Wednesday, April 21, 2010

The Little Team From Nowhere
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January 1, 2010, we did not exist. Though somewhere in the hallways of, 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 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

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 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

PatientsLikeMe: Tell the World About Parkinson's Disease

Monday, April 19, 2010

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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 scooter, or wheelchair or powerchair...that is the question. And last but not least, names....yes 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, 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 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 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 Pokie

Saturday, April 10, 2010

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I 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 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.

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

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

Today With PokieToo and Parkinson's and Acute RA Disease