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Pokie's Journey to 2009
Friday November 6, 2009
Posted by: pokie too at 5:33AM CST on November 6, 2009
Yesterday was a day of miracles. Maybe small little steps to some but huge strides for me. Early on in the day a friend of mine sent me an article or news release . http://www.btang.net/, in which a group of doctors at Ohio State (yeh Midwest) had come across possibly a cure for Parkinson's. Not something to slow the progression but to Cure the disease. They have been researching an enyzme in the brain that kills brain cells and they have figured how to stop it. Small things to some if you do not have this disease but huge to those who have it.
I went from my email to Facebook and low and behold someone had ask me to be their friend. Not just someone but someone who for three years I have idolized as someone who could and does make a big difference in the progression of research of Parkinson's and ALS. Jamie Heywood had ask me ....Me a nobody from Mid Illinois to be his friend on Facebook. Who is Jamie? He owns and started Patientslikme.com after the loss of his brother to ALS at a very young age. Patientslikeme.com has given me a home for three years. A Home away from home while I adjusted to the facts of Parkinson's. I have posted in their PD forum religiously for three years. I have made hundreds of friends I would have never known and had experiences I would never had had. Jamie was "the ruler"and now he wanted to be my friend......Wow!!! I hurried up and answered "Yes" and tried to breath. Wow.
Two days before I had received blood work that for the first time in a year was NORMAL and now I was walking much better. Something was working and working well.
I was really clicking and the emails were flying and then the phone rang and it was the National Parkinson's Disease Foundation wanting more information on someone who was very special to me She had designed a tee shirt for me for the Walk. Would she like to enter a competition for them? Yes I think she would......
Quite unusually for me, I was handling this on a great eight hours sleep and felt great. I really don't know what is going on but I am loving it so keep it coming.....love Pokie
Thursday October 29, 2009
Posted by: pokie too at 5:01PM CST on October 29, 2009
I It's a super rainy day in my part of the world and this is my mom's worst days yet she ventured into the kitchen today and washed the dishes. Since my seizure on the 7th, I have something called Diphonesdia or the old time dropsy. I jerk and drop everything. The doctor told my mom on her last visit to read and discuss everything with me and it would help stimulate her brain. I have Parkinson's and Epilepsy and she has Alzheimers in the early stages. She was the one that found me after my seizure and she is suffering from something much more than anxiety. Fear is the word. She sees me shake lay on the couch and fears the nursing home.....not for me for her...or maybe both of us. This is the hardest stage in life for the family and the patients. The stepping down from an authority figure is hard enough without being a patient too and no one has any time left for you at the end of the day. After the semi caregiver picks up her son from church and a couple of gallons of milk from the grocery, drops her son off at home and checks on her teenage daughter, picks up supper through a fast through and checks on us, She has worked a eight hour day plus another five hours and it's nine o'clock. When does she have time for special hugs for anyone including herself and when the alarm clock goes off at five thirty how can she keep from saying, "Why Me?" I don't want to be a burden and neither does my mom and yet you have to feel like you are and pray for better health to come in and save you and them. The Parkinson's Disease Foundation http://www.pdhf.org has a seminar on caregiving in honor of National Caregiving Month on November 17th. You can join a one hour PD Expert briefing by Barbara Haberman, PHD, RN of Indiana, Indiana University
Tuesday October 27, 2009
Posted by: pokie too at 12:28AM CST on October 27, 2009
For three years I have been actively fighting a disease that never gives up....Parkinson's Disease. Often people think, as do many doctors, medicate and keep them quiet and quiet they become. I was so lucky in 2006 to come across not only an excellent Neurologist but a website that gave me more than five minutes for treatment. Do you understand what I mean? When you walk into a doctors office and the stop watch starts ticking at the desk. Heaven forbid you bring in your own charts of the diseases progression on a daily bases. Should you not be allowed to discuss any new meds you have heard of and if you might try them? Is it possible that you may have researched during the,"I'll see you in three months" period and hit on something that will help you? You and I and the doctor know that Parkinson's is incurable but it can also move to or be misdiagnosed as MSA, ALS, MS and Lymes Disease. On a good day, you might not know I have anything but on a bad day ALS does not look too far away. My progression right now is rapid and I have even went into seizures. One may say'"Oh, well." and duck your head and hibernate waiting for the inevitable.....Why! Where I use to be able to type all night, two hours at a time is now great, yet I still write three blogs and post on Patientslikeme.com, and keep up with Facebook and take care of my 84 year old mom who has Alzheimers. No I am not superwoman. I care. I also believe that if we try hard enough we can make a differnce in not only our lives but the lives of the people around us, whether we have a termanal illness or not....love pokie
Monday October 19, 2009
Posted by: pokie too at 11:06PM CST on October 19, 2009
Last week I had a seizure, but I will not give up. That two hours in time may have forced me to drastically slow down, change doctors because I cannot drive, get confused on the laptop because my right hand now vibrates as much as my left one does,,,,,this sends me to unknown pages and lines. I completely lost my cursor and had to turn the computer off this morning. I have given this serious thought and can not give up three years work. Awareness is needed to conquer this disease and I was just making some headway. Maybe I pushed too hard. Is there a too hard?.....
There are two things I would like to mention tonight:
1.....I would like for you to read my other two blogs and let me know what you think. " Coffee" is for fun and "Today With Pokie" is from my heart. I have been nominated for HealthBlogger iof the Year 2009 on Wellsphere through Stanford. The voting continues through December 15th. All you have to do isclick on the vote badge and enter. You can only vote once...http://justmeantiques.blogspot.com and http://justpokietoo.blogspot.com
2,,,,,October 23rd and 24th.
Paul N.Gade, JD.Allsup Inc.
If your confused about medicare, your not alone. Learn how you can become an educated Medicare consumer by understanding basic information about the medicare program, how it works, what your choices are and some insight into how it might change in the coming years.
Register now free Live webcast from Dallas, Texas http://bit.ly/PD-yopc
Bear with me as I stumble through this...love Pokie
Thursday October 15, 2009
Posted by: pokie too at 4:21AM CST on October 15, 2009
As a complete surprise to me, I have been nominated for Health Blogger of the Year 2009 on Wellsphere.com. And another surprise is last night I was running eighth in the top one hundred. Thank you so much my followers and friends. To vote for me you must go to my blog http://justmeantiques.blogspot.com and enter a vote on the badge. Thank you so much once again for your support and friendship....love pokie
Monday October 5, 2009
Posted by: pokie too at 4:22AM CST on October 5, 2009
Several months ago I had some blood work done at one of he local hospitals. I had my eight year old granddaughter and eighty three year old mom, with me. Add to the event that I was in a wheelchair with a leg brace on and see what happens. We were traveling up the sidewalk and passed my doctor of thirty years who started laughing. I turned to him and said' "What's so funny?" to which he replied, "I was just trying to figure out the designated driver." I went for days and could not get this out of my mind.and realized that in this family there is no designated driver. When I can no longer handle this there is no one to step in....so yesterday I started moving from my happy home I had made for myself in the basement. The move envoled eight stairs, a landing and seven more stairs. This is a marvelous invention of the sixties that does not work for me fifty years later. It should be interesting in a couple of years to see who is taking care of whom.
Sometimes I have to slack of my meds to gain some perspective as to where my disease actually is. It seems it is always time for a pill or a nap and there's no time left for play. Tomorrow is ever present today. If I am not thinking," I'll put it off till tomorrow", I'm thinking, "Gosh, I better get it done today because who will do it tomorrow?" "In all this confusion I have found an answer to the original question, if I have not lost you by now.......I;ll just hand the keys to My Lord and take it a slow step at a time...love Pokie
Posted by: pokie too at 3:48AM CST on October 5, 2009
The things that are going on in my life today seem so much more important than the fact that I have Parkinson's Disease. I'm ever so aware that time speeds on and waits for no one, be he fast or slow. I somehow an able to get by on so little sleep but I can not shake the idea " I don't want to say I didn't try to get everything done." though I know that this is not possible for most and particularly not me. As I travel this very strange road, God has seen fit to leave in every nook and cranny a rose or some special thing to catch my eye and spur me on.
One of these things fell into my life last week. Even I with Rem's Disorder would never have dreamed or saw this coming. I was called and ask to have my blog viewed at the Health 2.0 Conference in San Francisco this week. Not in one place but two large screens with computer hook up for questions and answers. This is the largest Health Fair in the United States and maybe world wide . Next year it will be in Paris, France. If that was not enough , my blog will be in the running for Health Blogger of the Year on http:wellsphere.com. I hope you might take time to read my blog in the near future at http://justmeantiques.blogspot.com (Today With Pokie Too and Parkinson's). I also write Coffee With Pokie at http://justpokietoo.com. Thoughts and prayers would be greatly appreciated.......love pokie
As usual I turned to not only God but Helen Lowrie Marshall to give me a push:
CAMEOS OF MEMORY
These are my treasures kept apart.
Cradled in velvet in my heart,
Graven profiles, picture...clear,
Perfect moments, priceless...dear,
Etched in ageless time to be
My cameos of memory.
These are my wealth, my warmth, my light,
I keep them dream close all the night.
With finger tips of heart, and mind
I trace each profile there defined...
These treasures none can take from me...
My cameos of memory.
Helen Lowrie Marshal
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About This Blog
A description of my journey to the 2009 Parkinson's Unity Walk in 2009, including interesting stories and bio's on our team members, our thoughts on our goals and dreams as we work toward our goal. We will be and currently are Team Patientslikeme.com. Our home is this website where we post daily. Our goal is to raise at least $25,000.00 this year for the cure.
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• Jessus, prayer, pain
• Christmas, rebirth • hope • support • caring • washington U • Parkinson's • PAN FORUM-2 • pokie too • Fayette Co, Ill • pokie too-3 • brother
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