Monday, May 31, 2010

Memorial Day from the Sidelines Today With PokieToo and Parkinson's Disease - Formatting Settings

I don't believe, if I had planned it, I could have had a better Memorial Day weekend and it is not over yet. As you know I am blessed with three children and five grandchildren and the farm has been the place to be this weekend. As time goes on and my place becomes more secure on the sidelines I can observe the formation of new patterns to be followed in my passing. Patterns I planned and dreamed of years before. I always wanted my ground to be a haven for my family at all times, a quiet sanctuary for all ages, where one could sit and listen to the sounds of nature and become relaxed and carefree. I wanted small children to learn the amazement of frolicking squirrels, jumping from tree to tree and cutting their tails back and forth over their heads. I wanted them to be amazed when they filled the bird feeder and watched the squirrel jump ten feet, with so much precision, and reach his goal every time.
Well those dreams and more came true this weekend while I watch from a very special seat at our lake in the back forty. My grandson, Brendan, hatched two geese out in an incubator and has been taking them to the lake with him daily to teach them how to to swim. Now you and I know that it is an inherited trait for geese to know how to swim at birth but it is only too cute to watch them come out of their pen and follow Brendan down the path to the pond where he gets in and they follow. They all swim around all day and in the evening they follow him back to the barn and get in their pen......Then on the other side of the fence we have "Quack" their mom who has no idea she is a duck, nor does she know she can fly and really has no desire to. Brendan turns her out of the pen and she follows him to the pond too but goes to the other side and does her thing. She stays as long as she likes and walks back to the pen on her own...whenever. She waits on the porch of the pen till someone comes along and lets her in.....
Since I spend all my nights in a recliner next to the front window, the girls put a huge bird feeder outside this window to watch the early morning traffic and now the squirrels not only have bird competition but I have a mother quail and four babies feeding on what the squirrel would be wasting. Many of my hours are spent in front of this window sewing and watching and communing with nature and God.
I have so many thoughts for today but to keep it short I must say, how blessed I am to have what I have and how saddened I am by the oil spill. This will never be righted. These people have lost all......there heritage, their peace and solitude.....please pray for a solution where I see no solution can be made. It seems daily I am confronted with all these things that sadden me greatly and I can find nothing to do about them....but I have not given up hope. I donated my car to the Salvation Army the other day, and donations to everything is made constantly and soon clothing will hit the road for several destinations.......As long as my mind keep working and the dreams keep coming I will keep finding solutions to some of the little problems that are out there. Maybe the sidelines are good . Could you take a box today and fill it for Good Will or Charity, just one box? It will make you feel needed. It will make you part of the fix instead of part of the problem. Think about it from the sidelines.......and by the way did you see "Big Albert" hit THREE home runs in the Cardinal/Cubs game yesterday? Happy Memorial Day to me Love ya Pokie

Sunday, May 30, 2010


Surely it has not been that long since I have made an entry on this blog. Did I not tell you that our team came in thirteenth in the Parkinson Unity Walk in New York city with almost $14,000.00 dollars our little team collected in four months. We will do even better next year since we are already starting our efforts and thoughts for next year.

I had just a few family matters to handle when I came back and I had the Parkinson Unity Quilt for PDF to finish. I have sewn 2 foot panels non stop for almost a month and can say I am now done. Sixteen ready to ship after the last pictures and boxing today. I just had to stop everything and devote all my brain to this project to succeed. I not only had to sew but come up with ideas and make them permanent for two years of travel, thus a lot of hand sewing. This was nothing like I have ever been involved with but I thoroughly enjoyed every second.

I hope to be much more reliable with my posting because I have some things I have been contacted about I would like to pass on in the near future.....Bear with me, while I get a little second or third ya pokie

Tuesday, May 11, 2010

Around the World in Purple Today With Though Purple day has come and gone I quess you know it will never be far from my heart. after last October seventh when once again I went down with a grand mal seizure which landed me in the hospital for a week and more tests and more medication. I had suffered two seizures in 1996 and actually died but had no more and assumed they had diagnosed me wrong....Wrong!!!!! As time goes on this year I hope to become more and more involved in the community and be able to figure out the many different kinds of seizures and their effects on the body and pass them on to you. I can tell you that has open a new Epilepsy site that is thriving and I am a new member about to become a PRO 3 status which I am very proud of. That means I have filled and kept my profile and records up to date for a given length of time. The information I have already learned there is huge....more later love Pokie

Sunday, May 9, 2010

CHRONIC PAIN Today With PokieToo and Parkinson's Disease - Formatting Settings

Wesser Pain Management Clinic at Mt. Sinai Hospital in Toronto, Canada is running a study on the links between pain and day to day social and psychological events in people with chronic pain. The study involves an initial two hours spent viewing a video and filling out forms and then you are on your way. For three weeks, three times a day, breakfast lunch and supper, you log in your mood and pain which should take you a matter of minutes. At the end of the study, you receive a detailed copy of reports and graphs for participating. If interested contact http://www.mountsinai.on,ca
Their address is:
Mount Sinia Hospital
Joseph and Wolph Lebovic Health Complex
600 University Ave.
Toronto, Canada MSG 1x5t

Saturday, May 8, 2010

"Judy 07" Today With PokieToo and Parkinson's Disease - Formatting Settings

I have so many things to remember this quiet spoken little lady for. First there were teapots. That's right. I believe she collects teapots and the fist quilt experience with her she did a teapot on a blue background.....just beautiful. When I posted to start this project, Judy was the first to respond, "Pokie, I am making a square."This is what she attached to it when she sent it:

"My panel is a tribute to my faith, family and friends who have accompanied me through my life's journey of joy and sorrows, grief and anger, and now Parkinson's. Parkinson's is slowly stealing my strength, thoughts and words. However...My faith, family and friends will accompany me on this journey also. As they always have and always will. Turning despair into hope, anger into acceptance, and grief into a quiet joy.....I AM TRULY BLESSED"

I will never forget looking up and there was Judy at the Unity Walk this Year just glowing. Her daughters had givern her the trip to New York City and one had met her there to show her around....Parkinson's is not slowing her up on ya Pokie

"Mongoose 55" Today With PokieToo and Parkinson's Disease - Formatting Settings

I was just totally blown away when I opened this package. Embroidery is one thing and then there is embroidery. Every inch of this is stitched with words from friends. This is what she wrote me,
"When I decided to make a panel I came up with the theme, 'Parkinson's doesn't define me,' I was going to embroidery words on the panel that I would use to describe me, but I could only come up with about five, so I made the tulips and sent them to friends and family asking them to write a word to define me. I was expecting things like, short, freckled, Irish, something one word each.

Instead, people wrote longer and very nice things about me. It was very sweet and touching, but it really wasn't WORDS to define m. So I decided to change my theme to "See me, not my Symptoms" Once I did that, it seemed I had to explain the tulips which is why I wrote on the flowers my thoughts. I added the ladybugs because I love ladybugs and I wanted to add something personal but also my name Donna, means Lady and legion has it that ladybugs were named for the Blessed Mother and so was I......

Now just how beautiful is that? Love Pokie

Thursday, May 6, 2010

Lyme Awareness Month Today With PokieToo and Parkinson's Disease - Formatting Settings

Yes, right after National Parkinson's Awareness Month is National Lyme Awareness month and I have a very dear friend who fights this disease with all she has body and soul. We started our journey four years ago on where we had both just stated posting on the Parkinson's forum. At that time it was a small very close knit group. Now we have grown to over 5,000 but those original members are still very close as Karen and I are. In that four years she has went from a diagnoses of PARKINSON'S to MSA to LYMES. actually her first lyme test came back negitive but she persisted and changed testing companies and doctors and got her final diagnoses and did not miss a beat in her determination to make America aware of the crisis that is upon us in this country. I live in a very rural setting where I have been all my life and honestly cannot tell you how many times me and my family have been bitten. Here it seems to be a right of passage into adulthood. Twice a year the ticks come...Spring and Fall. They get on all of us. We check heads, back of knees and waist bands daily of all kids and ourselves. All animals get meds and dipped or dusted(both great for humans, kidding) and you go on to the next season. WRONG!
People are now finding that they have been diagnosed with Parkinson's and actually had Lymes all along. The symptoms are the same the treatment is not. The treatment is high, continued doses of antibiotics....and believe me if you have let it go for a while it is a life threating, very hard disease to fight. The epidemic is so huge and the treatment so controversal that often patients are treated in secret and today I learned this disturbing fact which preempted me to write this article. If a group ever needed a safe environment to connect and discuss their problems and solutions on the internet, it is the Lymes Community and their forum is wanting to charge them $600.00 a year to participate. TOTALLY OUTRAGEOUS......
There is a film called "Under My Skin" get it and listen to every bit of it. Igenic is the testing physicality and the blog you need to be following is Metamorphis of a Butterfly.
The bottom line is don't let anyone tell you that there are no ticks in your area. They are everywhere...rural and cities.....inside and out..yards and woods. If you get a bite go to the doctor immediately and if the tick is removed take it along for testing. It's better to be safe than sorry and what they don't tell you is it is an extremely expensive disease to treat and can be Pokie

Wednesday, May 5, 2010

Sara-Elizabeth Clark....Four Stars for Epilepsy

Sara-El Today With PokieToo and Parkinson's Disease - Formatting Settings

I would like to take this small chance to tell you about someone I consider a friend but I may never meet. Like so many I come across in this battle against Neurological Disorders, they fight their battle and so few hear their story as they do so much for their cause. Sara is just that kind of person. At 16 months of age Sara began to have Idiopathic Benign Childhood Seizures. She is now fourteen and medication and seizure free. With most teens this would set them free to leave EP far behind, but not Sara. She writes a monthly newsletter about Epilepsy and it's happenings. She has a web site and she just finished her first book by the same name. Ok, take a deep breath, this year for the fourth year she will host a Run Walk Event on June 6th at The State University of New York at New Paltz (SUNY). In the past three years Sara has collected 50,000.00 dollars for Epilepsy Research and I would like to invite anyone in the area to participate or if you just want to donate , visit her site or contact the Epilepsy Foundation of Northwestern New York. Sara, it is my pleasure to share your illness and hope some of your enthusiasm finds it's way into my body also....keep up the good work' love ya Pokie

My Friend, Patty...... Today With PokieToo and Parkinson's Disease - Formatting Settings

Let me tell you the story of Patty from Concepcion, Chili. On Facebook one night I noticed a group of Parkinson's patients from Chili and invited them to chat. We talked that night and the next night the earthquake hit. I panicked and sent email and messages everywhere trying to find her and then finally she answered me with, "I am Fine." She has skype as do I and we would contact each other and laugh at our inability to communicate. Then her son came in and he studies at the university and could translate for her. I sent her a package right away of which she got a big laugh. I sent three packs, of Hershey kisses, two boxes of Velvetta Mac and Cheese, makeup, a calendar and Parkinson's books in English......It rattled all the way to Chili. She had found that I was collecting panels for the PDF Quilt Project and started making a panel for me. This is it,the brown one on a white background to the side,(I had trouble uploading) and how proud of it I am. Our friendship grows daily as we slowly learn each others language and while I was in New York I found a source for her to receive Parkinson's books for her and her group in her native language through the Parkinson's Disease Foundation. We both have Parkinson's but we both laugh and we love. She has three children and over a hundred in her support group. I am so lucky to have met her and value her friendship probably more than she knows. Patty, when you read this as I know you will, I send my love and "Gracias mi amigo" Love Pokie

Tuesday, May 4, 2010

Number 2057 Today With PokieToo and Parkinson's Disease - Formatting Settings

I rose above the ruble I call my desk and retreated to my own personal paradise,yesterday. And in doing so reafirmed that I can organize a project, fix a slightly off project and love every minute of it even though my hand would take spells and shake and and back would take spells and I would have to lay down. The project I was working on was a panel for the PARKINSON QUILT PROJECT for the Global Conference in Scotland. I am the initial receiver of those for I patch and size, where needed and when I have 16 panels , send them on to make a quilt in our honor. Yesterday I was working on panel #2057 "Goodpenny" from La Honda, California. I have known this little gal for over four year from the site. She use to go by UK Lady. I thought that meant she was from the UK but it meant she played the uk...... My granddaughter, who was then four, use to set on my lap and watch when I was on the internet. and when her picture would come up she would call her the pretty lady. Two years ago I traveled to California to meet her and her husband Bob and last year they met me at the Unity Walk, and thus you see the strength of our friendship. She fifty, me Sixty three but both with PD and making quilt panels, with love, for the Parkinson Disease Foundation to show some of our journey with Parkinson Disease, be it good or bad. When I think of Marian, I think of Yellows and bright, vibrant colors and when I got her square that was just what I got. She makes jewelry and designs cloths, she carves and paints and she writes and most important to me......she writes beautiful poetry and now she makes quilt panels.
So many have wondered about my fasination with this project and I can only tell you it was inherited. My grandmother and mother have always sewn and passed their beliefs on to me about quilts. They have never been just material sewn randomly together to cover a space. They have been a story from the soul that needed to be pasted on to the next owner. Marian's story is this

Still strumming, still humming,
Still singing my songs,
Creating and dancing,
and getting along....

These are my
Silver linings, you see,
And nothing can
stop me,
Not even PD.

This is what this project is about and when the World sees it completed will awe. Patients with Parkinson's Disease productive and living with PD. Thank you my friend, Marian, Love Pokie

Saturday, May 1, 2010

Out on a Limb Today With PokieToo and Parkinson's Disease - Formatting Settings

On occassion these thoughts get stuck as they travel through my brain. They are not always productive thoughts and some never make it to first base but this one keeps coming back and I am thinking there must be something to it. When a patient is diagnosed with Parkinson's Disease, the first step is sinemet and an agonist to judge the severity and how it can be handled. As years go on and medicines are changed and doses are upped and downed, almost every patient goes through sabbaticals. A sabbatical, to me, is not taking my meds for a day or so, not telling any one, and feeling like I have really pulled something off.....I do not suggest this. Another thing we all fight is the lack of motivation or speed. This is usually judged as depression and treated with anti depressant.....why not some sort of stimulant? Some brains respond well to diet stimulants and some don't but at least they get you up and moving and alert. Caffenine is a no no for me in large doses, but something to keep you going when your " PD brain" is telling you not to, seems to be in order for those who are not depressed. Baby-Boomers are goers and doers....and when PD takes this away from us THEN comes the depression. My mixed up idea is that this disease starts and ends with our ability to over come the brain telling us to stop. To me, it is like fighting the devil in every corner. Fragmented thoughts that I try to organize.; a house I try to keep clean that doesn't want to be clean; a mother who needs to be older than me at 86 but walks like she's 36; Places I want to go see and feel I am running out of time. All of these things, I might survive and conquer more readily were it for a stimulant instead of antidepressants and downers......Oh, well......This is pretty heavy thinking for a Saturday morning an now that it is out there, I feel better. Treat the thoughts and needs not the symptoms...Does that make sense? We have survived tornadoes and severve storms in Illinois last night and semi sunshine is peaking at me through the window. I think I'll get another cup of coffee(aka, stimulant) and go sit on the back porch for a ya Pokie

Today With PokieToo and Parkinson's and Acute RA Disease