Please Don't Loose Face to Face........

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A friend directed an article my way today by way of the internet. which now that I think of it would not have happened to me five years ago. My original thought was based on an article in Newsweek by Clifford Stoll.  If I understood him correctly, we are fast excluding the personal touch in life..Internet and webcasting is allowing us to sit at home and watch someone else do our thinking and socializing while we sit in our pj's with a cup of coffee and pick up every third word that is being said..

My expertise in this field is limited but when I hit the road for Parkinson's in 2008, no one knew me and I knew no one. I had just started blogging and walked into the Atlanta YOPN Conference and they were showing THIS blog on the huge screen at the front. To say my mouth dropped open is an understatement...BUT the personal social networking I did and the memories I have of each person's face I met in that convention has stuck with me for the following years with the upmost clarity. Yet let me read an article on the internet and I have to copy it and read it two or three times. I traveled that year from Atlanta to Denver, Denver to California, California to Washington, D.C. and did I mention did the Unity Walk in NYC. I also made Columbus, Ohio, Cleveland, Ohio and Inndianpolis, Indiana.....and gave a symposium all in one year. At each spot I met more and more people with Parkinson's and  learned more and more information but all face to face and then what happen?  The economy went south and people went to webcams to save money. And then they wonder why the ideas and money quit flowing. The meetings were nice but the real meetings took place in the lobbies of the hotels where we sat for hours and exchanged pictures and ideas on how to sell our product..GETTING SOMEONE TO HELP US FIND A CURE FOR PARKINSON'S. After May I became very ill and eventurally had a seizure in October.  Needless to say my traveling has been greatly limited but my belief in personal contact has not changed . The internet has been my aid as has the phone service. If I believe in a plan I will find some way to get to you or anyone else. There is a need for access to knowledge and easily.  Not everyone is a computer geek.  Though I wish I were my lack of brain cells somehow always leads me in the wrong direction. There have been times when I cannot even figure out how to get into a site. Which leads me to the next question:

Computers and learning pads in schools..When my sixteen year old granddaughter starts college and progresses to her junior year, everything she learned in her freshman year will already be adiquated. We better stay on top of this..Has anyone checked out the new invention the "sixth sense"?  It's way to technical for me to explain here just look it up...I am going to need that in ten years when my other five senses have long stopped working. At the present both my nine year old grandkids can work circles around me on my blackberry and computor and I'm proud they can. One of my grandsons has some trouble with concentration  in school but would do good with a learning pad. Don't do away with the personal touch increase it. That teacher should be just as good as that student or not be there.  AND all students or patients do not fit into a mold..No child should be told they will never make it to third grade when they are in kindergarten and no patient should be called a Neurological Mess on their second visit.

I have drug this on too long and strayed way off the subject and I see the possibility for straying further, so I will close this for another day and say this....Affection can be felt through words on the internet and sometimes that is all that is needed a kind word...love Pokie

Rare Disease Advocates Unite to Translate Slogan of Global Genes Project -- DANA POINT, Calif., Feb. 25 /PRNewswire-USNewswire/ --

Rare Disease Advocates Unite to Translate Slogan of Global Genes Project -- DANA POINT, Calif., Feb. 25 /PRNewswire-USNewswire/ --

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Anna

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Despite the fact that in Illinois it is twenty degrees and suppose to go lower and that is well below what it is suppose to be, the sun is shining today and the mailman brought me three seed catalogs to spend my afternoon thumbing through.  My mail man knows the tiller will never leave the barn this year yet with a wink he shut the mailbox and drove on. I'll give the catalog people four stars the catalogs are enticing and beautiful but if the Parkinson's let me garden the back and epilepsy would not, and oh, how I miss it.

This month I would be making a trip to Anna's to see what she is going to plant in her green house for sell. Anna is Mennite and I am Methodist.  She is healthy and I am not.  Her well is on high ground and probably not contaminated and mine is not and might be.She still farms in a big way and I am retired.  Yet we have been friends for over ten years...and when I start making visions of summer in my battered brain Anna is one of the first to surface with a smile.  Bare foot, with her apron tucked up so not to get it dirty.  Grandkids always close at tow by the dozens. Yet though they may be at play they all have a purpose, and as they grow up those play areas will become jobs and someday they will support their families with their dreams and fun. Anna took over her bothers farm and moved all her family from Pennsylvania with a plan. Each of her children grew up to be a laborer but not necessarily farmers. One mends leather goods and horse trappings. Since he is the only one around that does this, he does very well. One is a carpenter and one is a cabinet maker and her daughters not only are good cooks but paint and sew and are brought up to do business and math.. No thought was ever given to working at McDonalds. They all grew up learning their profession and their mother made sure they learned it well. Her husband is the head farmer for the community and they truck farm huge fields of tomatoes as well as potted plants and starter plants.....which brings me back to the beginning.

Anna and I ,this time of year, start planning for next year. We stop under her Oak trees and have tea and talk about the World. I get a few (fewer each year) plants and we laugh at the new crop of grand kids and feel the spring breeze.  I leave with a prayer from Anna and we both know our days as Matriarchs of our families are getting harder to control. Anna looks at me with the same wink the mailman sends me and we hold hands as I make it to the car. "I'll be back for flowers for the porch." a hug is exchanged and at least Illinois is better for today...Love Pokie

A Neurological Mess

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Where do you go from here? All day as I laid on the couch and tried to recouperate from yesterday these words kept sounding out in my head....A NEUROLOGICAL MESS.... My new Neurologist told me this yesterday. In his view point I have Parkinson's, Epilepcy, Sleep Apnea, Movement Disorder Problems, along with type 2 diabetes and blood pressure problems, not to mention the Arthritis and bone spurs .The left side of my brain is blocking the right sides sparking and so on. He is a thirty year veteran in Neurology and most of that has been as a department head and he let me know up front he will probably refer me to someone else because I am over his head in problems.  I smiled and listened to what he said and I thought to myself.  Here we go again eleven doctors in five years.  Am I getting anywhere?  The advantage of this is, you become very good at judging quality. You see the newest of technology and your time becomes their time. There are some days I pray for no more doctor visits, no more runs to the pharmacy, no more illness...just quiet.

But then I return home and one of my kids has read my blog and posted a comment.  Someone has called and ask for help or information. Someone needed cheering up and I was able to make them laugh and everything bad seems to drift away to some unknown place. Me dealing with these diseases is not normal or maybe I am not normal.  My only concern now is please keep we walking. Fatigue is around every corner and depression could be his companion. Pills are my enemy in numbers and kinds. I look at them and try everything I can think of to get them down. Applesauce and cottage cheese seem to be the latest method I have.  I take a tablespoon of food with as many pills as I can put in there and swallow.  I am just trying to trick my brain into thinking no pills are in there.Most of the time it works This is where I am now, trying to trick my own brain into letting me live happily.

The better part is, there has become something so much more special in my life..For one my grandchildren sparkle on all sides. One is my grandson Ayden . He is rapidly passing me in motor skills and intelligence, but when he is with me he always keeps an eye on me and never puts me down.and if things get out of hand he will just come over and give me an unsolicited hug and kiss. You see he can crawl and run and I cannot.  He can lay and play on the floor, I cannot.  He has fine motor skills to open things and I have none.  But we have an unsurpassed love between us that all those diseases have not touched and the Neurological Mess makes no difference.

Where do I go from here, who knows. More advocacy work. More prayer for some cures. More letting people see me and realize my worth. Every patient who stays in the public eye keeps a thought of that disease in the mind of someone else. Every doctors visit I make and endure may keep my grandson from having to go to a doctor for this.  I don't know why I'm so blessed with all this but I believe it is to touch peoples lives and help find these cures. The only way I can help is through experience. I know first hand and therefore I can get on a "one on one" level to understand and help with the problems. No one has looked at disease this way. It has always been take a pill and come back if it doesn't get better and I'll give you another pill. After several kinds of pills the patient gets worse or better.  Better is fine, worse they give them more pills and usually pain takes over. This opens new doors to new pills and new symptoms and we are off into the crazy world of medicating illness, especially chronic illness. I will fight my Mess as long as I can and write all I can to save someone from ever having to join me in this Mess...love Pokie

Real-World People with Parkinson's: Meet "PokieToo"

One more month and it will be Parkinson Awareness month. Are you ready to do something that will bring a cure on? Can you look at your grandkids and say, beyond a doubt, they will not get this disease? Talk to just one person and spread the word....love Pokie

Oh well......

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This has been an interesting week for me and Parkinson's.  How could someone be happy with a power chair? How could someone be happy with realizing that from 2006 to now my walking and general demeanor has changed that much? But regardless I will need a power chair soon and I need it now if I intend on going far, yet so few can get one and I was lucky enough to come across a doctor who believed in my attitude and knew I would continue to try with or without the chair. I also missed a doctor appointment today and this really upset me. I had the right date written down in my address book BUT believed all day it was Wednesday and had to reschedule when an hour after I was suppose to be their my son called and convinced me it was actually Thursday and not Wednesday.. About this I really don't know what to say. It was my fault but I had tried so hard to keep the appointment straight and get everything together for it yet I had the wrong day and I did not show up.I guess my brain was miss firing all week, because I have been a day off since Monday.  I think I will blame it on the snow and the fear of more snow. Maybe being snow bound with someone who does not know what day it is either...that doesn't sound good does it?  Maybe I just will not  blame it on anything and except it as what goes on and not worry about it. I look at my new "red" chair and I smile and I'm proud. I didn't wait, I pushed on.  My doctor cared enough to work on something for me I had no idea he was working on because he knew he was leaving and I would need this more and more and my pride was stopping me from asking.  Well it sure is pretty and has found a good home....I hope for a long time. 

There is No Greater Love

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I have spent the night thinking of the people of this world battleing much more pain and hardship than me and on this my Lord's day of rest I wish to say, "Thank you, Lord for the Francesco Clarks and Jamie Heywoods of the world who lead us humble fighters on to higher ground. When faced with pain and inablity to walk it is so easy to turn to the couch and turn on the TV and zone out for another day. How many days do we have left to waste in that fashion?. There are mothers with babies going steadily down hill and no one will help them.  There are people in pain and no one lending a hand.. How could we have let His world have gotten to this state? No matter our adversity and no matter our amount of strength left we must push forward NOW. One person can make a difference.  One person can be heard.  Out of a crowd, one person yelling Help will be noticed. Beuracracies have been allowed to flourish in this country and not for the good of the people. Medicine for the people has now become that persons personal concern.  No longer can you put your trust in the government to protect you at all cost.  Where did we get lost in the shuffle? How do they expect someone on very limited income, in extreme pain, with no family backup to battle something as big as the FDA.
We can only pray at this point in time that by holding hands and banding together, we help families like the Hempel's , who are forced to experiment with medicine for their twin daughters with a rare disease. This is America.  This should not be happening. The love that flows from that mother to her daughters should also flow from our government to us.  Instead it is the DOLLAR . Please on this day of rest I ask you this thought to ponder, When all thoughts go to the Super Bowl remember those with disabilities, remember us that are so poor.  If you have only an encouraging word to give on Monday, GIVE IT. If you have an extra dollar contribute it.  If someone is close and they need a hug, give it to them....send them a song light their way to higher ground.
I hope this is not just a grandmothers ramblings on a cold Sunday morning in Illinois. My concerns are legitimate. There are those who know how to help those who do not and my belief is God will connect us in do time. I am very sure the World is in much worse shape than anyone will say. It's time to resort back to what you can remember of ancestors past. How did they survive? Something in the back of my head just keeps saying . "There is no greater love"......than a brother for his brother, a mother for her daughters, a friend for a friend....ONE ON ONE.....love Pokie 

Setting Myself Up....

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I received a compliment this morning on my blog along with a suggestion for improvement and a thought flashed through my head.  As usual there is not much in there to stop it so here it comes.  How about if you want to see something here, and you can explain to me how to get it here, you leave me a comment and I'll try to get you what you want. I am not satisfied with the colors  and feel very cramped by the style BUT I know so little about the internet and am afraid I will loose my set up and not be published.  I have done this before.
  I would love to tie COFFEE WITH POKIE and TODAY WITH POKIE together so my readers don't have to travel with their cup of coffee but I have so much material and it just is never in the same catagory...COFFEE just always comes out a little on the funny side while it's twin TODAY usuallly is much more serious. The truth is I play with Coffee and am much more protective of Today but as I said if you would like to see me try something please leave me a note and I'll try it...from links to tabs to content to pictures.   I just have so much I usually want to say and so little space...love Pokie

PEACE....

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Where do YOU go when your looking for peace? You do know some never find that certain spot. Some say it is found in prayer and meditation. These are calming and eventually bring me peace.  If I do not have my hour of prayer every morning my day just never gets started.  It's worth it to get up early just to fit it in but in this lies another possibility.  Sunrise....especially winter sunrises with red and orange lighting up the East sky in only a way God could master.  To me, this means so many things.  For one, I have made it through another night of migrating from couch to recliner to internet and back to couch.  By the time 6:00AM rolls around I am exhausted but need to take my meds so I sit down at the table and stare out the window and then, "There comes the sun" In every down there is an up and every once in a while you just need to weed out the possibilities and start over.. In the past weeks I have had to view my life from so many angles. I've had to think about things I was traveling to fast to notice. My meds are all being redone and in that so are my doctors. This always brings confusion in a big way to me. Confusion and lack of peace are two things Parkinson's is always trying to rob me of but as some one told my daughter, "Your mom, she's a tough old broad." and I think they were right. Being tough has come in handy over the years. I'm not one for questions but I'm always doing....something. My peace is not found in a quiet mind.  I do not know what that is.  When I'm sleeping I have Rems Disorder and dream fantastic dreams. I wake up and cannot wait to read and write. The only true peace I find is sitting staring at nature or my latest grandson.  Now I find these may also be absence seizures. and with Ayden I am just mesmerized. I worry about those who never find peace and always find fault.What could I do to help you find my peace. Would it feel as good to you? Tomorrow when the sun comes up and I am having my morning coffee my prayer will be for YOU AND ME. I'll pray that we both find peace in our own worlds before it's too late...love Pokie

Jamie Heywood: The big idea my brother inspired | Video on TED.com

Jamie Heywood: The big idea my brother inspired | Video on TED.com

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The Power of One Person

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This is a quote from the Unity Walk Brief Today about someone maybe you didn't know but whom made a huge difference in the disease I am fighting and I will miss her, greatly.

Margot Zobel, founder of the Parkinson's Unity Walk, passed away on January 29th, 2010.  Some might say she lost her long  and difficult battle with Parkinson's, but her valient effort to improve the lives of others who suffeer with PD met with unquestioned triumph thousands of times over.

Margot's life's work stands as a testament to the power of one person to inspire others to action.  In her quiet and dignified way she planted a seed in New York City that helped galvanize a diverse group of individuals with a shared illness, into a vital, inclusive community around the world.

The Parkinson's Unity Walk has becom a shining example of what grass roots involvement can do to improve visability, expand research and restore quality of life to millions who once felt powerless.  We are indebted to Margot Zobel for her vision, strength and unwavering commitment in the face of a relentless adversary, Parkinson's Disease.

In lieu of flowers, the family request tha donations be made to the Parkinson's Unity Walk in memory of Margot. Services will be at a later date.

To read more, please click on the following link:http://www.unitywalk.org/  Thank you Margot  love Pokie