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January 1, 2010, we did not exist. Though somewhere in the hallways of Patientslikeme.com, there is always a new idea just waiting to be recognized and tried. First we were a team of four then we were more . This year we have team members and then friends just stopping by to " talk and walk."....Friends we have made over the years on the site and no matter what they do or where they go,, when they enter the Walk area and you see them, all time fades away. Pain and sorrow is exchanged for a hug and the world is OK for another day. I have always commented on the diversity of our group on the site, and yet we all get along. We have farmers, poets and authors, travelers and lawyers, doctors and business men and women BUT we all have Parkinson's or know someone who has Parkinson's and we know that pain like no one else. Our community on and off the internet in something so special and one the World should take notice of, for this, in it's own little way, is just what is needed to keep the World going today. We stick together no matter what. We give what we have and more to stay together. We always think of the other person and we pay forward. In our giving and paying forward, the World notices and they pay forward, hence our Team total this morning $10,961.00. That is in three months. This speaks volumes for my friends and their families and friends. Everyone is in a pinch these days, but they gave and I so appreciate every penny. The reason I support the Parkinson Unity Walk so vigorously is just that. Every penny goes to research, every penny! This morning how many of those pennies have they collected? $over 900,000.00. As I have said before and will keep saying, the unique combination of groups like PUW and Patientslikme.com and Parkinson's Patients is what will find this cure. No fancy, no overhead, just listening and following through. Pulling those brains that can help together with the patient that knows and helping them find the money to find that cure. My belief has been for the last three years that one discovery in one field will help the next, MS, ALS, MSA, PD Epilepsy and more.....they (doctors and big business) just needs to start listening to us.
I am the captain of TEAM PATIENTSLIKEME and a proud captain I am. It has been my pleasure to serve you and now the fun begins. I am about to go into "down mode" as I pack up all the electrical things I need to travel. Tomorrow is my day to fly to NYC.......Let the games Begin. Thank you all for the memories so far and thank you in advance for the memories to come. love always, Pokie
Wednesday, April 21, 2010
Tuesday, April 20, 2010
PatientsLikeMe's Jamie Heywood on "Rapid Fire: Healthcare" (Gov 2.0 | 2009)
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Yes You Can
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Where am I going, and how do I get there, and what is the best I can expect? Three such special questions that I waited until last year to ask myself. About the same time as the 2.0 Health Conference in California last year, I was terribly sick and could not figure out why, nor could the doctors. My PDR's were running in the 50's and everyday was a total struggle. I felt terrible. I felt bad enough I ask my favorite doctor, "Is this the end? Are you sure I have PD and not ALS....this is terrible?" I kept plugging along though my endurance and strength was zero. I never put it on the internet except to take it to the researchers on PLM. I said, "These are my symptoms and lab results, xray readings and anything else I can find can you help me and article that I needed to read started popping up on my Facebook homepage. The word got across and I did not give up. I was setting up my live feed for Q&A on my blogs at the 2.0 Conference and stepped into the kitchen for water and God sent me the reason for my problems. I had a grand mal seizure and laid on the floor for three hours before my mom found me...Ah, I now have Epilepsy AGAIN or still....No seizures that I knew of since 1996 and now..BUT I have a different kind of EP, Absence and Nocturnal are my thing.....This day I was just way too over stressed and on no medication. My brain was firing in all directions and not connecting.
After a week in the hospital and loosing the opportunity of a lifetime at the conference, I heard Jamie Haywood from Patientslikeme.com had also been a speaker at the conference and his speech just resonated in my head everytime I heard it, which was many. That passion that had lit a fire three years before now was fanned into a full blown bomb fire. I have never looked back and don't plan to. For what time I have, I will fight for the patient but more importantly I will encourage the patient to fight for himself. He is truly the only one who knows how he feels, in his bones, in his mind, and in his heart.
Focus, Focus.....I have lost this somewhere in the stack of papers on my desk, and because of that I am having a terrible time packing for my NYC trip. I need such a variety of clothing and just cannot seem to concentrate.....and every time my feet hit the floor my mother comes upstairs and sits down to check what I am doing...I do hate this. She asks me also where I am going...some times 20 times a day.....then who is going with me.....then when will I be back? By then I have forgotten what I was wanting to put in my suit case. I tried tiptoeing but that is not some thing PD patients do very well, especially this PD patient on squeaky floors. Oh well, I have to look forward to this too. She is 84 and has Alzheimer's. I hope when I get to this stage I live by myself so I can enjoy it.....
So to sum up my ramblings, I will do the Unity Walks forever and you should also. The feelings are ones you need to survive today. HOPE, FRIENDSHIP,COMMUNITY, AND THE FEELING YOU CAN.......................YES YOU CAN love ya Pokie
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Where am I going, and how do I get there, and what is the best I can expect? Three such special questions that I waited until last year to ask myself. About the same time as the 2.0 Health Conference in California last year, I was terribly sick and could not figure out why, nor could the doctors. My PDR's were running in the 50's and everyday was a total struggle. I felt terrible. I felt bad enough I ask my favorite doctor, "Is this the end? Are you sure I have PD and not ALS....this is terrible?" I kept plugging along though my endurance and strength was zero. I never put it on the internet except to take it to the researchers on PLM. I said, "These are my symptoms and lab results, xray readings and anything else I can find can you help me and article that I needed to read started popping up on my Facebook homepage. The word got across and I did not give up. I was setting up my live feed for Q&A on my blogs at the 2.0 Conference and stepped into the kitchen for water and God sent me the reason for my problems. I had a grand mal seizure and laid on the floor for three hours before my mom found me...Ah, I now have Epilepsy AGAIN or still....No seizures that I knew of since 1996 and now..BUT I have a different kind of EP, Absence and Nocturnal are my thing.....This day I was just way too over stressed and on no medication. My brain was firing in all directions and not connecting.
After a week in the hospital and loosing the opportunity of a lifetime at the conference, I heard Jamie Haywood from Patientslikeme.com had also been a speaker at the conference and his speech just resonated in my head everytime I heard it, which was many. That passion that had lit a fire three years before now was fanned into a full blown bomb fire. I have never looked back and don't plan to. For what time I have, I will fight for the patient but more importantly I will encourage the patient to fight for himself. He is truly the only one who knows how he feels, in his bones, in his mind, and in his heart.
Focus, Focus.....I have lost this somewhere in the stack of papers on my desk, and because of that I am having a terrible time packing for my NYC trip. I need such a variety of clothing and just cannot seem to concentrate.....and every time my feet hit the floor my mother comes upstairs and sits down to check what I am doing...I do hate this. She asks me also where I am going...some times 20 times a day.....then who is going with me.....then when will I be back? By then I have forgotten what I was wanting to put in my suit case. I tried tiptoeing but that is not some thing PD patients do very well, especially this PD patient on squeaky floors. Oh well, I have to look forward to this too. She is 84 and has Alzheimer's. I hope when I get to this stage I live by myself so I can enjoy it.....
So to sum up my ramblings, I will do the Unity Walks forever and you should also. The feelings are ones you need to survive today. HOPE, FRIENDSHIP,COMMUNITY, AND THE FEELING YOU CAN.......................YES YOU CAN love ya Pokie
Monday, April 19, 2010
FOUR DAYS
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I am in a state of total disbelief. Not that I have not always been a positive person BUT, I have been poor all my life, not dirt poor but poor enough. If anyone would have toid me three years ago anything that happened to me last wek was on the way I would have laughed them out of the room. Several times I have called my oldest daughter at work, just to tell her, "Heidi. your just not going to believe." Never in a thousand years would I have thought I would have been able to raise $2,100.00 on my own and one donation $1,000.00. Universities are contacting me and saying they have noticed my blogs are have realized I am a fighter and was being studied. I have been invited to events that before I could only dream of...rather like someone standing outside peering through the window at the gala inside. None of this has ever bothered me because none of this has ever been in my realm of function. Now here I am, blundering my way through unknown territory. It's just too funny. A wardrobe that was just fine for all events, now leaves alot to be desired. Shoes, which I have just worn for comfort, not looks, is a whole different story. I walk like a drunk, old lady anyway and then try to dress that up.....Croc's don't come in dressy. Then there is this thought..to scooter, or wheelchair or powerchair...that is the question. And last but not least, names....yes names...buy the thousands. What name goes with what school or company, what book did they write and what was it's name? Do you since just a little panic here? I have learned after 63 years in this body that there is no problem I cannot handle. God has sent some pretty rough ones my way in past years and I always survived. AND I am sure once my journey starts Thursday I will be just fine BUT in this moment I am driving me and everyone around me crazy......and some of us were already there to start with love Pokie
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I am in a state of total disbelief. Not that I have not always been a positive person BUT, I have been poor all my life, not dirt poor but poor enough. If anyone would have toid me three years ago anything that happened to me last wek was on the way I would have laughed them out of the room. Several times I have called my oldest daughter at work, just to tell her, "Heidi. your just not going to believe." Never in a thousand years would I have thought I would have been able to raise $2,100.00 on my own and one donation $1,000.00. Universities are contacting me and saying they have noticed my blogs are have realized I am a fighter and was being studied. I have been invited to events that before I could only dream of...rather like someone standing outside peering through the window at the gala inside. None of this has ever bothered me because none of this has ever been in my realm of function. Now here I am, blundering my way through unknown territory. It's just too funny. A wardrobe that was just fine for all events, now leaves alot to be desired. Shoes, which I have just worn for comfort, not looks, is a whole different story. I walk like a drunk, old lady anyway and then try to dress that up.....Croc's don't come in dressy. Then there is this thought..to scooter, or wheelchair or powerchair...that is the question. And last but not least, names....yes names...buy the thousands. What name goes with what school or company, what book did they write and what was it's name? Do you since just a little panic here? I have learned after 63 years in this body that there is no problem I cannot handle. God has sent some pretty rough ones my way in past years and I always survived. AND I am sure once my journey starts Thursday I will be just fine BUT in this moment I am driving me and everyone around me crazy......and some of us were already there to start with love Pokie
Thursday, April 15, 2010
Real-World People with Parkinson's: Meet "PokieToo"
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Favorites PUW 2008
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These are some of my many favorite photos from the 2008 Unity Walk. After this I was sure to return every year. The one one just above is from the LeGuardia Marriott. I ask for a view and this is it my first night in NYC. I kept getting up all night looking out the window to watch it change. The second one was taken by my daughter as I left St Louis not knowing what was in the background and that I would come out a shadow and It , as always, would stand out. "Turn to God" and"He doesn't just wish for peace he works for it"
Above that is my first buddies on Patientslikeme.com, Tom, Little Dixie and Tom's wife. What a time we had and afterward New York Pizza.
AND THE TOP....BUT NOT LAST...For as far as I could see in all directions were patients and families, survivors and friends, walkers and riders, smilers and criers, yet we all held hands and hearts and we walked two miles on a beautiful day for a cure for Parkinson's.
Thank you Parkinson's Unity Walk for a life time of experiences in three years...love ya Pokie
Wednesday, April 14, 2010
From April To April
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Most ordinary people gauge their year in twelve months starting with January and ending with December. No not this silly lady.... My year starts the day after I get home from NYC. Well that is not totally true. Usually I just almost collapse for a week and then revamp and start again. So lets say April 31sth I start planning for the third weekend in April of the next year when I can go back to NYC and a new Unity Walk and a new set of challenges. I really believe it is just those challenges that keep me going. Paying rent for this life I have been given the opportunity to live. I still wander around in wide eyed amazement at the people I meet and the conversations I am able to have. At times I amaze myself with what comes out of my mouth to total strangers and yet they seem to understand.
The funniest part of all this is my children. The first year they were so against me going. They fussed and cried and fussed some more. I went by myself and had, as God wanted, a wonderful time out of harms way. I do realie not everyone can do this....but I do. The second year my oldest daughter went along saying she had a job she needed to check on in the area. She may have had one but her main jo b was checking out my friends and my behavior. Now this year both my daughters are going and my son would have came also but has to work....Why are they coming? Mainly because they are suffering from a huge case of denial as to what all their mother is into. Darn those moms. You give them an inch and they take a yard. Well regardless I am determined to show them a good time in the BIG APPLE and on Saturday I hope my Team has a once in a life time experience that cannot be topped. Who said PD patients could show no emotion and needed to be isolated in a nursing home? I would really like to have a little talk with him.....and also Colon Cancer Alliance and Epilepsy Foundation look out. I'm starting on you next..love Pokie
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Most ordinary people gauge their year in twelve months starting with January and ending with December. No not this silly lady.... My year starts the day after I get home from NYC. Well that is not totally true. Usually I just almost collapse for a week and then revamp and start again. So lets say April 31sth I start planning for the third weekend in April of the next year when I can go back to NYC and a new Unity Walk and a new set of challenges. I really believe it is just those challenges that keep me going. Paying rent for this life I have been given the opportunity to live. I still wander around in wide eyed amazement at the people I meet and the conversations I am able to have. At times I amaze myself with what comes out of my mouth to total strangers and yet they seem to understand.
The funniest part of all this is my children. The first year they were so against me going. They fussed and cried and fussed some more. I went by myself and had, as God wanted, a wonderful time out of harms way. I do realie not everyone can do this....but I do. The second year my oldest daughter went along saying she had a job she needed to check on in the area. She may have had one but her main jo b was checking out my friends and my behavior. Now this year both my daughters are going and my son would have came also but has to work....Why are they coming? Mainly because they are suffering from a huge case of denial as to what all their mother is into. Darn those moms. You give them an inch and they take a yard. Well regardless I am determined to show them a good time in the BIG APPLE and on Saturday I hope my Team has a once in a life time experience that cannot be topped. Who said PD patients could show no emotion and needed to be isolated in a nursing home? I would really like to have a little talk with him.....and also Colon Cancer Alliance and Epilepsy Foundation look out. I'm starting on you next..love Pokie
Tuesday, April 13, 2010
Just When You Give Up......
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Just when you think there is not another email to be sent, another person to beg, another door to knock on, another person to humble yourself too, another donation comes in. This time from such a sweet guy in New York who I have never met and next week end he will be at the beach when I arrive in NYC but he has sent me his book and I will read it and pass it on to you because that is what God did to me....When it seemed my little team had found the well dry along came Ed and saved my spirits. Thank you so much Ed and I just cannot wait to get my mail.
Next Thursday morning early is when I leave for New York City. Things are starting to creep into my always overloaded bag and lists are stuck to everything. The girls are coming over this weekend to give everything the once over to see if mom can still pull this off. Mom herself is beginning to wonder as the recliner looks better and better every minute. I have heard that Starbucks has backed out this year........this makes me so sad. I was and still will be an early arriver at the Walk and they would give me endless free coffee as I sat and took in Central Park's early morning Glory about 7AM......There is a set of rocks that stick out of the ground close to where we use to meet and I would get my coffee and crawl up there , out of the way, and watch for limos and just imagine who was inside. greet joggers and the weirdest assortment of dogs, and just generally saw why John Lennon loved Central Park so. These are some of the best memories of my life, for sure. I can never explain to anyone my feelings and in some ways I will not even try, but the first year I as so enthused that the second year my oldest daughter went along to check it out and now this year two of my daughters are going.
I may not make the goals I set for myself and my team but it will not be for lack of trying. Each of my team, small and large has brought their own spice to the pot and we will definitely set NYC on fire. I plan to take my laptop along and blog daily so look out for Team Patientslikeme...love Pokie
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Just when you think there is not another email to be sent, another person to beg, another door to knock on, another person to humble yourself too, another donation comes in. This time from such a sweet guy in New York who I have never met and next week end he will be at the beach when I arrive in NYC but he has sent me his book and I will read it and pass it on to you because that is what God did to me....When it seemed my little team had found the well dry along came Ed and saved my spirits. Thank you so much Ed and I just cannot wait to get my mail.
Next Thursday morning early is when I leave for New York City. Things are starting to creep into my always overloaded bag and lists are stuck to everything. The girls are coming over this weekend to give everything the once over to see if mom can still pull this off. Mom herself is beginning to wonder as the recliner looks better and better every minute. I have heard that Starbucks has backed out this year........this makes me so sad. I was and still will be an early arriver at the Walk and they would give me endless free coffee as I sat and took in Central Park's early morning Glory about 7AM......There is a set of rocks that stick out of the ground close to where we use to meet and I would get my coffee and crawl up there , out of the way, and watch for limos and just imagine who was inside. greet joggers and the weirdest assortment of dogs, and just generally saw why John Lennon loved Central Park so. These are some of the best memories of my life, for sure. I can never explain to anyone my feelings and in some ways I will not even try, but the first year I as so enthused that the second year my oldest daughter went along to check it out and now this year two of my daughters are going.
I may not make the goals I set for myself and my team but it will not be for lack of trying. Each of my team, small and large has brought their own spice to the pot and we will definitely set NYC on fire. I plan to take my laptop along and blog daily so look out for Team Patientslikeme...love Pokie
Saturday, April 10, 2010
HATS
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Blogger: Today With PokieToo and Parkinson's Disease - Formatting SettingsI am a person who travels with many hats. Not physical hats but hats that drive my family crazy. At 63 and because I have trouble walking because of Parkinson's and because I have Arthritis and Epilepsy, they, for some reason think I would be better off staying at home. I really think if that were to happen and I had not my dreams and the internet I would go quite peacefully insane. There are some hats I can not wear anymore and one of them is farmer and I cannot garden which I loved, but as God took these things away he left the good memories and opened doors to other things. Travel and the internet, research and poetry, writing and many,many friends. The hats just keep changing. The Parkinson's Foundation started my list of foundations and then there was the Arthritis Foundation and then the Epilepsy Foundation and Colon Cancer Alliance and then the Christopher Reeves Foundation, all of which I am active in and love with all my heart but one stands strong and wears the biggest red hat with tulips on the brim and that's the Parkinson's Unity Walk. This year is the 16th Annual. I am so ready to head to NYC. All my reservations are made and I am starting on my bags....and then I just sit and wait til that day when I fly.
My Team is Team Patientslike and there is no one prouder of their team than me. I realize, as captain, that is natural, but please, this little team has performed miracles. $6300.00 Dollars and still going and no corporate sponsor to double our total. Somehow I will find a way to thank them for all there time and consideration to the cause. Just in case someone reading this does not know every cent of this money goes to research.....no overhead red tape...every penny! Think about it and donate. Fill up one of your hats and send it our way.....Love ya Pokie
and remember:
Yes You Can
No matter what the task may be,
How hard the course you face;
Believe that you have what it takes
To run life's toughest race.
No matter what the task may be,
How hard the course you face;
Believe that you have what it takes
To run life's toughest race.
Wednesday, April 7, 2010
The Scrooge Syndrome
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Often older people are in great danger of developing the Scrooge Syndrome and the sad part is it is infectious and can be fatal. It starts with an extremely sober face. This face could scare a small child and convince an adult that conversation is not a good thing. It is often followed by a total inability to give . These people can give of nothing. Not just money, though usually their fortune has been made, be it large or small, but clothing and belongings. They have been known to starve and freeze to death with thousands in their bank accounts or at death their houses are found full to the brim with items others could have used. This is a fatal disease. It eats at the holder from the inside just like a cancer but can be cured by a simple act of kindness or giving which always leads to a smile which warms the inside of that person and starts the healing. This is a hard disease for patient and caregiver. The patient can not see his disease and how it is affecting him and is surroundings and his caregivers often forsake him in disgust.
My hope is that this disease does not spread in this time of hardship for as I know the giving of a dollar brings so many more in smiles and hugs. That dollar can feed a child that day. It can buy a second had book for a child, and buy transportation to the library for an outing. It can help in research for the cures to the truly deadly diseases, and last but not least lift the heart to heaven where God takes the burden away and the warmth begins to heal.
I have found the more I give the more I want to give and the easier it is to find the resources to give. When I think the well is dry and there is no money to be found, God sends more from the oddest of places. I never fail to look skyward and thank Him, whether it be a penny or a twenty and I pass it on. Some have called this "Paying Forward" I call it "Pure Joy."
My hope is that you have been warned of this impending disease and take all precautions to avoid it. Give of what you have to those in need. Go to a walk even in a wheelchair. Get out and let the public see you. Be proud of your years of survival and pay back with all you have. I promise you you will be rewarded and never get the dreaded Scrooge Syndrome...Love Pokie
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Often older people are in great danger of developing the Scrooge Syndrome and the sad part is it is infectious and can be fatal. It starts with an extremely sober face. This face could scare a small child and convince an adult that conversation is not a good thing. It is often followed by a total inability to give . These people can give of nothing. Not just money, though usually their fortune has been made, be it large or small, but clothing and belongings. They have been known to starve and freeze to death with thousands in their bank accounts or at death their houses are found full to the brim with items others could have used. This is a fatal disease. It eats at the holder from the inside just like a cancer but can be cured by a simple act of kindness or giving which always leads to a smile which warms the inside of that person and starts the healing. This is a hard disease for patient and caregiver. The patient can not see his disease and how it is affecting him and is surroundings and his caregivers often forsake him in disgust.
My hope is that this disease does not spread in this time of hardship for as I know the giving of a dollar brings so many more in smiles and hugs. That dollar can feed a child that day. It can buy a second had book for a child, and buy transportation to the library for an outing. It can help in research for the cures to the truly deadly diseases, and last but not least lift the heart to heaven where God takes the burden away and the warmth begins to heal.
I have found the more I give the more I want to give and the easier it is to find the resources to give. When I think the well is dry and there is no money to be found, God sends more from the oddest of places. I never fail to look skyward and thank Him, whether it be a penny or a twenty and I pass it on. Some have called this "Paying Forward" I call it "Pure Joy."
My hope is that you have been warned of this impending disease and take all precautions to avoid it. Give of what you have to those in need. Go to a walk even in a wheelchair. Get out and let the public see you. Be proud of your years of survival and pay back with all you have. I promise you you will be rewarded and never get the dreaded Scrooge Syndrome...Love Pokie
Thursday, April 1, 2010
"Do you Always Shake Like That?"
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Isn't it odd how things happen? When I had a seizure in October of last year, most people including me thought what else? Parkinson's Disease has racked me with pain for four years and nothing they seemed to give me would help. My sleep was impossible to find and my Neurologist finally sent me to a Rheumatologist who decided I had Rheumatoid Arthritis., and more medicine was sent my way, but nothing could keep me out of the wheel chair. One doctor called me a "Neurological Mess" and another said,"You Walk like an Old Lady". I felt like an Old Lady too. But God would not let me lay down. My nights were spent on the couch or in the recliner and in two hour spurts I would sleep, then write, sleep then write, until exhaustion set in and I finally passed out, back on the couch. If I was lucky, my 85 year old mother would not catch me sleeping during the day because if she did she would get right in my face and say"Are you ok?" which proved only one thing I had a good heart if nothing else because the fright from being awakened from a sound sleep didn't kill me. Then came a Neurologist in this area who insisted on heavy seizure meds and the muscle pain from the Parkinson has just about went away.....Now I have a hip that needs to be replaced but that is a totally different pain than Parkinson's....Parkinson's pulls on every muscle and bone in your body. If the pulling and spasms from the pulling didn't wear you out the pain would. Thus I have arrived at a new split in the road and wonder what I will find when I have my hip done. I would jump at this BUT in three weeks I am on my way to something I plan for all year.....The Unity Walk in Central Park. If I have compulsive behavior it is centered around this. everyday and every hour seems to be consumed by visions of NYC and people I have met there. If this wasn't enough there is the book with people to call and books I want people to sign. I walked into the doctors office the other day and a lady said."Oh, dear, do you always shake like that?" "Yes" I said. "I have Parkinson's" and she ducked her head. I just walked off laughing and thought to myself, "I've never been happier in all my life, to which she probably thought,"yes, and she's crazy too." love Pokie
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Isn't it odd how things happen? When I had a seizure in October of last year, most people including me thought what else? Parkinson's Disease has racked me with pain for four years and nothing they seemed to give me would help. My sleep was impossible to find and my Neurologist finally sent me to a Rheumatologist who decided I had Rheumatoid Arthritis., and more medicine was sent my way, but nothing could keep me out of the wheel chair. One doctor called me a "Neurological Mess" and another said,"You Walk like an Old Lady". I felt like an Old Lady too. But God would not let me lay down. My nights were spent on the couch or in the recliner and in two hour spurts I would sleep, then write, sleep then write, until exhaustion set in and I finally passed out, back on the couch. If I was lucky, my 85 year old mother would not catch me sleeping during the day because if she did she would get right in my face and say"Are you ok?" which proved only one thing I had a good heart if nothing else because the fright from being awakened from a sound sleep didn't kill me. Then came a Neurologist in this area who insisted on heavy seizure meds and the muscle pain from the Parkinson has just about went away.....Now I have a hip that needs to be replaced but that is a totally different pain than Parkinson's....Parkinson's pulls on every muscle and bone in your body. If the pulling and spasms from the pulling didn't wear you out the pain would. Thus I have arrived at a new split in the road and wonder what I will find when I have my hip done. I would jump at this BUT in three weeks I am on my way to something I plan for all year.....The Unity Walk in Central Park. If I have compulsive behavior it is centered around this. everyday and every hour seems to be consumed by visions of NYC and people I have met there. If this wasn't enough there is the book with people to call and books I want people to sign. I walked into the doctors office the other day and a lady said."Oh, dear, do you always shake like that?" "Yes" I said. "I have Parkinson's" and she ducked her head. I just walked off laughing and thought to myself, "I've never been happier in all my life, to which she probably thought,"yes, and she's crazy too." love Pokie
Wednesday, March 31, 2010
YES YOU CAN.....
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When I get tired and start to loose my way this little verse starts playing in my head......
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When I get tired and start to loose my way this little verse starts playing in my head......
No matter what the task may be,
How hard the course you face,
Believe that you have what it takesTo run life's toughest race.
I dream and it seems to happen and I wonder when I developed this ability in life. Did it take this last calamity in my life to bring it out or was it always there? I can remember telling my son this when school became almost too hard to bear. I would always say,"Matt, God would not put you through this unless he was getting you ready for bigger and better things." and as time went on he was there for Matt in so many ways. The last race is never run. The highest hill is never climbed. I sleep for a while and and when I start to wake up ideas are already forming in my head. Is this compulsion or passion? I just took a nap for about an hour in the middle of the day. This is something I do everyday after my noon medication and today I woke up thinking, "I wonder if the Christopher Reeves Foundation knows about the Annual Parkinson's Unity Walk? Shouldn't someone invite them? I guess that someone would be me......and that is the way my mind works. Please do not think me over worked or put on in any way. I truly love what I do in every way. And as I wake up from that nap, I never forget that God gave me time to raise my support group in the years before Parkinson's. He gave me some warning signs in the later years to get ready and I took no heed. But when the time came for this Disease, there was never any questioning his path for me. When the doctor would ask do you have vivid dreams, I would always smile......My dreams are the best and yes, very vivid, but they always lead me to something I never believed I could do, no matter what. God has taught me a vital lesson in my older years...BELIEVE THAT YOU CAN AND YOU CAN.......love Pokie
Sunday, March 28, 2010
PROJECT MANAGER
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There is occasion when even I must stop and say some things that have not been said to some one who is always the strong one, and sadly has always been. At the age of eleven, I remember her listening to a conversation I was having with my doctors nurse, "When she said almost to her self, oh no not again, please!". At age nine she had been thrust into having to take care of children while still a child herself, when her brother was born and it was only mom to take after him when mom went to work.....dad didn't do such things and as the plan worked out that little brother was sick for most of his childhood. Then there was divorce and that left my daughter and I , mothers to small kids five and three Even at that time she worked harder than most , stacking wood and cleaning house plus keeping her studies at A and being in sports. All of these things and many more were a part of her world and what was her mom doing but bringing her unwanted babysitting jobs that didn't go away. She was a second mom and soon learned how to make and carry out the large decisions as an at home project manager.
Now She is grown and her family of two are Brendan, age nine and Haley age sixteen. She is a very good mother...much better than me. Sometimes we neglect to tell our daughters and sons this . Just when her life could be no fuller with family in full swing, her job becomes mobile and traveling is a big part of what she does......She does seating for stadiums, the Pittsburgh Penguins, the Orlando Magic, The Kansas City Sprint Dome, and many more. In this field she is one of a kind just as she was in early sister and brother motherhood and later actual motherhood and being a balancing wife.
All this would be enough, but in her prime she is presented with a new problem....a social mom, one who quite often can not drive to her destination. There's Walks and conferences and doctor appointments not to mention all the little things missed like a loaf of bread or a bag of dog food. She delivers these promptly and never says a word. She always reminds me that she's not a hugger and emotion is not her thing.
Well Heidi , My rock of Gibraltar, what can I say. I have loved you since long before you were born, when in Germany your life began.....And though those hugs are few and far between.... when they do come how ever so special they are and how honored I am to enter a room in this our small town and everyone knows you and truly honors and respects you. My alpha female, in this household you'll always be and just know that your mother will love you and thanks you from the bottom of my heart.......Maybe these travel times will allow us to see the times from before when we didn't rush so much.....Step up to the front my dear and take the applause. Your doing a fine job much better than me and when ever you might need me I hope always to be here beside you in every good way , because as I realized this morning how blessed I am that you were born a PROJECT MANAGER AND I'M IN YOUR CREW..... love ya Pokie Mom. Nee, Nay and such
Saturday, March 27, 2010
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I had the pleasure of being a part of the St.Louis Undy 5000 Today and thorough that once again got to spend time with someone so special to me and her field and after we went out to eat last night and I returned to the hotel room this series of words just kept bouncing around in my brain until I put it to paper: STACIE AND ME
We travel our miles just friends her and me.
she's off to Michigan and me off to New York you see.
we're looking for answers, her cancer me PD,
So we travel the miles my Stacie and me.
She sets up Walks, I set up Teams but
regardless of the money it comes in in streams.
For people in pain and once left behind,
For knowledge and caring and hope for better times.
See Stacie and me, we never give up,
Her for Colon Cancer and me for PD.
But not just for those two but so many more
who stand in the wings and wait for our score.
There's Ms and ALS and so many more
just waiting for Stacie and I to open the door
So we travel the miles my Stacie and me
Together as friends we always will be...
Always Pokie.
she's off to Michigan and me off to New York you see.
we're looking for answers, her cancer me PD,
So we travel the miles my Stacie and me.
She sets up Walks, I set up Teams but
regardless of the money it comes in in streams.
For people in pain and once left behind,
For knowledge and caring and hope for better times.
See Stacie and me, we never give up,
Her for Colon Cancer and me for PD.
But not just for those two but so many more
who stand in the wings and wait for our score.
There's Ms and ALS and so many more
just waiting for Stacie and I to open the door
So we travel the miles my Stacie and me
Together as friends we always will be...
Always Pokie.
Wednesday, March 24, 2010
Imagine the World......
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I decided to dream for just a little while and take you along with me. Three years ago, almost to the day a New York taxi cab driver let me off at Central Park at just after seven in the morning on the big Saturday. The Saturday of my first Unity Walk. I had arrived the day before and the walk did not start for three more hours but I could wait no longer at the hotel. I had to venture out. So from La Guardia Marriott to Central Park I rode with eyes as big as half dollars and when he let me out I had absolutely no idea where I was going except I must be in heaven and then I topped the first hill and was convinced. ...Every old hippies dream John Lennon's memorial. I just could not believe that this was the first thing I saw "Strawberry Fields". My mind would not let me stay long but after four pictures and a prayer I was off just following the flow until I saw the Unity Walk sign. No one was there except Starbucks and coffee was free. Two cups of coffee and a quick tour of the site and I crawled up on the rocks to watch the World. Everyone in the World was there.....exercising, running their dogs, reading their papers, just walking and me up on the rocks like a true tourist taking pictures that no one else would take. I have copied and copied those pictures in the past three years and still smile every time I see them...The energy in New York is just unbelievable, especially to a goat farmer from Illinois.
My mission was to find two people that day Michael J. Fox and Tim Horgan(PLM, adm) Neither dream came true but I sure thought it had a couple of times and May May Ali and I talked and my first meeting with the staff of Patientslikeme.com happened. I met Holly Berry that day and Janet Reno and can not believe heaven could be any better. Our team was four that year but I met Marla and her family for the first time and wow...love them so much. I thought $600.00 was so good the first year and then. Last year Marla was co captain and really captain and we made $14,000.00 (13th)......SO GREAT. This year we are standing at 26 members and we started from scratch January 1st and have collected $5000.00 and have a month to go...maybe we have saved the best to last. All I can tell you is my Team Rocks and our enthusiasum could not be higher.....thanks guys love Pokie
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I decided to dream for just a little while and take you along with me. Three years ago, almost to the day a New York taxi cab driver let me off at Central Park at just after seven in the morning on the big Saturday. The Saturday of my first Unity Walk. I had arrived the day before and the walk did not start for three more hours but I could wait no longer at the hotel. I had to venture out. So from La Guardia Marriott to Central Park I rode with eyes as big as half dollars and when he let me out I had absolutely no idea where I was going except I must be in heaven and then I topped the first hill and was convinced. ...Every old hippies dream John Lennon's memorial. I just could not believe that this was the first thing I saw "Strawberry Fields". My mind would not let me stay long but after four pictures and a prayer I was off just following the flow until I saw the Unity Walk sign. No one was there except Starbucks and coffee was free. Two cups of coffee and a quick tour of the site and I crawled up on the rocks to watch the World. Everyone in the World was there.....exercising, running their dogs, reading their papers, just walking and me up on the rocks like a true tourist taking pictures that no one else would take. I have copied and copied those pictures in the past three years and still smile every time I see them...The energy in New York is just unbelievable, especially to a goat farmer from Illinois.
My mission was to find two people that day Michael J. Fox and Tim Horgan(PLM, adm) Neither dream came true but I sure thought it had a couple of times and May May Ali and I talked and my first meeting with the staff of Patientslikeme.com happened. I met Holly Berry that day and Janet Reno and can not believe heaven could be any better. Our team was four that year but I met Marla and her family for the first time and wow...love them so much. I thought $600.00 was so good the first year and then. Last year Marla was co captain and really captain and we made $14,000.00 (13th)......SO GREAT. This year we are standing at 26 members and we started from scratch January 1st and have collected $5000.00 and have a month to go...maybe we have saved the best to last. All I can tell you is my Team Rocks and our enthusiasum could not be higher.....thanks guys love Pokie
Monday, March 22, 2010
Help Purple Day
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Conceived by three smart cupcakes at the Anita Kaufman Foundation (AKF), Three Great Purple Cupcake Project is a sweet epilepsy awareness initiative supporting Purple the Day (March 26th) . During the week of March 26th AKF is inviting bakeries and cupcakeries across the United States to feature PURPLE CUPCAKES in an effort to promote awareness of a condition that effects over 3 million Americans.
Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people from around the globe wear purple to promote awareness about epilepsy. Purple Day was founded in 2008, by nine year old Cassidy Megan of Nova Scotia, Canada. Motivated by her own struggles with epilepsy, Cassidy started a day in an effort to get people talking about the disorder and reassure those with seizures that they are not alone. she named the day Purple Day after the international recognized color for epilepsy, lavender.
How can I help? Giving back has never been so simple.......for the week of March 26th NOW...go to your bakery and have them feature some purple cucpakes................these are the links for information on donations and display www.purpleday.org. and www.akfus.org.
AFF also invites schools and businesses to host purple bake sales. Sell sweets and raise funds for Purple Day.
To join the Great Purple Cupcake Project, contact:
Michelle Caplan, Partnership Executive
The AnitaKaufmann Foundation - US Sponsor of Purple Day
407-967-1450
michelle@arkfus.org
Purple cupcakes + Epilepsy awareness + Helping a deserving cause = SWEET!
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Conceived by three smart cupcakes at the Anita Kaufman Foundation (AKF), Three Great Purple Cupcake Project is a sweet epilepsy awareness initiative supporting Purple the Day (March 26th) . During the week of March 26th AKF is inviting bakeries and cupcakeries across the United States to feature PURPLE CUPCAKES in an effort to promote awareness of a condition that effects over 3 million Americans.
Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people from around the globe wear purple to promote awareness about epilepsy. Purple Day was founded in 2008, by nine year old Cassidy Megan of Nova Scotia, Canada. Motivated by her own struggles with epilepsy, Cassidy started a day in an effort to get people talking about the disorder and reassure those with seizures that they are not alone. she named the day Purple Day after the international recognized color for epilepsy, lavender.
How can I help? Giving back has never been so simple.......for the week of March 26th NOW...go to your bakery and have them feature some purple cucpakes................these are the links for information on donations and display www.purpleday.org. and www.akfus.org.
AFF also invites schools and businesses to host purple bake sales. Sell sweets and raise funds for Purple Day.
To join the Great Purple Cupcake Project, contact:
Michelle Caplan, Partnership Executive
The AnitaKaufmann Foundation - US Sponsor of Purple Day
407-967-1450
michelle@arkfus.org
Purple cupcakes + Epilepsy awareness + Helping a deserving cause = SWEET!
Sunday, March 21, 2010
Purple Day Photo Gallery - Purple Day Everywhere!/Awesome T-Shirt design developed by Chris at Epilepsy Support Centre in London, Ontario, Canada
Purple Day Photo Gallery - Purple Day Everywhere!/Awesome T-Shirt design developed by Chris at Epilepsy Support Centre in London, Ontario, Canada
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Purple Day Photo Gallery - Home
Purple Day Photo Gallery - Home
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THIS IS MY NEW LOOK
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It's not perfect but neither am I. I have tried several things and through going back and forth all night this is the result. It is now one in the morning and after a nap and getting up and the blog was still full page I have accomplished something...A PLUS though a little plus in life's journeys. Speaking of journeys,I am starting on a huge one and taking a rather large crowd with me. Unlike last year when we all showed up on Saturday and then were gone, this year I have choreographed four days in New York City, all the way down to the rental of a wheelchair for three days. I've checked people on my team for tee shirt sizes and made sure they got the right hotel. Planned a get together for this organization and that. Plotted a supper for PLM members for either Friday or Saturday evening and still hopefully left time for me and New York City to embrace as we did last year. It always seems impossible to me that I can love this city as much as I do.I love the energy and availability. Everything is right at hand. Last year one daughter went with me and this year both daughters are going. I hesitate to say this will be my last trip. At one time I thought it might but things are looking up again and I have so much more I would like to see here. But for now let me tell you about my team Team Patientslikeme at the 16th Annual Parkinson's Unity Walk in Central Park on April 24th at 10:00am. We are now up to 27 members and have collected $4000.00 and have a month to go. This may not seem like much to you but this was started from nothing and grows daily from heaven. The team is so excited they can hardly contain their selves on line. Patientslikeme has furnished us with team tee shirts and we will be strutting our stuff for sure. We are bringing our families and inviting friends and crossing communities because......these cures can not be won by just Parkinson's or just ALS or MS but a combined effort from all of us. I have not only Parkinson's but Epilepsy and Acute Arthritis and have invited all groups plus Francesco Clark, Spokesperson for the Chris Reeves Foundation to come. We need to all hold hands in what ever fashion we may to be united in improving our health and well being in this time of health care strife. Wheel chair, to wheelchair, walker to walker, smile to smile......What a day! If your in New York come and visit. We may be slow and some are bent, We may have tremors and speak quite low. We may be very emotional and hug a lot; but our hearts are huge and our minds are good and our ability to be good company is unsurpassed...love Pokie
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings
It's not perfect but neither am I. I have tried several things and through going back and forth all night this is the result. It is now one in the morning and after a nap and getting up and the blog was still full page I have accomplished something...A PLUS though a little plus in life's journeys. Speaking of journeys,I am starting on a huge one and taking a rather large crowd with me. Unlike last year when we all showed up on Saturday and then were gone, this year I have choreographed four days in New York City, all the way down to the rental of a wheelchair for three days. I've checked people on my team for tee shirt sizes and made sure they got the right hotel. Planned a get together for this organization and that. Plotted a supper for PLM members for either Friday or Saturday evening and still hopefully left time for me and New York City to embrace as we did last year. It always seems impossible to me that I can love this city as much as I do.I love the energy and availability. Everything is right at hand. Last year one daughter went with me and this year both daughters are going. I hesitate to say this will be my last trip. At one time I thought it might but things are looking up again and I have so much more I would like to see here. But for now let me tell you about my team Team Patientslikeme at the 16th Annual Parkinson's Unity Walk in Central Park on April 24th at 10:00am. We are now up to 27 members and have collected $4000.00 and have a month to go. This may not seem like much to you but this was started from nothing and grows daily from heaven. The team is so excited they can hardly contain their selves on line. Patientslikeme has furnished us with team tee shirts and we will be strutting our stuff for sure. We are bringing our families and inviting friends and crossing communities because......these cures can not be won by just Parkinson's or just ALS or MS but a combined effort from all of us. I have not only Parkinson's but Epilepsy and Acute Arthritis and have invited all groups plus Francesco Clark, Spokesperson for the Chris Reeves Foundation to come. We need to all hold hands in what ever fashion we may to be united in improving our health and well being in this time of health care strife. Wheel chair, to wheelchair, walker to walker, smile to smile......What a day! If your in New York come and visit. We may be slow and some are bent, We may have tremors and speak quite low. We may be very emotional and hug a lot; but our hearts are huge and our minds are good and our ability to be good company is unsurpassed...love Pokie
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