Saturday, November 29, 2008

Today I Wish You a Day of Ordinary Miracles
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

This morning as I am getting ready for the onslaught of family to the farm for the day, I was remembering days of past holidays and this too will be one to remember for this will be the Holiday I relinquish power of the family. I have always been the core of our family and now it's time to pass that on to the next generation which would be my son and two daughters. I can no longer make the turkey and sometimes two or cook for thirty and still work a full time job from 11 to 7 five days a week. I always did huge amounts of shopping and baking. Several years I baked and gave away ......98 DOZEN OF COOKIES FOR CHRISTMAS. I have always put my Christmas tree up the first of November and taken it down the last day of January and every room had Christmas Decorations including the bathrooms. It's funny how life evolves and changes over the years.....

There have been several times when I thought God just threw something in to make me slow up and pay attention. Illnesses and Deaths usually have that effect on me. Parkinson's has done all of this and more and ye ordinary miracles bless my every day. Somethings come to mind from an email from 2002 (yes that's right) that I saved and here it is....

A fresh pot of coffee yo didn't make yourself.
An unexpected phone call from an old friend.
Green stoplights on your way to shop.
A good sing along song on the radio.
Your keys right were you looked the first time.
I wish you a day of happiness and perfection-little bite size
pieces of perfection that give you the funny feeling that the Lord is
smiling at you, holding you so gently because you are someone special
and rare.
I wish you a day of Peace, Happiness and Joy.
They say it takes a minute to find a special person, an hour to appreciate the, a day to love them, but an entire life to forget them. Donald F. Boice

My life has been so blessed and today while in the act of giving up and passing on, I remember friends and lovers who have passed on, who gave me such pleasure and memories. One in particular I remember today. For some twenty years we loved like no other and then came cancer and last year at this time he was gone. Just as fast as he had smiled at me and I loved him and he loved me.... he was gone. No I'm not bitter and no I'm not sad. Every minute we were together was intense and meaningful. Thank you Lord for the experience.

In all the rush and scurrying around that surrounds life these days I hope as I pass on the holiday ornaments and traditions to the next generation, I hope they receive the ability to feel passionately about another human being or project and have the will to follow that passion through good and bad. I would wish that they can pray and talk to my Lord and recognize his blessing when it is passed on. Take the Time always to feel the passion and ordinary miracles of life......Happy Holidays Always pokie

Sunday, November 16, 2008

Traveling for a Cure
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Several things have happened to me in the past month, things that never would have happened before being diagnosed with Parkinson's Disease. I launched a support group at the Fayette County hospital, in Vandalia, Illinois. It's not just for Parkinson's Disease but caregivers and anyone that would just like to talk and get information about neurological disorders. The first meeting was a month ago tomorrow and so I will venture back with my mind a buzz with places I have been and things I have learned.

One of the great people I met was David Zid from Columbus, Ohio. Oh , now if you ever get the chance to meet this man please go. David graduated from the University of Ohio and is a personal trainer and president of Columbus Health Works and co author of Delay the Disease. He was soon drawn into Parkinson's Disease through a newly diagnosed friend and from there he saves the world. If David didn't do anything but smile he would win the world over but he has devised a very simple no stress exercise program that you can do sitting down or with a chair. His program is Exercise and Parkinson's Disease and his Book is Delay the Disease, and it works on the idea that if muscles are not moved they will freeze and not be able to move. DAVID THINKS BIG. Big movements that start in small ways and over time the movement comes back. When you see his presentation he comes down off the stage and goes through the crowd and you can tell how much he loves what he does. He's not above lying on the floor or giving you a hug or just stopping the show and talking to you. He really cares!

I had met his dad in Atlanta, Georgia at the Young Onset Parkinson's Conference in August and was so surprised to see him again at Indianapolis, Indiana and realized that he was David's father. I was there for the Parkinson's Awareness Assn. of Central Indiana, Inc. attending their symposium and David's dad recognized me first and then it was on....What a wonderful family and the things they are doing for Parkinson's Disease are astronomical...

The next person I met that day was a tiny little gal making a difference....Kristy Follmar Executive Director of Rock Steady Boxing and a certified personal trainer. she began her career as an Indiana Golden gloves Women's Champ(1999, 2000) and first ever Women's Indiana State Champion and NABC Featherweight and Super Featherwight Champion (2002,2003) With this list of credentials, she is the sweetest, most down to earth little gal I have ever met. She takes people in their sixties, seventies and eighties and teaches them to box and love it. She brought with her two examples, a woman in her sixties and a gentleman in his late seventies and you should have seen them hit her glove as she yelled right, left, left right. They were the picture of self confidence and balance. These are two very important things to people with Parkinson's and two things that we usually have very little of.

As luck would have it, when I got to the Davis Phinney Victory Summit in Denver, Colorado, October 4th. Kristy and her personal trainer Bob Schaefer and I had a chance to really talk and exchange ideas on a cure and talk about some people with great idea within the Parkinson's Network, one being my friend Tom and the Loaner Closet for Needed Equipment.

As you can see I have found my passion through being faced with a debilitating disease. My daily trials are counterbalanced with possibilities for a cure and trough taking that passion to the street, awareness is raised. Parkinson's is no longer someone in the corner of the nursing home in a wheel chair sleeping. We are many strong fighting a disease that can strike you down in your teens and twenties as well as older. Will it take babies being diagnosed with this disease before we can find a cure?

Thursday, November 13, 2008

Parkinson's Clinic of the Ozarks
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

A little while back I got in touch with the Parkinson's Clinic of the Ozarks in Springfield, Missouri wanting to check out their facilities and get a full evaluation of my Parkinson's Disease. Immediately I knew I had made the right choice. They were ever so helpful over the phone and were in constant contact with me or my physicans until November 11, 2008 when I arrived at their front door. Every detail of my journey was made easy and I really appreciate their attention to me and my problems. They have a really nice hotel on the site where you can stay for close to nothing and a Ronald MacDonald House next door. Each building is a separate bracket of medicine...Parkinson's, Physical Therapy, Bone and Joint, Heart and and so on. I checked in at 7:15 and had their constant attention until around 5:00.
I had speech evaluation, occupational evaluation, movement disorder and evaluation, medication evaluation, past medical records gone through. Thn after lunch we went through psycological and cognitive evaluation and then came the biggy round table discussion with every one there that had evaluated me and the doctors. I ;earned so many things and believed i really made some friends. The Clinic falls under these names Ferrell-Duncan Clinic, National Parkinson Foundation. Cox Health. Thank you so much Medical Team it was a memorable experience and one I would recommend to one and all.

Sunday, November 9, 2008

Parkinson'sClinic of the Ozarks
Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I leave tomorrow for the Parkinson's Clinic of the Ozarks in Springfield, Missouri. After what seems like a year of fighting constant pain in my left arm and abnormal swelling from my elbow to shoulder, I am finally giving in and trying to find a solution. I really don't know why I waited so long. I guess this was a classic case of "putting off" and I probably gained nothing by doing this. Human beings are kind of silly about such things. They can take care of everyone else but themselves. So much of this disease is not knowing. Over time you almost just believe all pain is justified....It will be nice to have all the facilities in one spot and have all the tests run at one time. Some answers should become apparent by the end of the first day.

Now on another subject, I found this quote yesterday in my Bible and it so applies to my thought s for the new administration and my hope for our future as a free country. It is 1Timothy 2:1-4 "First of all, I urge that entreaties and prayers, petitions and thanksgivings, be made on behalf of all men, for kings and all who are in authority so that we may lead a tranquil and quiet life in godliness and dignity." This quote just strikes me as being so beautiful and calming. On a daily bases my Bible seems to lead me to just such a place in my life and I am ever so thankful that place exists.

Today With PokieToo and Parkinson's and Acute RA Disease