Wednesday, September 30, 2009

Computer Savvy
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Today was quite the day for me on the computer.  I usually just stumble in and out of sites and always spend way too much time wandering around and going back and forth.  I have vowed to change this in the coming year.  This may be harder than I think but today I attended my first webcast on the computer at and it was excellent.  Melissa J Niremberg M.D,, PhD. from Weill Cornell Medical College, New York, N.Y. was the guest speaker .  Her topic was Myths and Truths with Parkinson's.  The site was easily accessible and extremely well formed.  I took four pages of notes and felt like she was hitting all the things I had always wondered about.  The webcast will be archived October 5th for continual viewing.  November 17th will be the next webcast and it will be on Caregivers.  This may turn out to bee the safest way to get information this winter.  You can get your beverage of choice and snuggle down with your computer with no exposure to the flu.
Some of the highlights where that Parkinson's is a disease you can take on and still have quality of life.  One of the statements she made particularly hit home with me."Parkinson's cannot get suddenly worse without a cause." Be it infection, another illness or medication changes, look for the underlying cause and do not stand for the statement,"It's just your PD."Another myth is that Sinemet stops working after five years.  Wrong.  Huge on the scale of things to look for is Urinary Tract Infections. These are very common in PD patients and can set up a lowgrade infection before you know it.
Movement disorder is only a part of PD.  Non motor symptoms rank high.
1. shoulder pain...misdiagnosed as rotter cuff when increased sinemet can improve it.
2. lose of smell may come on many years before actual diagnoses
3 .corpule tunnel misdiagnosed  and is actually PD.
4 .Rem disorder may start 2 or more years in advance of diagnoses.
5  Cognitive issues.
6.  Blood pressure drop when standing.
7.  Fatigue...fatigue...fatigue.
8.  Intestinal and bladder problems.
9.  Depression and anxiety.
people and doctors tend to notice what they see and do not know about the motor skill problems if you do not tell them and be hard headed about it.  Don't just take a simple answer as the gospel.  Do your research..Good luck  love Pokie

Tuesday, September 29, 2009

Changes in the Air
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This is and has always been my favorite time of year.  As a farmer the crops come in and the gardens are put up in anticipation of a hard winter.  No matter what my circumstances, I have always put vegetables up and laid in supplies for the winter.  It may be really important this year to be prepared because of our condition and the threats of flu.  I plan to stay on the farm as much as I can stand it and be exposed to illness at a minimum.
Mom and I visited the garden today for the last of the peppers, tomatoes and watermelons.  Tomorrow we will harvest some sweet potatoes and regular potatoes.  This activity really makes my mom feel good.  She lived through the depression in a family of twelve and the present economy scares her terribly.  The more she sees me putting up the better she feels.  Nothing must go to waste because throwing away is not in her being.  It's funny how she can remember that time so well and yet her daily tasks are so frustrating.  We co-hab in a split level from the sixties and if she needs something upstairs, by the time she gets there she has forgotten what she wanted.  God bless her she tries and works entirely too hard for someone her age.  I see the fear in her eyes at what is going on around her and it makes me so sad.  We passed our doctor of thirty years the other day at the hospital.  It was me with Parkinson's and my mom with Alzheimers and my eight year old granddaughter.  As he passed he started laughing.  I looked at him and my reply was, "What?"  He answered,  "It's hard to tell who is taking care of who."  Some days I wonder the same thing.  I know we are just beginning on the journey through the real changes.  She has always had someone to take care of her.  First her older brothers and then my dad and now me. She does not understand what is wrong with me and why I am so tired all the time and even if I explained whe wouldn't understand.  I am becoming the mother and she the child except I cannot walk.....Oh, well thank God we are farmers because there is always something for her to watch or piddle with out here and life goes on regardless of Pokie

Tuesday, September 22, 2009

What Is Going On?
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Just when I needed to be picked up and refurbished, along comes this awesome summer. Nothing like this have I ever seen in Illinois but I am loving it to the last minute. Some of my favorite things are really simple and one of them is feeling the breeze and watching the curtains billow in the wind through an open window, absence of heat and humidity, sunshine, fireworks and lunar eclipses. All of these I have experienced this summer and loved it. How great it must be to be in the new stadium watching the Cardinals going all the way. I am pretty home bound now but the idea and dream are almost as good as the real thing.With all the rain and the size of the weeds in the country, possibly one would think there was no beauty to be found in an overground yard but they are wrong. One particular patch of weeds in my yard are at least twelve feet tall, much to the dismay of my kids until yesterday. As I was eating lunch the Monarch Butterflies came in in groves landing on top of these ugly weeds transforming them to works of art. The power of the mind to find a better place in times of strife is amazing and should be given attention by all. Even New York City has learned the benefits of down time with their second hand lawn chairs in Time Square. People are just taking a chair and watching the world go by on their lunch cool. New York is one of my favorite cities and finally it's great people are learning to slow up, rest and watch the people around you...and it's free...try pokie

Friday, September 18, 2009

What a Game Parkinson's Is......
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This Parkinson's Disease really keeps one on their toes, if you have any hope of keeping up. Everyday is a whole new ball game but there are no time outs to regroup. Every inning is intense and suspense activated. If Joe Parker is the Pitcher, (Parkinson's) he is the best the coach can send in. I pray for a slow ball and he pitches a curve. I pray to just hit the ball and maybe make it to first . He pitches that curve....I strike and I am out for the inning. Now if I am a good player, which I am, I square off my shoulders and walk proudly away. When my next time at bat comes up, I give him my evil face and hope I will scare him. I keep my Parkinson's eye on him and my good eye on God and swing with everything I have. I am not a Albert P. but somewhere in my brain I think I might be if given half 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 think I can." Hell has no fury like a sixty three year old grandmother on a mission and I make it to first base huffing and puffing all the way.

As the inning progresses, two of my team mates are up to bat and strike out and then up steps "Big Albert" to the plate. All eyes are on Albert and I can hardly think for the pounding in my ears. I pray, "Please not the curve ball." but sure enough here it comes BUT Albert goes 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

Tuesday, September 8, 2009

These are the Days.......
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I have always been an artist in my soul. I always saw the beauty in the smallest things and loved not only sunlight but moonlight, fall and summer. The coldest days and the deepest snow were an amazement to me. I could watch that snow falling at night, glistening like diamonds and almost be in a trance. I once watched an eclipse with all my friends on PLM as it traveled from the East Coast to the West Coast and we posted on the forum all night like kids at play. I've walked in the rain and made snow angels in the snow and now God has chosen me to be blessed with renewed friendships from forty five years ago. Out of nowhere friends have been contacting me from my early years. Next door neighbors, girlfriends from high school and many more people I never expected to ever see or hear from again. God has given me another chance to make it ALL right and let them know how important they always were to me. They will never be taken for granted again. In the past week I have made friends with people I never expected to meet and was given the chance to stand up for my passions and speak my piece. It seems I was taken to the bottom of the bucket in the last six months so I could appreciate now even more.

My favorite poet Helen Lowrie Marshall once wrote in "These Are The Days"......
These are the days.....these autumn days.
When memories haunt us most;
When our Yesterday's Self goes wandering
Like a restless little ghost
Down long forgotten pathways
Of things that use to be,
Vainly trying to fasten leaves
Back on a blaze blown tree.

But oh, these two are golden days,
With beauty unsurpassed...
Days when our life brings forth its yield
Of riches from the past;
Days when the golden wealth of joys
And tears that we have sown
Has reached its ripe fruition....
To strength and beauty sewn.

These are the days...the harvest days
When life is rich and whole...
The spirits golden bounty days
Fulfillment of the soul.

There is one thing I must say............I learned of a dear friends change of plans in life and I pray it's for the better. If I never see her again I would like for her to know she will be greatly missed but her smile and huge heart will never be forgotten and I wish her all the success and happiness that life can bring her because she is one of a kind "Missy I will always love you like my own".....Pokie

Today With PokieToo and Parkinson's and Acute RA Disease