Sunday, January 31, 2010

Seventy Nine Days Untill New York City
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Seventy nine more days and I'll be in New York City.  You wouldn't think I would have any fondness at all for downtown Manhattan, but I am in awe.  I am very sure this will be my last trip to the Walk and yet at this time I am not sad.  I have experienced so much and everyday seems to be just that much more. .. all of which is something I never dreamed of before.  Every morning when I turn on the TV the memories come flooding back. I think gosh I've been there and saw that and loved it.  Maybe I should have never been the old lady off the farm who ventured to the big city.  I can only tell you the city and every one I met along the way were fantastic. From the gentlemen who held my hand and started to cry while I told him my story on the plane.  How about the way he disappeared in the airport? And how about the taxie driver setting me out at the monument to John Lennon.  Common to him, left me awestruck at six in the morning and of all the places to sit an old hippy off in Central Park?. How about on the flight in and we are flying up the Hudson River and the captain is telling us the sights to look for?  We round the Statue of Liberty and line up on Broadway and he says, "and there are the Trump Towers and for the Little Lady in Isle 13, Good Luck at the Walk Tomorrow that is Central Park." That little lady was me and the tears sure fell.
I'm sorry but despite my noticeable handicaps at the moment, I am so lucky for all the places I have seen and the people I have met.  Not scheduled appearances.   God made adventures JUST FOR ME.. Why he singled me out to be so blessed, I have no idea but I am sure it brought a smile to his face when I saw Central Park for the first time....Thank you Lord  Love Pokie 

International Square #2
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

This is my first square and as you can tell it has a Christmas theme. This is only stage one Now starts the fun part. it heart and soul.  My grandmother use to be sure there was the tiniest drop of blood on her quilts in a out of the way place and she believed that gave them heart and good luck. Sometimes I sew in a penny laminated so it won't fade out on the material but there none the less to bring good luck. In this panel the trees will get decorated and Rudolf will get a nose. The teddy bear will be called "Hugs" and the sleigh and reindeer's will have a gold harness and trappings and the gifts will carry signs important to Parkinson Patients like Hope, Cure  and Faith and then it will be done  Just in time to start another one before July.
Don't you think you could do this? Couldn't you use markers or paint if you cannot sew? Why miss out on the fun and enjoyment because you thought you might not when really you could.  Go to this link and read all about it.It's simple to do and if your a member of you can join our efford just let me know on the site....Best of Luck   Pokie

Friday, January 29, 2010

Quilt Panel #1 From for the PDF Quilt Project
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Isn't this gorgeous? It is the first panel I have received as we accumulate for our quilts for which we are making panels 2 ft by 2 ft to make our statement for Parkinson's for Parkinson's Disease Foundation Quilt Project. By going to , you may find you too have a story to tell and a panel to make. It may be your story or the story of a loved one. It may be the combined stories from a support group, or even a donating company...Sit and look at this panel and feel it's love...The inscription says "I have PD.  I have COLOR in my SOUL."  Yes she does   love Pokie

Wednesday, January 27, 2010

A Twiddley, Diddley Dee......Isn't Me?
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I mopped the kitchen floor today while sitting in a wheel chair and considering the end result, which was a much cleaner floor and a sparkling kitchen it wasn't all that bad.  I also mopped the bathroom floor and by then had discovered it really was quite easy to do. I must have looked done in at the hospital because they wheeled me around from xray to lab and the front door...all of which I greatly appreciated.  Then on to the laundry and something was learned there too. I have discovered a bag that holds just enough cloths for one load of cloths.  I load it up and that is all I take.  I use the soap with softener in it and pour enough in a ziplock bab for one load.  All fits in the bag and is not all that heavy and helps free up my hands..  One load is all I really feel like messing with anyway..  That accomplished I ran through Wendy's and picked up Grandma and I a salad for lunch and headed home really proud of myself for what I had accomplished on an OFF DAY.  I made it home by noon and headed for the pill case .  Replenished both me and my supply as well as grandmas and snuggled down in the recliner for what you would have thought was a long winters nap. Two phone calls later I was sound asleep for at least three hours..

If this sounds boring to may be but really I have come a long way and am learning all the time.If I am to be able to stay in my home with my mom as this disease progresses, so many changes have to be made.  These changes are made when I have absolutely no strength to do them. My family only sees me as they wish.  The mom who was always running from one place to the other and at least ten steps ahead of everyone else.  Those days are long gone .Steps are a torture in any form as anything that has to be carried in front of me, never even gets picked up. Meals are cooked from a wheel chair which is not bad once I got my kitchen the way I  wanted it. The last hold out is my bedroom and then my living area will be done.  I will need help with this. My poster bed and the paint on the walls and the position of the bed as to be handy to the outlets ...This will be a project I know my kids will love but Oh well life is good , Huh?   Love Pokie

Tuesday, January 26, 2010

I Cannot Get Them All In The Boat
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Recent;y a  close friend of mine and I were talking and she was telling me of a dream her husband  was having the night before. She woke him up while he was thrashing around yelling "I cannot get them all in the Boat."  I know the feeling well. I brought it on myself.  One day I am working on  quilt squares for PDF and the next day I'm working on contributions for my team Team Patientslikeme for the Unity Walk in New York.  Spice in my team I am trying to form for the Colon Cancer Walk in St Louis in March and "Yes I cannot get them all in the Boat."  But to my amazement, they all seem to be holding their own and growing.  Another of my new friends brought it to my attention that he was not into the fund raising side of Parkinson's.  He was only interested in living his life to the fullest each day for as many good days as he had.  He prayed for a cure and did follow the research but did not actively advocate asking for donations or attending walks.  Walks, to me, go somewhere past fund raising .It's the being together for a day that shores us up for another year knowing full well that that might be our last year.  This might be my last year to get everyone in the boat and if it is at this time next year I will be lost.The need to be a part of a community and participate is something Parkinson's tries so hard to take away from us and attending a walks replaces. A heart to heart talk with Janet Reno while holding her hand, a hug from May May Ali, searching the crowd for Michael, these are the things that in the years of Walks 17, 18, and 19 some us will be at home quietly smiling and clutching our tee shirts. At this point in time the money will make no difference only the memory. But to someone we saved the money made a big difference.  Please give just a little and :"climb in the boat."   love ya Pokie

Friday, January 22, 2010

Thank God For Recliners
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I never thought the day would come that I would hear myself utter these words but here they are, "Thank you Lord for this recliner."  I have been trying to adjust to some new seizure meds and the shakes are terrible.  In retaliation I retreat to the recliner where you can find me hours later sound asleep.  I realize I would not sleep if I did not need it but this is just ridiculous. There is no way I can keep up with this pill pace. The Arthritis doctor has me taking four pills once a week,.two in the morning and two at night, now if I can only remember what day of the week I took them in the first place.  The Neurologist has me taking one large pill twice a day and these small pills starting at 25 mg and working up to 300 mg. at bedtime. which would be ten pills.... meanwhile I have four sinemet and three requip to take along with one Hyzaar and one lipitor.....Now Please This is Rediculous....I think if you are expected to figure out how to take this and eat too you should be admitted.  You surely are not expected to function in todays society. My 84 year old mom has been HELPING ME ....really. She cleaned the front sidewalk yesterday and then we ate lunch which I had made with the aid of my wheel chair....making extra so she can snack if I am sleeping when she gets hungry.
There are some funny things going on here. I get my sleep machine next Wednesday, and really must be needing it. I woke up awhile ago and my cat was laying on my chest with his arms around my neck staring at me. Scary event for me but must have been scary for him also.
Surly I will get all of this straightened out soon.  It seems like an insurmountable task just to stay alive when only four years ago I was taking nothing but Tylenol.. Those who function outside the cronic patients world have no idea some of the things one must go through.  Every medication, even potassium must be checked as it comes from the drug store. Why? The color now may be the same and the sizemay be the same but they may be time release instead of regular and the dose is changed; and the , doctor, drug store...did not get it straight. Then you take to much and your prescription runs out too fast and you get sick and the pharmacist says, "I don't know"  Meanwhile as you travel from new doctor to new doctor and the medications change, a drawer fills with medication that is never used in this day and time when people are going without because they cannot afford what their doctor prescribes.
As I ramble on through this and possibly make no sense at all, I realize I have the recliner to be thankful for and decide a glass of forbidden tea and a couple of cookies for comfort food will tide me over until the next pill time and maybe I will wake up in a better Pokie

Tuesday, January 19, 2010

Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I checked in this morning, as I always do, and ..... look at what we have received in donations for Parkinson's Research this Year and it's January!  $154,453.00. You go PARKINSON'S UNITY WALK! One Hundred Percent of all donations go to research....Please, so much has been accomplished in the past year through your help and donations now is crucial to a cure.

This week will be be very important to our team TEAM PATIENTSLIKEME . Emails are ready to go out and letters are being written to ask for team members. I even had interest in my high school alumni newsletter yesterday and hope to will be running a series in our home town paper. PBS TV had a special on the human spark and how it made the difference in our lives.Why do some people faced with adversity go so far and those faced with no adversity do so less? As I watched this I just knew Parkinson's could be one of those sparks for some. For me it is a passion to use all the energy I have to reach that next person that can help Parkinson's. As patients we need personal contact....something that is immediately shut off from us if we have no caregiver.  Transportation stops and home bound begins....NO, NO, NO. We must band together as best we can, and attend these walks.  We must be seen to the World.  This is Parkinson's in All Ages, be it young or old. The whole concept of Parkinson's is assumed that we don't want to go, that we don't want to make new friends.The best way to bring a smile to a PD patients face is a smile and a hug, a walk in the sunshine...a good seat to watch life go by...well here I have wandered off againCheck this web site out and make a donation out to our team.  Even $5 is accepted  love pokie

Monday, January 18, 2010

Francesco Clark......Never Gave Up
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Setting
I made an unexpected friend this week while half way nodding off in my recliner.  I make it a practice to take my four o'clock medication, turn on television and usually take a nap for a couple of hours. This evening I was following the plan and had the television set on PBS (my favorite) when all of a sudden I am listening to this young man describe my pain in my arm and the machine he had used to get his mobility back.  This is  odd enough that I caught this but as the story progresses it is just another one of those things where you know God was sitting on the couch laughing as he made things happen to MY amazement. Francesco, was  a spinal cord injury patient young and severe. In his PBS interview, I caught a glimpse of him using this machine like an upside down bicycle and explaining how he had gained the use of his arms back.  Through this increased mobility he was able to build a successful Botanical s business called  CLARKS BOTANICALS . Normally one would look up the PBS show and the him and try to find the product....No problem here.  For the last three days FRANCESCO CLARK and Pokie Too have become email friends. He has answered my questions and sent me information on not only his line of product but the exercise machine, The Giger Md he used....I was very impressed with this young-mans business sence and actual caring. His web sit is and his product is great and so is Pokie

Saturday, January 16, 2010

Old Hippies Walking
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

When you travel to the Parkinson's Unity Walk in New York City this is one of the things you will find to mark your day with pride. At the famous Tavern on the Green stands a huge topiary of an elephant surely to bring good luck to all who pass him by.  It also means other things. The first year I walked, I turned to Tom and said, "I made it" and he said, "Nope, Poke you have another mile to go." I grabbed his wheelchair and we were off as fast as I could go before I ran out of steam.  Last year it was over ninety and people were dropping from heat exhaustion. When I saw them at one mile I knew I was done. This year I will be the wise walker and take it slow and easy .Both my daughters are going with me and I would like to make the finish line, again. My tickets are bought, as I said and I am once again making my plans for glorious New York City. Team Patientslikeme .is gaining members everyday as is our donations.  You would never know from the chatter between us on the site that we are considered chronically ill.  These are the things that keep us going. We have to have interaction. For so many years Parkinson's Disease was considered a death sentence. Once diagnosed the patient was shipped off to the nursing home and never heard from again. Did you know we can smile and laugh, sing and sometimes dance.  We can sew and do crafts and we can tell stories in many forms.  We are your history and ancestry.  If we are not cherished and allowed to flousih in our older age, it is the nation that looses.  Our viewpoint as "Old Hippies" was responsible for the end of the Vietnam War.  Could those same hippies have enough to say today to save the World?  My brain is still good but my legs are failing, yet once a year, in April I travel to New York City with all I can muster up and I celebrate Parkinson's and it's Patients.  I clebrate our gains for the year.  I celebrate the friends I have made and the new bonds I have made with my family as they struggle to understand this disease. My worry is the teen generation.  Are they listening?  Do they care that this disease and many others are coming at them with lightning speed?  Everyday someone younger is diagnosed with Parkinson's, or MS or ALS and there is NO CURE....Could grandma have given them some insight as to what was coming and how to handle it,.... had they only listened?.Would they be able to realize that grandmas faith was a detrmining factor in her survivial and theirs?  Would I have listened at their age? I think I did and I think I made a difference at Woodstock and FairAid.  I believed in the Kennedy's and Martin Luther King.  I had a dream and a passion..I had a good life and raised good kids and now have Parkinson's Disease and with that same passion I fight for a cure and pray for the World  love Pokie

Wednesday, January 13, 2010

The Plate is Full.....

The Plate is full
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

TEAM PATIENTSLIKEME  has it's first donation this morning in the amount of $100.00.  I have my hotel and flight tickets for New York City and I cannot tell you how excited I am. New York City will have me for extra days just because I am so fascinated  by this town.. I can only pray my health holds out until April 14, 2010.  This morning I am having my third EEG in three months. The purpose is monitoring  my brain for scar tissue. I had a grand mal seizure on October 7 and came right back knowing that this is the busiest time of the year for patients who advocate a cure.  Not only Parkinson's but Colon Cancer in St.Louis on March 27, and mingled in with that is the World Parkinson's Congress in October and it's PDF QUILT PROJECT of which I am a committee member. I guess you can guess your life away at this point, but I wish I could travel daily and get the word out there and know beyond a shadow of a doubt I was making a difference
I am so proud of my team , Team Patientslikeme.  .Last year we come together from all over the United States for a chance to hug and hold hands and spend one day together helping each other fight our battle with this disease. You cannot go without crying and yet your heart is souring somewhere in the clouds.  I have never felt anything so spiritual in all my 63 years.  The first walk I stopped one of the walkers from PLM. (we only had four) and said, "Tom, we must pray" we stopped and  together the four of us lowered our heads and over two thousand people behind us stopped and prayed too.  This disease will never take that moment from me.I have listened to so many people say how upset they were that this disease had come to them and they wondered how God could have brought this their way.  Yes, it is so dibilitating and nothing is worse than loosing your brain bit by bit, yet as bad as this is look at the thousands of friends I have made and the experiences I have had.....I would have never known they were there. Pray for my continued journey and that somewhere along the way I meet the person that is carrying the cure. Maybe in our chance encounter the world can be changed.  All my love Always   Pokie     

Tuesday, January 5, 2010

Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

 I started the New Year off right today as I visited a new Neurologist in a nearby town. After almost four years with my past one, I had more than one regret today as I entered his new office.  With the new diagnosed Epilepsy, I could no longer travel to St.Louis and back in a days time from my part of the country. especially with me driving. He seems to be an excellent doctor and even let me know he was on the internet. I exchanged business cards with him and we were off.  He was telling me I had too many things  wrong with me and we were having to decide what to treat. There were also things he didn't treat and didn't want to waste his time on like, diabetic problems and arthritis.  So seizures and Parkinson's were next.  Of these two he said not everything could be grouped under Parkinson's and he had no idea why I had a seizure...he would treat it and hope it did not return ..ever. Now with the Parkinson's New meds were in order and quantities remained reduced. This will be the year I get this pill thing in order.  Thirty two pills a day is ridiculous for anyone, whether they have my diseases or not. If I can some how replace most twos with ones I will be so happy.
He gave me a new guide book featuring Holly Robinson Peete from the Hands Book.  Excellently put together with a tape included.  It covers the medications for Parkinson's Disease, causes and effects.  It is published by Teva and once again I think excellent short reading.
I think this Neuro is one of the best in the area and will do the best he can.  He did say he would not give me false hope.  It is aN incurable disease at the present and has been for a long time.  So the best I can do is fight with all I have an do it on as little sinemet as I can because I am looking at a long fight.  his is not the first time I have been referred to as a bAby with this disease. I can only pray for those who are getting diagnosed with this in their twenties. Those of us who are able to talk must fight this for those who can no longer talk.  Those who can walk must walk to places those who cannot will not be able to go.  And those of us who have a few extra dollars must spend them for this cause.  SAVE OUR GRANDCHILDREN pokie

Friday, January 1, 2010

New Projects For a New Year.....
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

 My plate is pretty full at the moment as I have found is normal for a "Parkie" this time of year.  Most seem to go into hibernation when it gets cold but if you are an advocate for Parkinson's, January 1, you start preparing for April and Parkinson's Awareness Month.  My mail box is crammed full each day with news letters and new ways to help find a cure for this dreadful disease. Since last year I have added several more causes.  Epilepsy is one and Colon Cancer is another.  Not to dwell in the past, but, last year I went full out and when April got here and I was in New York City, I was exhausted and could barely walk.  I have learned my lesson and hope everyone keeps reminding me that there are only so many days in a month and hours in a day and rest is needed to survive and enjoy.....Yes, Lord I am listening.

This year, of course is our Team Patientslikeme at the 16th Annual Parkinson's Unity Walk in NYC.  This will be our third year and hope to have 50 to a 100 walkers.  Last year we had around 35 and the year before we had four.  We are hoping to have a fantastic wekend in NYC from all over the U.S. and for donations ...we raised almost $20,000.00 last year  for research and hope to do that again or double it....Mark this on your calendar if you are going to be in NYC April 24, 2010..16th Annual Parkinson's Unity Walk  100% of all donations go to research and we have received $125,873.00 already .  Thank you, thank you, thank you..

Next on my agenda is the Parkinson's Quilt Project, This is close to my heart also but in another way.  This is tangible to the patient.  His pride is touched as a panel is made to venture to Scotland in October 2010 for the Global Parkinson's Conference.  Individuals, groups, survivors and loved ones are banding together to make quilt panels from anything permanent to be on display there much as the AIDS quilts were displayed in the seventies. Contributions can be made through PDF an deach panel costs $25 to register...My personal page is listed under Charlene Pryor and I will be previewing pictures of the panels as they come through.  Wish us luck, this is a huge project.

Next is my concern for the colon cancer community.  We are looseing patients to this disease in alarming rates and the patients like Parkinson's get younger and younger.  This coming year there will be 5KWalks all across the U.S. for reearch and awareness and I am so happy to announce  these walks will be directed by a dear friend of mine for the Colon Society. In St.Louis Missouri, March 27, 2010, is one of these get togethers....If you are down in this area please come and spend the day.  We are expecting big things in this area.  St.Louis always comes through for Cancer.

Now las but not least I would like to thank all who have followed and nurtured me in the past year.  Thanks to the countless numbeer of friends and aquaintances I have made.  Thanks for the knowledge and direction you have sent my way and the donations to research you have made in my honor.  I am so humbled that God has presented me with this challenge and showed me how to handle it....Gandi once wrote: "It matters not how strait the gate, How charged with punishment the scroll.  I am the master of my fate:   I am the aptain of my soul."  God gives us the gift of life and what we do with it is our doing.....Make Him Pokie

Pokie and Pokie Jr.      Blessings are everywhere!!!

Today With PokieToo and Parkinson's and Acute RA Disease