Tuesday, June 29, 2010

Gypsy Rose

When I was ever so small, my grand mother Brockmire took to calling me Gypsy Rose. I was one of so many grand kids she had and she use to sit me down in the afternoon when I could not take a nap yet all the others seemed to have no trouble and say,"Gypsy Rose, gaze into that ball and tell me your story" and I would come up with some concoction just anything to get out of a nap. That early in life I was able to run away and hide in a play world. I suppose I never stopped doing that. This could be a good thing in times of extreme stress. It allows the brain a little time to regroup. If the memory was to bad it just went somewhere in that brain where it no longer frightened me. My grandma believed my brain was special, though just a little off to the left and somewhere that got tucked away until yesterday. She lived a rough life. She raised 10 kids during the depression with a husband who in later years developed Alzheimer's. Grandpa was an unemployed carpenter and would just take off walking to Egypt Mills to find work. My grandma would call my aunt Luella and we would go to find him and give him a ride home. She knew me pretty well but never tried to change me. She died when I was sixteen and never got to see the true Gypsy Rose come out in me as my 'Ol Hippy days emerged. Travel always called me to the next adventure and I see now that even then my brain was not as others but luckily the "Rose" side stepped in to smooth things out. How could she have known this in her point in time? She had a staircase with an ever so tiny air opening into the dining room. I use to sit there and watch her in the kitchen. She'd never let on like she saw me and then would say,"You done dreaming?" "Come down for some koolaid." Sixty three years later I find people who excepted me with all my faults. In that day and time I don't think children were so harsh. One would take care of the other. Don't get me wrong. I have always been the caregiver, but some times there has to be a rose in the flower bed to keep people from walking through and smashing everything and I guess that has been me , on occasion.
My Neurologist tells me I was born with Epilepsy and should have out grown it but never did just developed more somewhere else.You know what, I no longer care. I am what I am in that flower bed and those thorns may come in handy fighting for my causes. The gypsy I hope will keep me moving....and moving and moving. Thank you Grandma Brockmire for all your insight into a little girl with freckles who just loved life real or made up.....love Pokie

Thursday, June 24, 2010

Big Little Steps

Tomorrow at 6am i set out to conquer all my shadows in one large swoop before it's too late. After forty five years I am returning to my home town for a class reunion. Nothing against anyone in my class and nothing against the town but it seemed every time a reunion came up I was pregnant or going through a divorce. Nice excuses huh? Inside I still didn't see myself as good enough, pretty enough, fancy enough and wealthy enough to return. Isn't it funny it took Parkinson's Disease, Epilepsy, aging and extra pounds to bring me to my senses. none of that ever should have meant any difference then or later and sure means absolutely nothing now. I wonder what I could have done if God would have given me this self confidence at twenty or even forty. Oh no, he being the joker he is, gives it to me at sixty three where every thing I do I have to work for....nothing comes easy except the unexpected. I never fear I'm not going to make it. I might run out of time or he might just keep me around until I get done, if there is a done. Almost everyday I sit on the edge of my bed and wonder how I am going to face a new challenge and by the end of the day he has gotten me over the hurdle and on to the next. It's like in high school, I could never watch or run the hurdles because I was petrified of falling in the cinders....and now I do hurdles everyday and fall around like a clown. I use to cry if I had to read a paper in front of the class and now you can't shut me up. My car guit on me and mom on the interstate about a month ago and I was in no hurry to repurchase because of the seizure in October. Then I decided that was silly and started the powers to be looking for a Tahoe to get up my hill with leather seats and on star just in case but before it gets here I rented a car for this weekend and I am taking my first major trip on my own since last October...I know I can do it I just have to prove it to not only myself but my family. I don't remember all this proofing at any other time in my life. I probably just didn't pay any attention, but right now I am learning so much more daily than I ever learned daily in college because I want to learn...and every minute is precious because it is here.....thank you and whohoooooo love Pokie

Wednesday, June 23, 2010


I worked all day today on a project I should not have been doing and knew it. Cleaning out a closet in my bedroom and reorganizing in hopes of increased fung-shi and increased sleep. I started at 5am and as with true compulsive behavior, I just kept going till supper tonight. Two steps and sit down, Sit on the bed and vacuum the floor. Scoot the boxes with my grabber down the hall. i was so proud of what i had accomplished. This may be normal for some but not for me. I have my cloths all hanging in one direction and color coded NICE but when I went to lay down and try it out. I still could not roll over. It hurts my left arm. I was extremely uncomfortable. So after all this work which will render me useless tomorrow i am back to the couch. There I have no trouble getting comfortable can roll and my arm does not hurt....go figure. So I have a guest room now if anyone wants to come and visit love Pokie

We're Not In Kansas Anymore

October,2006...June,2010. 267-5011. Just figures or dates that mean nothing, not hardly. October 2006 was when I signed on to http://patientslikeme.com/, knowing nothing about on line forums, expecially those that dealth with medical issues. 267 was the number of profiles of patients with Parkinson's Disease on the site, then, but only about 10-20 were posting on any given day and often much less. June,2010 is obviously now and 5011 is what we have grown to in such a short span of time. The threads have widened and often become complicated but this shows the true interest and love for this unique forum. We span not only the U.S. but foreign grounds and the mixing of all those diverse cultures took some time and still is taking some time to perfect. Unlike any other site I have visited,there is a since of community and famiy, where you feel you belong and others really care. Congraulations http://patientslikeme.com/ for the site you have produced, the code of ethics you continue to follow, and the storehouse of information you continue to furnish those who have trouble finding it on their own love Pokie

Tuesday, June 22, 2010

A Happy Camper

That's right "a Happy Camper." I used to ask someone how he was doing every time I would see him and every time he would reply, "Oh,I'm a happy camper." He never missed a time. Some thought of him as a grouch, I loved him and he may have had it right. Everyday he did what he loved and was happy for it. That's what I have been doing...Writing, writing, writing....about anything and everything. and my grandson turned two this weekend and we had such a great party at his other grandparents home. We socialized from all ages and even had water ball fights in the back yard..lots of laughs and hugs..right down my alley. My effort to reorganize my home this summer while I can sell, give away and burn is going well. I want it all done before winter sets in. You might think I have plenty of time but you don't realize just how slow I move. I got a new vacuum that moves with a finger so I can push it with my wheelchair if need be. My PDR'S for my Parkinson's, as of this morning, are 22, which is fantastic! and this weekend I will be going to my first class reunion in 45 years...I don't know what has happened, but on returning from New York a new fire seemed to have been lit and I just have really been busy but in that busy getting things done too. All of this behavior is so not Parkinson's. We procrastinate and sleep alot and feel down and hurt, all of which leads to an under productive day. No matter what the reason I hope the Lord continues to let me "Camp"on this campground surrounded by my friends and loved ones...I am having a blast Pokie

Monday, June 21, 2010

The Value of the Internet

A year or so ago this very funny gentlemen called from Texas to let me know him and his wife Marty would be coming to Missouri and since I was on the Interstate in Illinois could they treat me to a cup of coffee. My answer was a resounding yes. So maybe you are wondering what is so extra special about this. Well, Victor (V-Wig) , and I are members of an ever increasing number of chronically ill patients who have met on the internet and at some point travel to meet each other. Five years ago this would have been unheard of and even in 2008 when I made my first trip to Atlanta by car fom Illinois with a preplanned list of people to meet from our site Patientslikeme.com, my children raised one "x@!?> of a fight about me heading out on my own o meet total strangers FROM THE INTERNET.....well total stangers they were not. As you can see by this picturem we were quite happy with each others company and had never met before that day but had spent endless hours discussing our illnesses and clowning around with no one to tell us we were just to sick or old to do "That." We would meet for virtual "Coffee" in the morning before we started our day. One morning we went step by step as one of our friends took us through charging up her DBS System in chat. We're not looking for dates (husbands or wives) just a hug across the miles for both patient and caregiver. Victor and Marty have been happily married for years for sure.
Then there is a little gal I meet off and on when her family are traveling from Montana to the East Coast to visit her family. They pull their mobile trailer on to Walmart parking lot and give me a call. I go pick up a bucket of chicken and all the fixings and when I get their Jodi, her three daughters and her husband have the string lights up outside welcoming me in for supper.
In 2008 I traveled to Denver to a Davis Phinney Meeting and met one person from the site then flew on to California and stayed with another and one came down from La Honda and we all traveled around San Francisco for a couple of days. I went to Atlanta and stopped twice to meet two members and their families. In Atlanta I met so many more at the YOPN Conference.
Then off to the Unity Walk that year and so many from the site and last of all that year to Indianapolis, Columbus and Cleveland for a week to celebrate a 76 year old dear friends birthday in the winter.
To some this seems so silly. To just throw this money away. It is never useless folly. I'm not rich by anymeans, but I really know how to save and so save I do. The smiles and hugs are worth all the gold in the world to me and I suppose they are to those I visit also. Just to be able to talk honest , face to face with someone who is going through what you are after you have become such close friends on the Internet is so, so special to all of us...Pokie

"Not On My Watch"

Here we are and it is Monday morning. We are starting a new week . Let's start a new attitude ....Clean, clean clean. We can no longer trust our health care providers to treat us in the cleanest and most sanitary fashion. This is not the eighteen hundreds and we are not in the middle of "Little House on the Prairie". Diseases exist that there is no cure for and they lurk in hospitals where you once went for safety for a cure. They lie in waiting for the unsuspecting patient who believes their environment is clean and safe. Far to often a patient goes in for elective surgery and dies from infection during or after their stay from waht is called HAI or Hoapital Associated Infection This is preventable. Never let a doctor or nurse touch you without first washing their hands or disinfecting them... and you do likewise as should your caregivers who are staying with you in the hospital. Keep the gel and wipes with you at all times and use continually. For more information please go to http://hiawatchnews.com Be safe...Use wipes...Love ya Pokie

Saturday, June 19, 2010

Ah, Blessed Peace and Quiet

All sixteen quilt panels made it safely to New York City today with their stories attached. I have slept and ate with them for many months and now am at quite a loss. This always happens. It's just me. I throw myself into a project and just cannot put it down and when it is done I am lost until(which is never long)I start a new project. This is the time I read and sleep. Yes, that is right, when I am in the middle of a project, sleep and all diversions are cut off until it is done....true compulsive behavior. As usual today I was reading Helen Lowrie Marshall and this is what I came across and it seemed something that really needed to be passed on tonight.
You never know when someone
May catch a dream from you.
You never know when a little word
Or something you may do
May open up the windows
of a mind that seeks the light....
The way you live may not matter at all,
But you never know...it might.
And just in case it could be
That another's life through you,
Might possibly change for the better
With a broader and brighter view,
It seems it might be worth a try
At pointing a way to the right....
Of course, it may not matter at all,
But then again it might! Helen L Marshall
Now you see how my life goes and I have full well learned to adjust. I pour all I have in till I am almost exhausted BUT that seems to completely clear the brain so the new thoughts come rushing in like fresh linen flapping in the wind on a very sunny day. This way of living is the only way I can survive. I can not tell you how invigorating this is to me.....silly. huh?
Well I can't tell you what my next project will be. I'm thinking about "A Family Day in The Park For Health" still in the thought stage.....but as for now I think I will go to bed and dream of new adventures to be had in "PD'ville" love Pokie

Monday, June 14, 2010

Old Soldiers

"Old Soldiers never Die" and my Dad use to say, "Everything around here just about works" and we use to turn our heads and mumble. Lately this is a daily chant in my world. I have so many things I would like to do and either physically or mentally cannot complete them. And then the interruptions. It's summer and my house is like Grand Central Station and everyone has a comment that they think I need to answer....alas there goes my train of thought and I have to start all over again...But there is a bright side to this. My lap top went down three days ago and I thought it was the end of the world but it was only the end of VISTA and back to GOOD 'OL XP. The power went off last night for four hours but when my printer came on it has never printed better. Maybe everything just needed a good cleaning out or vacation. I hope people think twice before they put me on the shelf for a newer model. I hope they make sure every drop of wisdom I could possibly pass on to my grandkids has been drained out and saved in a time capsule for later cross referencing. I hope they take a month or so and plunder through my writings and laugh or cry as they go. I so hope my life has not been in vain and that I made my family and my maker proud....love Pokie

Wednesday, June 9, 2010

Just a Short Thought on the Gulf

A sweet little gal who lives in the South and whom I meet up with every year at the Unity Walk sent me a note yesterday and I know where she is coming from. She goes by Staying Strong and that is what she is trying to do as her life as she knows it crumbles. Her quote was:
"So where are all the "Save the Gulf" concerts? Where are the T.V. benefits with celebrities and musicians giving speeches on the poor fisherman, wildlife, beaches and sabotaged gulf economy?"I am wondering the same thing. Why are we so quick to help other countries and not or own. Is there not enough glory in working for the underprivileged, or homeless. We are faced with the loss of the very beginning of our food chain. The thing is the loss is there. The wet lands are gone.

Second when a hurricane decides to come in to the Gulf this year, have you thought anything about what hurricanes do besides tear up property.......they suck up water and deposit it somewhere else. OILY WATER.....

How many years did it take God to grow that Lauger Turtle that is trying to get to her home beach to lay the next generation of eggs? If she makes it through the oil, are the eggs contaminated and then where does she go...to a certain death. All for the almighty dollar. Pokie

Tuesday, June 8, 2010

Bringing the patient voice into research

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Sunday, June 6, 2010

Special Moments for Old Hippies

How many ways can I thank you for the wonderful weekend you have presented me. I am so lucky to live in the St.Louis viewing area for PBS and have grown up, as have most all in this area, taking PBS for granted, just knowing it was the place to go everyday. This weekend I continually listened to your, or our, musical walk through life. The Canadian Tenors, the Straight Shooters, and glorious James Taylor and Carol King. I have laughed and cried and just simply let my mind wander to places it had not visited in forty years, at least. How did you know this was the weekend I needed this? I quess a true friend always knows those things. I have advanced Parkinson's Disease and fight it hard every day while I push myself to just keep moving. You took me to places I had forgotten and the date I shared with you was excellent to say the least. Please keep up the good work......you are right on track! love always Pokie

Thursday, June 3, 2010

Mixed Signals

I wish I could understand the message that is being sent to me today or maybe there is no message and my wires are just shorting out somewhere in time. I am working on the last panel for PLM's Parkinson's Quilt Project(number 16). The title is "Thanks" and my idea was to list the different organizations and companies who help PD patients survive in some sort of colorful way and this is how it went. I ran out of transfer paper because all the lettering kept coming out backwards so I decided to copy the different logos by going to each web site or cutting up my pamphlets and using them. Then I was faced with how to make them stick to material and be waterproof......As Oprah would say, I had a "A..Ha..Moment". The old reliable ziplock bags. I cut out each logo and put them in a ziplock bag, folded to the back to make it viewable and then taped it shut with scotch tape on the back then stitched each square onto the back panel with a whip stitch on my machine. And speaking of machines......Mine has decided to use it's own mind. When it thinks my ideas are TOO crazy it stops, breaks thread or WILL NOT BE THREADED. All of the above situations just really get my PD wound tight early in the morning or very late at night. Well I have vented a little and I will go back and get this DONE!!!!!!

Well it is now 12:45A.M. and I just took a picture of my new creation. I have been working on this solid for two days....I wish I had just one dollar for every time I threaded my sewing machine or filled a new bobbin. I can just keep on deaming because I am very sure there is no money coming my way....I wish I had some ice cream I would celebrate but nope. So I think I'll setttle for hot chocolate and put myuself to bed. Tomorrow is another day...love Pokie

Tuesday, June 1, 2010

In Explanation of MY Panels for PDF

I happen to think last night that with all the articles I have written for the other panels and walks and teams I have not wrote a thing explaining my panels and their beginnings and endings. The first was the "Christmas in Parkinsonville" which started much, much simpler and smaller in January when I was very much snowed in on top of a very steep hill with no hope of getting out for a month or so. As cabin fever crept in, I decided on my panel theme and started tearing an old vest apart for material. At this point it was hanging on the wall in my study an I would pin things to the material as I found something that interested me BUT soon I began getting up in the middle of the night and gluing and stitching. I knew I was exibiting true excessive compulsive behavior but since the panel was to be about me I let it run rampant. Next things began appearing on top of other things. Something would fall off and I would have to hand stitch it on again.....Colors clashed and appeared non perfect. Stitches changed from night to day in size and beauty but when it was finally done and in all of it's imperfection I realized I had really grasped the idea of Parkinson's Disease at Christmas or any other time of the year....an adult mind allowing the child mind inside to come out and play for a day and then at night the adult and child minds to be able to settle down and smile at the resulting accomplishments. This was my first square in January......

Then I stopped all sewing in preparation for the 2010 Parkinson Unity Walk in New York City. In my life nothing ranks higher and all focus heads there most of the year. As our team developed and contributions came in my enthusiasm just usually goes of the charts and leaves room for nothing else in my life. With Team Patientslikeme reaching $14,000.00 Dollars for research and the trip of a lifetime lived, I was back home to sew and realized I was several panels short of 16 for a full quilt.......so you know me. I shut down everything else and sewed for almost a month.

From that sewing came "To All PD Heroes Who Have Fallen", "A Walk in the Park for Parkinson's Disease" "One on One"and the one I am working on to finish now "Thanks" and I loved every minute of it.

Several people along the way sent me belongings or pictures and I made squares for them, V Wig and Peter and next Saturday they will leave my care for New York and the world. It will be much like sending your children off to college for me and leaves me to wonder what next, Who Knows love ya Pokie

Today With PokieToo and Parkinson's and Acute RA Disease