Off Days, or Just Between........

Does everyone have days like this or just people with Parkinson's? You sit in the chair believing that you will get up and do something constructive and yet you stare mindlessly at the television and hear not a word that it is trying to tell you. Huh? seems to be the word for the day as everything anyone tells you has to be repeated. Every time you sit down you nod out. I wonder if I am physically tired or mentally tired or both or bored.....Please not the dreaded bored....I fight boredom more than anything else simply because one of my college professors told me that only the stupid should ever have any reason to be bored. So with that thought firmly implanted in my brain, it has been my life's journey never to be or appear bored for fear of someone calling me stupid. Why do we torture ourselves so? I really have no idea but it is a hard habit to break this believing every word the general public tells you is the gospel truth. So often it is far from the truth. When you have Parkinson's, it is not long before questions start forming in the back of your mind about your medications and just your general care which leads to a huge amount of daily research and reading. While doing all of this, I have to constantly try to be objective and not gullible. It's a great blessing that these days never last more than a day and are usually preempted by extreme fatigue so if I do not fight it and curl up and sleep all day...I am cured. My guess God has a duel purpose for sending these days our way....rest for one but more important to clear the cobwebs out of the attic and clean up a little up there. I am sure a clean attic will bring on clearer thoughts and thoughts of value to others and not just me....So with that I will sleep well tonight and be up early tomorrow for Coffee With Me....love Pokie

It's a Beautiful Day in Illinois

Saturday it is and one more day and it is rest day but one more day and my grandson Ayden will be two. The day he was born I could barely lift my arms to hold him and now we romp and play in my power chair. He is the youngest of my grandchildren and the only one to have never known me without a limp or obviously suffering pain but he handles it as only he can. Last week, out of the clear blue sky he lifted my feet and put them on the foot rest on my chair as he sat and looked up at me and smiled. Somehow at his early age he knows. I had started out to write about the past and as the words hit the page I realized nothing is about the past anymore....it is all about the future. If that future be one hour or one day, one year or a decade , why not cram every happy thing you can in to it and enjoy? Why dwell on what was? We as a society and we as a community of Parkinson's patients experience loss daily. There is no happiness in loss......SO..... stop look around you for a bright color , a ray of light, someone giggling and go in that direction instead of backwards. I have been thinking it over and my thoughts are to live the remainder of my life as simply and childlike as I can. I think my grandson has cornered the market and getting just what he needs to live on and be healthy. He lives not in excess or hate and showers love where ever he goes and so on this almost Father's Day I'm going to say, "Thank you Matt for giving me the gift of your son , my grandson Ayden," and "Thank you for all the years of laughter and joy you have brought into my life........always Mom

Strawberry Fields Forever

"Strawberry Fields," the memorial to John Lennon in Central Park. This is where I started my first Unity Walk three years ago and where I will go and sit on the bench and think back to the sixties for just a moment before I carry on in the 2010's next week. This year more than any other year before the walk my mind is swimming with ideas for fund raising and writing and poems for the coming year....realizing that only superman could pull all that off and live. I am " very aware of the " paying forward " principle and believe in it. I have said long before anyone mentioned an economy crisis that we needed to "Get Back" "Get Back to Where we once belonged" It's simple if you try and rewarding in many ways. I'm not saying go back to the getto and get killed or deal drugs. I am saying "Get Back" inside where YOUR happiness is and make YOURSELF smile by paying BACK or FORWARD and creating your "Strawberry Fields Forever"..................love you Always Pokie

Team Patientslikeme at $5120.00 for PUW

You know what, I am running out of words to describe this group of people I have become so happy to run around with. Never in my life have I felt so at ease with so many people from so many walks of life. The sick the well, the wealthy the poor, the educated and the not can all be blended very well in most any situation when it comes to Parkinson's and our time to shine is fast upon us. April Fools Day starts our month, National Parkinson's Month. Some say our color is red. Some say it is silver. I tend to sway toward the red tulip....only because Karen Painter was the first to hand deliver one of her hand made pens to me in Atlanta at the YOPN Conference in 2008. That was my first attended Parkinson's conference and I had just started blogging. I still have that pin and where it to every major function I attend for Parkinson's and with total PRIDE. I look at my Team at the Unity Walk and watch it grow daily. I post the totals every day on Patientslikeme.com as I will today ....Team Patientslikeme $5120.00 $541,060.00 over all. Proud just seems so shallow a term for a group that started with not one sent January 1 and has over$5000.00 three months later and sure to get more in the next month. We're proud of our home site and want the world to know. The phone calls are going constantly and emails are flying. What we may have casually mentioned before we are begging for now.....The thing that spurs me on is that every penny of this goes to research....EVERY PENNY.... never forget that is so important. I am starting to pack my bag. Yes I start early because the assortment is huge and the airport is harsh...I have even been known to mail gifts to the hotel I am staying at....I know I will have to send a package home...I did last year. I hope somehow I can touch each person and tell them the love they have brought to my life will never be forgotten and be forever cherished. This is not only the members of my team, but people I have met on the street at the Today Show, Very special organizers of other walks, bloggers from all over the world, and those who have written articles about me and to me. We have some how all become one big family and it feels very good and comforting....thank you Pokie

The Cook In Me Still Lives......

Eventhough most of my meals jump from boxes to the table with very little help mind or body wise from me, the cook in me still lives. When I was old enough to pull a chair to the stove, meal making was my responsibility.  I was given a Betty Crocker first edition cookbook and told to go for it.  "Betty" told me there was no such thing as simple incomplete meals...meat, potatoes, bread, vegetable, glass of tea or milk and dessert....Always a dessert! I would get off the school bus and be sure I started the meal to be on the table promptly at 5:30.  We would eat then I would do the dishes.  This went on every night except Sunday when we went to my grandmothers on the other end of the block.  I still have that cook book along with many more that would have ended up in someone's trash can had I not saved them from an untimely death. Neighbors, grandmothers and friends always brought me THEIR favorite cookbooks when downsizing.They all knew, all too well, that they were in good hands for awhile because a cook book I cannot distroy. Out of three children and five grandchildren I have maybe two children and two grandkids that think they like to cook BUT not the old "I think I'll spend the day in the kitchen" recipies. My brother sent me a cookbook from San Francisco in the sixties on bread making which has so much dough on the pages they look antiqued. It makes twelve loaves of dough at a time.  Can you vision what size bowl I had to start out with and did it by hand once a week.  I was a true "hippy" My second husbands mother was a great cook I heard, though I never met her. When we went to her house on her passing, at the back door was a trashcan full of books.  Now throwing any kind of book away is a scrilage to me...especially cookbooks and poetry. I paid my respects and slipped out quitely and filled my trunk to the brim.  That could have been one of the contributing factors to my second and final divorce....Another whole story to say the least .It is now some thirty years later and I have those books and use them with the old computer cards, we keypunchers use to use for bookmarks.  Those bookmarks are the very best recipes......I never move those bookmarks in the belief they were put there for life and if you move them that recipe will fail.   Silly. huh?

Earlier in the week I wrote about Anna. She has a fullproof recipe for baked bread that makes two loaves

ANNA'S BREAD

one package dry yeast

1/4 cup lukewarm water

Let stand 5 min's in a bowl.  In a large mixing bowl put:

2 Tablespoons sugar (I prefer brown)

2 teaspoons salt (I prefer sea salt)

2 tablespoons shortening  (You know I would go for butter)

2 cups scalded milk (Here I use 2%)

Let mixture cool until luke warm add yeast misture stir gradually

6 cups or more flour

Mix well till you make a stiff dough and turn out on board floured and knead until smooth and satiny. shape into ball and turn into a greased bowl with bread greased all ove and cove to rise.  Double in bulk should come in two hours.  Punch down and turn out on board and cut in half for two loaves or one loaf and rolls for the little ones...Great recipe    Bake in a hot oven (400) for 50-60-min  crusty bread

When I was snowed in two weeks ago mom and I just ate bread and soup all day.  How fattening is that?  Nothing you would want to tell Dr. Oz. But those two loaves made two old snowed in crazy ladies very happy...love Pokie