visit from these four people, David Zid, Jackie Russell, Debbie Guyer, and Dr.Max Benzaquen. these four people made our conference and then some. David and Jackie Pulled the group together in a circle and started very simple exercises aimed at the novice. As simple a movement as putting you hands together in a praying position in front of you and pushing can help someone with Parkinson's......or propping your feet up on a hassock for fifteen minutes. Tiny little things can make all the difference in our day. Have you ever considered which leg you step into the bath tub with? Try standing on your Parkinson leg(the side the symptoms present). It usually is pretty good at freezing and you can lift the other leg farther and higher. Hold on to your security bars and try it. It works for me. Baths or now impossible for me and oh, how I miss this....With two replaced knees and shrinking vertebra it is just out of the question...Next, I guess is a sit down tub.
One of the attendees has had Parkinson's for thirty years and spends most his time in a wheelchair. He has always been my idol for his sheer style in which he handles the disease. In my book, he and his wife are a class act in all ways. With David in front and Jackie behind, they had Bob out of the wheelchair and standing and smiling. David and Jackie just radiate love and kindness on all sides....I am so blessed to count them as my friends.
Then come the St. Louis crowd. Dr Max could have been very standoffish to the audience, but instead went person to person talking to them about Parkinson's and their treatments and doctors.....At one point he touched Bob's chest and said"Ah, very good!" ". You had a very good Doctor" He has three hundred patients in Chesterfield, Missouri.
Debbie was an integral part to the whole program. The information she provided before hand was worth everything to me. and her program on LSVT was so warm and aided by an actually participant in the audience. The whole day was friendly and comfortable for all and the actual community united with the Parkinson's Community for advancement of both. Thank-you all. The word is out that there will be a second annual except not wait a year and go for the fall....Love Pokie

Wednesday, May 6, 2009


Central Park April 26,2009 15th Annual Parkinson's Unity Walk
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Yes, we got back on Monday, almost 24 hours later than we had expected. My daughter and I couldn't get a flight together even though we were leaving New York City about the same time and as the day moved on I was in St. Louis by five and she was in Baltimore and then she was in Cleveland and at eight the next morning she was in Chicago.......trying desperately to get to St. Louis and me. The Airport Marriott in St. Louis allowed me the comfort of their space for the night and at 10:30 the next morning in the door she came. In two hours we were home and without even unpacking, I started on the conference scheduled for Saturday morning here in town. I had no idea just how tired I would be Sunday morning....and everything was over that had been going on for a year. I just sat in the living room chair Sunday and stared blankly at the TV, nodding out for a while and back to staring at the TV.
Ah, but now it is Tuesday and I have recovered. I have my meds straightened out and ready to go back to being a good Parkinson's Patient who drinks plenty of water and takes his meds on time and sleeps when he needs rest. I'm in to mailing photos of the Unity Quilt to all who made squares and had anything to do with it. She has been "oohed and aah ed" from every angle. Her story has many sides and my wish that everyone who made a square gets his story told. It should be an interesting year for pokie

Today With PokieToo and Parkinson's and Acute RA Disease