Happy Holidays.....

Here we are, so few days left til Christmas and, probably, so much to do. The weather in Illinois is not co-operating in any way for someone with a new hip. The nineteenth of November I had my right hip replaced at Barnes Jewish Hospital in St.Louis by Dr. Nunley and his staff and I can only give them all of my thanks and love for a excellent job done. I was out of the hospital in one day and have never looked back. God has given me a new chance to see His world and do His work and I SHALL DO BOTH. Exercise and healthy food and loyal support has brought me this far and I look forward to the future, MY FUTURE, as I have not looked forward for years. I would be lying if I told you I have no pain, but it is in different places and for different reasons. I now exercise at least an hour a day and though I have never been high on exercise, I can see and feel it's results. I now have one very strong leg and one with PD.....two arms with very little strength in either and a back that could go at any time. With PD, arthritis and epilepsy, this could be screaming"Go to bed and stay there." I refuse and so does someone who loves me very much. I want so to walk upright and shine in his and God's light. The main pain now is upper body and so stretching and arm pulls are ever so important and THEY HURT doing and after but some day they will no longer hurt and a I will be stronger...I would love to do what "Ellen" does when she sits down. She holds herself up by her arms for just a moment. Now granted, she is much smaller than me but, this is my goal and I am keeping it. In the middle of all this jabber, I would really like to wish yo one and all the happiest of Holiday Seasons and hope you all know I believe in your ability to fly no matter what chronic disorder you own and try to live with. Peace and Patience, my friend.....and Hope for the New Year. Love Pokie

Continuing Success

The "Wow Days" just keep on coming. I am just totally blessed and ever thankful to My Maker for his trust in my abilities and persistence in leading me on to higher ground. Just when I think I can not possibly climb one more mountain successfully, the challenge is made and I succeed. I have battled walking for over ten years, and was continually told surgery was just to risky and why would I go through it anyway because people with Parkinson's don't heal well, people with Epilepsy seize under surgery and pass on and besides that your going to be in a wheel chair anyway......Well, bull. November 19th surgery to replace my right hip after having both knees replaced five years ago and today, not two weeks later I have 21 staples removed and am walking beautifully with a cane. I have already walked one half mile at the gym yesterday and the incision has no drainage or swelling and is completely closed. Yes, I have goals and high ones and I am bull headed but it can be done and I am and will continue to be living proof you can live with PD with Quality of Life.....IF YOU FIGHT AND FIGHT HARD. I am by no means doing this on my own. My Lord and Savior has been prodding me like an old mule for quite some time. My friends from everywhere have called daily and kept me continually in their prayers and my doctors.......THE BEST. Barnes Jewish in St. Louis, Missouri, Dr. Nunley and his staff, Dr. Max Benzequen and staff, home care and physical therapy have all given me a new life to say the least and I have no idea of throwing it away.....So many new opportunities have opened up just this week that every day from now on will be jam packed with service to My Almighty but pursuit of a cure and help for chronically ill patients everywhere also. Thank you again everyone. Love Pokie

Let The Game Begin

"Send me in Coach, I'm ready to play....November 19th I entered Barnes Jewish Hospital in St Louis, Missouri for a total right hip replacement. I had weighed this in my mind since 2006 when I had my second hip replaced and was diagnosed with Parkinson's after a very slow recovery and many malfunctions, but as the pain increased weekly and my quality of life dropped to zero, I went for it. I cannot put all the decision in my hands though. In late July I was working on my bucket list so I could check out in style, feeling God would surely only put me through this, at most two more years. Nope, along came a friend who PUSHED me to fix myself as best I could...Exercise and don't give up because there are a lot of people who still love you......including your Lord and it's time to accept the next challenge. As I said that day I was in surgery by 8:00AM and out by 11:00AM and home by 6:00PM the next day with very little pain and have walked since...much to my amazement. Thanksgiving was just unbelievable this year......to say the least. My doctors and nurses were great as were all the people praying for my recovery and my friend and family by my heart and side always and then My Lord,who made fear something not considered and strength and faith, the strongest ever. I am sure I am once again on another mission. Look out chronic diseases with never ending pain, I am being put back in the game so LET THE GAMES BEGIN. love Pokie

The Patient Voice Episode 1: Pokie Too

The Patient Voice Episode 1: Pokie Too

Good Morning Sunshine

Once again I have taken a sabbatical from blogspot and ventured out into the real world. As scary as it seems and may have been from the very first step, it is "farout". How often in life do we choose to sit out the dance and loose so much? Life can become so dull and love can be missed at a time when it was needed more than ever. Just because we made a judgement call in our earlier years. Maybe with age comes the wisdom to attack it again and succeed this time and the pleasures be many times doubled. Who knows, it is all in God's hands. September and October are always big months in Parkinson's and this year is no different with the PD World Congress and YOPN Conference. Please don't let your illness define who you are. Get out and show the world who you really are.....enjoy. love Pokie

connections

It's 12:15 and I should be fast asleep and dreaming of someone I hold so dear but, here I am seeking companionship in my computer. What do people do who have no connection to the world and have these horrible diseases? My pain level is around nine tonight and with every movement comes a sound from far inside me. It's the same sound tennis players make when they hit the ball. My sound gains me no point and sometimes never even moves me. My decision is what pill do I take to gain me a peaceful co existence with the world.....Is it Zanex to sleep or hydrocodone to mask the pain. Then there is always the chance that my seizure medication could bring me some relief. When you have a chronic illness the medical world supplies you with an endless group of narcotics which might "help get you through the night" But then you have me who would rather not take medication in any form and will quite often put off medicating some thing until the pain is so intense that it takes forever for relief. I can only voice my opinion on the whole medical world as I see it today....Pray for us because we are in big trouble. My big hope was in the stem cell research fjeld. Just when it was obvious we were making huge break thoughts, a federal judge bans all future research. How can they do this when you can place a stem cell quantity in a patient and the cells grow and function....This means quadriplegic can have sensation in their limbs after many years of vegetation. Medication is being shared b cause of the cost. People are going into the hospital with one disease and never coming out because while in there they get a foreign virus and it kills them. Where does this all stop? Maybe only the heavens know........ Love Pokie

ALS TDI

Two days ago I traveled to St.Louis, Missouri for one of the most informative and interesting seminars I have been to in some time. I dawned my Patientslikeme.com shirt and drove to a meeting on ALS. At this time not knowing what to expect but always wanting to learn about Neurological Disorders and know this is the one place to go for straight answers. Why me with Parkinson's? Because I have found diagnoses change and what applies to one Neurological disorder often applies to another. So many of the symptoms for ALS and MS show up in different forms of PD. The title of the seminar was "Brick and Mortar" Non profit B iotech's Opportunities for Preclinical Drug Development. The statistics are staggering...30,000 patients in the U.S., 5,000 plus every year...Those diagnosed have a 50% mortality rate in 18 months and some 20% survive 5 years. This disease can be sporadic (90%) or genetic(10%). Thank heavens if you are diagnosed with ALS you have a wonderful place to go for clear and caring information for both you and your caregiver by going to . ALS TDI focuses on two things molecular mechanisms of disease onset and progression and therapeutic development.ALS-TDI was founded by The Heywood Family in 1999 and has an annual budget of $10 million with 42 employees and 25 full-time scientists. The driving principle behind all of his is: To combine power of a 501(3)c non profit with the best practices of a for profit biotech or pharmaceutical company in the hope that the productivity gap will be breached and a cure or better treatment found. If you are interested and you should be. check out the ALS Forum: The largest Online Discussion of ALS Therapeutics 3,000+members 40,000 posts Topics include Therapeutic and Clinical Trials to living with ALS and Advocacy. All of this comes with the chance to be anonymous, open to the public and it's FREE. Let me give you some numbers and sites and you check it out: Questions and Comments? info@als.net 617-441-7200 or www.als.net/forum or Patientslikeme.com

NEVER EVER GIVE UP IN LIFE

Not Raising Hogs....

A very close friend sent me this today to pass on to you: Dear Sir: My friend Bobby, in Missouri, just received a check for $987 from the government for not raising hogs. I want to go into the "Not Raising Hogs" business next year. What I need to know is, what is the best breed of hogs - not to raise? I want to make sure that I approach this important work in keeping with all government policies. I would prefer not to raise razorbacks, but if that is not a good breed to raise, then I will just as gladly not raise Yorkshire or Durocs. What do you recommend? As I see it the hardest part of the government program will be keeping an accurate inventory of how many hogs I haven't raised. My friend Bobby is optimistic about the future of this business. he has been raising hogs for thirty years, and the best he ever made was $392 back in 1994---until he got your check for the $987, for not raising hogs. If I get $987 for not raising hogs, will I get $1974 for not raising 100 hogs? I plan to start out small, at first, holding myself down to around 5,000 hogs not raised. That should make me about $98,700 for the first year. Then I can afford an airplane. I have another question. These hos I will not raise will not eat 90,000 bushels of corn. I understand that you have a program that pays farmers not to grow corn. what size payment can I expect for not growing the 90,000 bushels of corn that I won't need to feed to the 5,000 hogs that I am not going to raise? This estimate of potential income is needed so that I don't exceed the level the president has set--where I become a rich person and my income must be redistributed. Also I am considering the "Not Milking Cows" business, so send me any information you have on that program. In view of these plans, you understand that I will be totally unemployed. Therefore, I plan to file for food stamps and unemployment. Can ACORN help me with these applications? Be assured that you will have my vote in the coming election. Politically yours.........

Making the Most of Everything.....

I know everyone if so tired of hearing about the economy and how bad things are. I am more tired of hearing how the government is going to fix it for us. Why must we wait on them to spend more of our money and we reap less return. I am not talking finances but I am talking things we can do for our own well being and contentment that can make a big difference in our lives. We as Americans have so much and for some have Had so much and are losing it. Take a look around you. Say you are a senior citizen, in a small apartment on limited income and see few visitors. I will call you Jane for today. Jane has a sunny window in her living room that faces nowhere but the sun. In front of that window Jane could position a small table and saving fast food containers or other containers that holes can be punched in the bottom for drainage. Scavenger up some dirt from areas around you. It won't take much and if you drink coffee ....save your coffee grounds. get you some cheap seeds. They are being marked down now..thinking the season is over BUT you can play around with this all winter. My mother saves a salad tomato plant all winter last year and we enjoyed fresh tomatoes ever so often. Try lettuce and onions, herbs maybe some small flowers. Nurture these plants and their surroundings and when you harvest for a meal, make it a special affair. It's only Jane in this apartment and I have it on authority she talks to her plants and waters them daily, in return they keep her busy year around. If you have excess for one, freeze it and take it out later for soup. My grandpa use to tells us to pull up our boot straps which coming from him meant "toughen up and make things work for you." I know this is sorry times for seniors and many, many of my friends are suffering daily. But we baby boomers come from good stock and can make good if we set our mind to it. Don't be afraid to try. love always Pokie

I Hope You Dance

I have been so incredibly blessed all of my life. Even in extreme hard times God has always made sure I knew I was loved and that everything was for a reason...just believe. It seems when I settle into a routine as I have with Parkinson's then he brings something else along to stir the pot again. A new friend or old friend, an idea that won't go away no matter how silly it seems and then there's my wheels. Not chair wheels, car wheels. since at least March or more I have been without a car and trying to get to doctor appointments for me and my mom and keep the household going. I did well until the last month and things begin to pile up. Missed appointments because I had no one to take me and I just wanted out...Out for a drive, out to be by myself....just OUT. Well today I did it. My car is here and I am ever so proud. The dealership has been very special through all this. I knew just what I wanted and they would get it and it would be gone or it just was a little not right. Well she is here. A beautiful pewter color with all the bells and whistles and I am "On The Road Again" It would have been so easy for me to give up this time. The pain is severe again and my walking is not as good as it could be but, nope, I figure I have another dance in me. If you are someone reading this who feels they have come to the end of their rope and there just is nothing else exciting that could possibly venture into your life....your wrong. When you least expect it, a change will be offered to you.....a chance to dance and I hope you do.....love Pokie

Hard To Dance Without Music

I spent the night last night wandering the halls of the Internet checking the problems and joys of the World and am so disgusted at the treatment of America's Seniors. I am a senior at 63 and proud to be so. I have lived a very full and eventful life and now in the last quarter(as a friend of mine refers to it) you have the gift to look where you have been and the sense to fear what is coming. Some are lead to believe that that fear is based on dying, for me, not so. The fear comes from having to swallow every bit of your pride to beg for help and finding out no one is either listening or cares. You are a disabled senior, on a tight rope and no net below. Some already in free fall pray for death so the suffering stops.....not from pain but stress. A man is taught from day one to grow up and take care of your family, no matter what. He works his entire life thinking, I'll give this everything I have and when I retire I'll rest......WRONG. The American dream is no longer there benefits are being cut, insurance is being taken away, patients are taking their medication every other day because they can not afford it on a daily bases or are sharing it with someone who can not get it at all. That same grown man finds it har to support a family now but in his senior years find s no peace at all......the rug could be pulled at any time. In the rush to bail out Bankers who will never experience these problems, and bail out a failing economy, and put people to work....WHAT HAS THE GOVERNMENT AND SOCIETY DONE? They have taken the very foundation of the U.S.A. and disgraced it. In no other country in the World are the sick and elderly treated with such utter disrespect. When America's seniors are gone who will tell the stories and answer the questions. This generation and the one to follow is so busy the stories are never remembered and the events never happen.....and those SENIOR GENES. Those are the genes that will unlock what has went before for future breakthroughs BUT if a person cannot afford to buy his medication , he will skip doctors appointments and will not have that extra test that just might be the one that held the answer. I grew up under a very strict Scotch-Irish/Germany background. And the first thing I learned was to respect my elders ALWAYS. I'm so sorry but I see no semblance of respect in anything going on in America today toward seniors, disabled,un- insurable families.....Some of the answers on Patientslikeme have been this:

1. Wish i was smart enough to come up with a real definitive answer...but everything is just so screwed up....

2. If the gov't gets into many more things...we will be robots. Get up eat, go to bathroom, eat and sleep and keep your mouth shut..sorry. I can take alot of abuse and have in my lifetime but have never been able to stick with a liar. Once and I'm gone....absolutely no tolerance. That leaves me nothing in politics anymore....

3. How many are willing to get the power scooter and tell it like it is??? the squeakiest wheel gets the grease.......who squeaks the loudest????

4. where are the free clinics?

5. I lay awake at night trying to think of a way not to end up in a state run nursing facility where who knows what might happen to me.

In closing I can only pray for help for our Veterans that fought for nine years for agent orange benefits and the veterans coming home now with no legs and no arms to what. They fought for our rights and then our government takes them away.....Somewhere there must be an answer but only God knows where....love POkie

UNITY QUILT 2009 - charlene's MySpace Blog |

UNITY QUILT 2009 - charlene's MySpace Blog |

Diversity

As I was wading waist deep through my email, tonight, I realized there is one very large thing we with chronic diseases are doing WRONG. There is a storehouse of information that applies from one disease to another that we are not taking advantage of. For instance, using the information furnished by the Christopher Reeves Foundation to help me live with Parkinson's Disease. I read in their forum of a fifty one year old couple who have been together since high school. For the last 15 months they have been learning how to cope with care giving and their fears of what lie ahead. As I was reading this I was struck by her love for her husband and how brutally honest she was able to be about the consumption of her time to keep their family going. All she said is universal...whether paralyzed or disabled in another fashion. Yet so many will never read her words because the Christopher Reeves Foundation is not a regular stop for Parkinson's Patients. This is not helping us toward a cure on any front. As patients and caregivers we must be constantly vigilant of new areas for information for all concerned. Tonight in my travels, I have learned very good tips on traveling with a wheelchair, the news on new physical therapy, and a love story that brought tears to my eyes.

My interests are so varied, as you can tell. Colon Cancer is very high on my list as is ALS and MS not to mention Epilepsy and all the many rare neurological diseases and in the past few years I have learned that the more you reach out the more you receive. Try this today or soon and reap the rewards. Branch off from your main concern and check around somewhere else for NEW MATERIAL, a new insight on an old disease. someone Else's viewpoint. There is so much out there that can be cross referenced and used to your benefit.

This is a quote I found tonight: "There is something about our spirit that drives us toward life. Just as a tree sprout will grow toward the sun, we are drawn toward wholeness." and in that growth we must be ever conscious of the helpful forces there to nurture and sustain our growth. That sprout will never make it on his own but with God's help and support from his surroundings...he will survive and thrive. Have a good day......love Pokie

Colon Cancer Today

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

Happy Purple Day

As most everyone that reads the things a write knows, I am a very proud grandmother of six. One I lost to Sids many years ago which left five to frolic and play at the farm in the summer and weekends. Maybe because of Kane and the Sids or maybe because of me and Epilepsy and Parkinson's, I spend a huge amount of time watching how they respond to different things around them. Even before they were born I was a storehouse of questions on movements, hiccups, kicking. I'm always looking for something I never want to see. I'm always studying my diseases and friends are always sending me articles on the subjects to keep me well informed for my blog writing. This is how I met Cassidy Megan who founded Purple Day for Epilepsy which gives everyone one day in the year to put on your purple and educate and be educated about Epilepsy. My favorite is young children, third or fourth grade. Epilepsy at any stage is extremely scary. You never know when a seizure is coming and when one comes you usually loose body functions which is totally embarrassing for young and old. but i think worse for the young because the young are so hard on each other and put up almost impossible hurdles for others to conquer in order to survive in their group. If your young and your worried , you have seizures and your different , then you stand out.....considered not good among children. On Purple Day Cassidy is a PEER factor instead of a FEAR factor. They become more educated and more tolerant...The myths are dispelled and the student with Epilepsy is given a chance to be seen in a normal light. March is Epilepsy month and somewhere in that month will be PURPLE DAY 2011, but don't wait. Plan a Purple Day and raise funds for research. Do something to help and include that child with Epilepsy in....It will make you smile inside. love ya Pokie

The Rose

This song seems to be haunting me and usually that means something very important is there I need to know. Let's try it again and see:

THE ROSE

Some say Love, it is a river that drowns the tender reed.

Some say love, it is a razor that leaves your soul to bleed.

Some say love, it is a hunger, an endless aching need.

I say love, it is a flower, and you the only seed.

It's the heart afraid of breaking that never learns to dance.

It's the dream afraid of waking that never seeks a chance.

It's the one that won't be taken who cannot seem to give.

And the soul, afraid of dying that never learns to live.

When the night has been too lonely and the road has been too long.

And you think that love is only for the lucky and the strong.

Just remember in the winter far beneath the winter snow...

Lies the seed that with the sun's love in the Spring become the Rose.

Everyone is entitled to one Rose in their lifetime yet so many bounce from flower bed to flower bed never finding fertile ground to grow in or their shell is too hard to penetrate so love can sprout. How lonely to spend your life looking for something and then find it to be so close at hand......A neighbor or workmate a friend or lover long gone years before. If we take the easy way we gain nothing....in love or Parkinson's. For today, try stepping just a litle out of your comfort zone. Call someone you once loved. Look Parkinson's Disease straight on and dare it to come forward. Dare to be strong and take charge. Yes, it's a scary place to be but the rewards are great...remember these quotes I have learned over the years:

The elderly don't regret what they do but what they don't do.

There are many people walking around dead and don't even know it.

We do not stop playing because we are old, we grow old because we stop playing.

It's never too late to be all you can possibly be.

To grow older is no problem. To grow up is another problem.

Good luck with your adventures and smile love pokie

Is The World Watching????

This morning around 10:00 a young man called me and wanted advice on how I thought the government was going. Poor soul, I am sure he was not prepared for the conversation that followed. He ask me what was the one thing he could do to make me happy with my government and my answer was.... leave my social security alone. Don't be thinking it can in anyway pay off the deficit and while he was at it leave the seniors alone. Was he aware that there were seniors out here taking their medication every other day because they cannot afford it on a daily bases or because they were sharing their medication with someone who does not have or cannot afford medication. This is not right. This is America. Supposedly the world looks up to us but our heroes are being left behind to fall helplessly through the cracks and who cares. These same seniors are the founders and first caretakers of our country. We could get by on little just to be able to say we were Americans. We should not have to want for a thing in our old age we made this country. Does it make since to take from some one who already has nothing to pay off a deficit that they didn't make in the first place. Why is the person, much younger and with an income(INCOMING MONEY)not made accountable.....it looks like it is because we are not able to speak up for ourselves and who cares we are close to dying anyway....Don't think so. I plan to be around a long time and I don't like the idea of someone who spent his life time in the halls of Congress deciding me and my friends should spend our remaining years strapped for funds. We are the foundation of this country. We can and will make due BUT we shouldn't have too. I have worked HARD ALL MY LIFE to get where I am and I can go without better than most. I can stretch something to eat and make it taste good far beyond the limit..I know what living on the high side and low side and totally without side is. Everything going on in this United States, today, is about the almighty dollar. It appears to me no heart is involved. Is the World watching? Hell yes they are. Am I scared..Hell yes I am...How far away is 2012 and what are we doing to stop the tide.....looks like to me we are just pouring oil on it...Sorry, in some circles this is called "Pokie on a box." If I have offended I'm sorry but enough is about to be enough...love always Pokie

Luggage or Treasures

I'll tell you right off my symptoms are excellerated today and for what reason I do not know. I am taking my pd meds amd Epilepsy medication as directed, which is so odd for me and really feel lousy. I can attribute this to one thing, my brain is having problems processng all I am sending it's way. One travels life with so much excess baggage and it's contents will keep you from ever enjoying any of the special moments you incounter. Yet I am finding out your brain can also lead you to believe one thing when quite the opposite is true. How do you ever survive this way? How do you know when you are actually loved or is your brain just tell you this out of need? Maybe you think you have had enough of something and you haven't...this could keep you eating all your life. Tomorrow I am going to have to leave this very much behind or it will drive me crazy. This is one of those things, that when I pass, God will have to set down and explain to me. For one thing I feel no remorse for believing with all my heart and another for carrying it through my whole life but I am angry that I didn't realize it earlier. I know this seems like so much gibberish coming from a vey confussed mind but know this. This baggage might have been and still could be a Pandora's box or a place you go on a rainy day to play in a field of clover with the butterflys. Tears have a speial ingredent to heal. Heal what? Another thing I don't know...but it is an excellent way to fall a sleep and DREAM.....and PRAY. both of these I will do tonight and maybe, just maybe, tomorrow will come up clover and butterflys...love Pokie

New Signs I Thought You Might EnJoy

at the very bottom of the second sign THE BRIDGE IS OUT IN TINY LITTLE LETTERS

How's your garden going?

When Joe Parkinson's came knocking at my door four years ago this is the thing he stole from me that hurt the worse.....my ability to put out and maintain a beautiful and weed free garden. There is not one thing about gardening i don't like except deer flies and deer ticks. Deer flies can be stopped with excessive bug spray and deer ticks can be detoured but not stop ed by long sleeves and long pants with duck tape wound with the sticky side out. You'd be surprised how many of these pests you can catch and dispose of this way except you could have died of heat stroke today with all that on since the heat factor was 108. I have passed my garden spot on to my son-in-law and his friend. Tonight they brought me cabbage and they are picking green beans, peppers and cucumbers. When the tomatoes come on in full force, the freezing and canning starts for the winter. All my kids and I have a deep freeze and I freeze more now than can. The weekend I will be going to my first class reunion. It not theirs but mine. The first I have attended in 45 years and my home town is in the boot hill of Missouri which is peach country this time of the year. So, on my way back , in request from my grand kids, I am to pick up "forking peaches", which is peaches in heavy syrup in a easy to hold on to container because you eat them while still frozen with a fork in little pieces. Gives you brain freeze every time but they love them. Joe thought he had really pulled something off when he made me exit the farm chores I have always loved so much but little did he know he can't take them away from me. on my last days the memories will still cause my eyes to twinkle and shin...love Pokie

Yesterday When I Was Young...Glenn Campbell

http://blogger.com/blog-formatting.g?blogID=7105864728904284820Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings Dearest Bob(Bandido One),Thank you so much for forwarding this to me. though little sadder than I let myself go, it is beautiful and good thought for a warm summer night and a glass of wine...love ya 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

Happy PD New Year

Most people celebrate their New Year in January, mine is May 1st. At least since the first year I attended the Parkinson unity Walk in New York City. I come home and regroup and try to imagine what it is I must do in the coming year to out do what I have done in the previous year. My whole life centers around Parkinson's at the minute. Not because of the pain or discomfort but because of my obsession to find a cure. I will never personally find a cure but I dream of bringing one person from point A and one person from point B and a cure is found...Not for just PD but all Neurological Disorders. I watched St. Louis draw in 71,800 people for the Koman Race for the Cure and netted over 3 million and I say why not us. They started with 200 and look what 10 years have done. The Unity Walk pulled over 15,000 people and netted over 1 million and this was our 16th walk but LOOK OUT NEXT YEAR. My little team collected $600 the first year and and came so close to $14,000.00 this year. Every penny of that went to research. Never in my farthest dreams would I have imagined Kimberly Clark would be asking me to blog in behalf of their new program "Not On My Watch", helping to stop the spread of infectious disease in hospitals. I have lost very close friend this year as I know you have too who went in for elective surgery and never made it out because they contracted a deadly infection while in the hospital. Check this out it might save you or a loved ones life. Something is being stressed to me from an unknown source right at this moment. No one is useless. till the very last moment we can still communicate with our eyes. Just because you have been diagnosed with a chronic disease, don't give up. Find a quiet spot and give some thought to what one thing you might do to help the community, whether it be the cancer, Parkinson or whatever community...and do it regardless what those around you say. The first thing you will hear is you cannot do that because you are too sick.....the less you do the sicker you will get and the more your mind will slide...Tell your mind it's twenty and see if it will go along with it..love ya Pokie

Healthcare-Associated Infection (HAI) Not on My Watch

"Not on My Watch"

I know I promised to back off for awhile as I am finishing the quilt project for PDF BUT alas Kimberly Clark sent me some very interesting information yesterday I would like to pass on to you. Did you know that an estimated 100.000 deaths have occurred in the U.S. from healthcare-associated infections. This was reported in a Center for disease Control (CDC) report published March April 2007. The risk of acquiring these infections in developing countries is 2-20 times higher than developed countries. "Until recently , a lack of HAI reporting requirements for health care facilities has contributed to less-than-optimal emphasis being placed on eliminating the sources of health care associated infections. However, growing public anxiety regarding the issue and resulting legislation on state and local levels demanding accountability is serving to accelerate initiatives to combat HAI's. To learn more please visit www.haiwatch.com." Now, let's go to my words. In an earlier time and place a hospital was a safe place you went to be healed BUT in the past year I have lost countless friends who entered the hospital for elective surgery and I never saw them again. Gallbladder surgery..she died. Lap band...she died. There is a total panic among middle age women in my area about being alone and facing health care crisis. I am attaching a video I hope you take the time to watch and more important, the next time a health care professional touches you ask them to scrub OR hand them a sanitary wipe. Don't be shy. It's your life and well being. love Pokie

May May Ali's PSA for the 2010 Parkinson's Unity Walk

http://blogger.com/blog-formatting.g?blogID=7105864728904284820Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Two Mustard Containers

I woke up this morning, as it always happens, with the weirdest things running through my head. This happens because I suffer from Nocturnal Seizures so they say and my brain stays quite active though I think I am sleeping. Yesterday my family treated me to lunch with all the trimmings on "our back forty"by our lake. My contribution was mustard and catchup. Nice Huh? One of the nicer things about Mother's Day. But anyway, this morning I had two what appeared to be empty mustard containers on my kitchen counter. I started to throw them away and then got this wild idea to cut them in half and see just how much mustard was left inside. I know I'm loosing it, but there was enough in one to fill the other half full...really and I would have thrown them away. Not that I was that concerned about the catchup or me starving, but something about the whole process bothered me. What if we always just operated at half our capacity or finished when we were half done....How about if we only tried half hard to do anything and and then gave up and chucked it...Is that where the world is headed? What happen to the satisfaction of knowing that you completed a job and did it well and went to bed bone tired but satisfied.....All this is coming from my two now one mustard bottle from Mother's Day. Is it safe for me to venture on into my seventies, or will I be tormented by questions of evolution and space science? Losing brain cells in one place must be causing overload or confusion in other places. Well there are surveys to be taken and other things to FINISH and I am sure the since of accomplishment is just around the corner, so with that I sign off for a glass of milk and a cookie...love ya Pokie

The Latest News From The Home Front

This is some pictures of me and the girls in NYC for the 16th Annual PUW in Central Park April 26th, 2010. A glorious time was had by all and not another hour of fun could I have crammed into the time I had there. I love NYC and this year was no exception. Did you follow my teams success? We started January 1st with not a cent collected and Walk day had collected $13,350.00 for Parkinson's Disease Research. Through the Walk, every penny of that goes to research for a cure. No red tape no overhead just research. There are no words to tell you just how proud I am of my teaam and just how much fun we had in New York, I hope you understand we had never met before except on the internet on Patientslikeme.com and yet would have thought we had been friends for ever and probably will be. As you can see I and a member of my Team went to the Today Show that Friday morning. That involved us getting to 30 Rock at 5:00am and it was very cold. We were out side till 9:30 but had a ball. Sara is a tiny thing and about froze to death but stayed right with me to the end...or at least through the first half...I thought they were done. Then I went on to a Dr.Oz taping and who did he have on but Mary J. Blieth.....look out! Back to the hotel room and off to Central Park for the kick off reception for the Walk. This was something like I had never been to in my life and loved it. I was able to connect with so many people I had talked to over the year and give them a chance to see what a 63 year old goat farmer from Illinois with Parkinson's is really like....No one ran me off. As we started the next day I was struck by the beauty of the day. All around they reported storms and rain and we had 67, a light breeze and sunshine, glorious sunshine. I had a list of people I wanted to see and memorized it. Paul was sick and couldn't make it but I had a long talk with his wife. Helena and I connected all along...so special. Gary came up right away for HUGS and the girls kidded me about blushing.....He's just a really sweet good looking guy. Matthew and I connected and I got the registration stand going with PDF fliers on the Quilt Project. Team Pictures and then I saw May May sitting behind a sign working on her poem for the program. I went over and gave her a hug and got some pictures and let me tell you why. Not because her last name is ALI and her dad is Mohammad Ali, but for the three years I have been coming to the walk, she has been there faithfully. Not with a group following along behind her, not standing out, but always with a smile and a hug. The first year I had no idea who she was and was talking to her and she mentioned her dad knew of me. The second year I talked to her and her sister and now we are friends.....You know what I appreciate her being at the walk. I wish some other big names who Could Of Would OF taken the time for the common patient, not themselves. I wish in your life time you meet this lovely lady....I cherish meeting her each year. There is so much more to tell you about my perspective of the Walk. It will take me all year to get it said and then it will be time to go again....that's what keeps me going. these hugs and smiles I collect the third weekend of every April in New York City's Central Park. Thanks Pokie