Milestones

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As we get older milestones take on a whole new meaning in our lives. Usually by sixty the milestones no longer exist. As for me you know I never do anything the easy way. Above is me crossing the finish line at this years Parkinson;s Unity Walk in Central Park, New York. I'm 61 , stage four Parkinsons and walked two miles for the cause. That walk was a huge milestone in my life. It seems now to make everything that has went before tiny in comparison. Nothing that I encounter now has any corrilation to my previous 60 years. Every minute seems to be full of new ideas and plans, new people to see and hug and always plans for the future. No day is taken for granted and neither is any person. I barely have time to sleep. Like I said this is the biggest milestone in my life but there are others happening around me also......

Patientslikeme.com is soon to roll over 2000 on the PD side. This is unbelievable since the site has more than doubled since March of this year. People from all over the world coming together to discuss their fears and problems with living with Parkinson disease. As their time on the site increases their bravery soars and they start sharing all their feelings good or bad. Some tare there for friendship and some are there for information. Some come for a good story line or just "nosing" and some are there to bring attention to themselves are a site or product. It ends up a very unique blend on the net......but it works mainly because we gravitate toward the importance of religion in our daily life with Parkinson Disease. I have watched the site I love so much grow and with it the possibilities for a cure and better life for those patients logged in and participating.i
Now comes milestone number three. I had no idea that someone would pay me to go to a conference for three days for Parkinson disease. Well hold on to your hats because I am on my way to Atlanta, Georgia August 7-9, 2008 for the Annual Young Onset Parkinson Conference with a scholarship for expenses and travel. Life just gets better and better. just so you will know, I do not multitask too well anymore so a lot of my thoughts will be centered on this trip and what I learn while I'm there. More soon.....Pokie

Thinking Up Instead Down

A SHAFT OF SUNLIGHT

A shaft of sunlight breaking through
Can make the whole world shining new;
Can shape tomorrow, change a life;
Can banish doubt and fear and strife.

One shaft of sunlight through the grey..
One word of cheer that we may say,
Could carry farflung consequence,
And might make the difference.

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Yesterday was a day that could have been a disaster as far as my ability to fight depression. Early in the morning I decided to leave my new grandson in the good care of his parents and return to my home to take care of my aging mother, I very seldom cry and yet I cried all the way home. I hated to leave him and the gentle feel of his little soft face against mine and return to the harse reality that waited for me. We had already formed a bond that needed no words to be spoken to make my heart soar to huge heights. Bless his heart in four days he had melted the ice that had formed in his grandma's heart.

As my day went on things continued to pile up and soon a im.passable wall was in front of me. Taking advantage of the fact I was 45 minutes away, my daughter decided to get rid of all the animals on my farm, including my nannie goat and her two kids. Mind you I have raised her since she was six weeks old. I still cringe when I think how lost she must be and she was such a good mom and a good friend. This one act removed me from farming and I totally lost my identity I was so proud of. I was a farmer. I'm sure the thought was it was safer and less expensive and easier on my health, but it threw me off the cliff and I've not been the same since.

I finally made it to the site and the first thing I read is very dark humor about PD and the last line just stuck to me like glue......something to the effect that sooner or later we would stop taking baths and the friends would stop coming by and that was ok with him.....I just snapped being Pokie on a soapbox and preaching out of turn! everyone has freedom of speech on a forum. But please do it with respect for the fact that you are talking to people who could very easily trip and not get up from depression on something you thought nothing of. well this too passed.

The next morning I received a call from California, Massachusetts,Ohio and another from California, all helping me to see that there was two possibilities here. I could continue thinking down and not only hurt myself but hurt the people who depend on me to make them laugh in some small way. Or I could turn the other cheek and be the person God sees when H e rests his eyes at the end of the day. The person who is following his wishes and doing his will.

I thought all day on this and decided I would just go get me a camper and travel since I have nothing to take care of anymore. I know they would have me committed if I tried this. So for now I will keep the faith and continue to write this blog and change for the better...thinking up instead of down.......pokie

A Night Full of Memories

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Over the past week I have tried to help my son and daughter in law with my new grandson who came into this world Saturday morning at 830 am. I am known to have a sense of humor but the family my son married into is a riot and my son is the funniest thing walking. The following are some remarks and funny things that have happened while Pokie was trying to be a grandmother yet again......

My son has always been able to mix words up and transpose them in the funniest ways but I believe he out did his self this time. My daughter in law is breast feeding and long before the baby came she was talking to her aunt about this process. Her aunt advised her to massage the nipples to increase milk production, which prompted my son to say,"You really need to keep those MILK DUDS producing."

His description of the birthingtable left a whole lot to the imagination, when he explained that the whole end fell off and there was a huge trash can there to use. And when questioned on the men being the ones to have the baby, he said they couldn't stand the pain.

Then there is the night before the birth. We got to the hospital about 2:30pm and the contractions were moving right along and then the delivery was put on hold so the doctor could go home which left the father of the bride and I searching for a place to catch some sleep and a nurse that was determined that there never be more than two people in the birth room at one time. So the terms of war had been laid out. Through out the night Leon and I continued our search for sleeping accomodation not realizing that our nurse from hell was watching our every move on camera. If I made it to the room she gave me just enough time to be motioned in and give mom a hug and here she came to run me out. The third time about 4 am I was beginning to show wear and tear and she came up behind me and said, "I said two and held two fingers in my face,"I said very politely(?), " excuse me but they are both sleeping and she called me in!" and she took me out.

You see I brought this on myself earlier in the evening when I had noticed they had a computer in the visiting room on WiFi and my first thought was, "Wow ,I can send it all back to the site first hand while I wait." This might have been a great idea except for the fact that the monitor did not work and after an hour of plugging and unplugging inlets and outlets, I went for a nurse to help. A very sweet lady appeared and off we went to the ICU waiting room where they had a monitor on BUT it was only getting the hospital channel. I thanked her very nicely and gave her a Patientslikeme business card and we talked a little about the site and parted ways. In hind site maybe I confused the nurses and they could have thought I was going to spy on them. Who knows but it made for a very interesting night.....

All in all though, God really took care of me quite well considering after no labor on my part and many memories to take with me and laugh about, I was presented with the most beautiful 9lb 2 oz. baby boy 21" long and a definite keeper in everyone's eyes . Thanks Lord, Pokie

The Coffee Shop.....

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Very early in the morning in cyberland, something so neat happens almost every day. People from all over the world congregate at one place for imaginary coffee and chat. This morning we had representation from Illinois, California, Colorado, Tennessee, and Wyoming and Spain. As the jokes were flying all of a sudden Nicole (browncat) started telling us what she had to do to start her day after recent DBS surgery. She didn't just say I push a button and I feel better. She said starting tremor and giving stimulus and then there was a pause while we waited for the next event to happen as her brain adjusted to a new stimulator she had just received and was learning to operate. How do I thank this little gal from Colorado for sharing this most intimate of experiences with us with such detail and strength? I really don't think that's possible. I can only say I got cold chills as she went through the thirty minute ritual.

It started with a post a couple of months ago saying. I have decided to have DBS surgery will you keep me in your prayers and thoughts and that we did. The very day of the surgery she managed to get out a few lines to us to let us know she was doing well and we started sending her cards, both by email or postal daily.....yes, we phone call each other also....someone is always in touch for support. With the help of Patientslikeme.com we try to be available for each other 24-7....in the belief that a kind word or a moment of prayer can sometimes take the pain away or at least divert the mind to another place to make the pain more tolerable.

During these discussions a bond is formed that helps each patient to feel easier about discussing symptoms that maybe have been forgotten or lost in the process. Sometimes only one of us or maybe two have the same symptom and sometimes it's hundreds. Those who have different symptoms from everyone else are very important because could represent a new turn in this disease or someone is having success with a new drug or they tried something on their own and it worked. The important thing is they are talking and getting it out. This is not a pretty disease and it's not forgiving. It's brutal in it's attack on us and if we try to fight it alone it is very depressing for us and our families. But with friends who know just exactly where we are coming from the day is easier and the soul is able to laugh, if for only an instant.....

The other day I posted a picture of a dead tree amongst a row of very healthy green trees. I pulled up to the bank drive through and looked up and there was this tree. I could not wait to take a picture. It seem to be saying something to me so loudly....."Look even in death I am stately and proud and I stand out. I am the ruler of my surroundings." If there is nothing I can leave behind I hope someone remembers this picture of this tree. It had it's own grace , it's own beauty for those who would care to look for it. Ok, Pokie what does this have to do with Nicole? Nicole has taken a very bad situation and turned it around. She takes each day and tries to make it better. She's never given up. And she has selflessly shared her experiences to us knowing we are faced with the question daily should I have surgery or not.

My hat is off to you Nicole and continue to purr.......your such an inspiration to all of us .....love POKIE

Time to Downsize.....

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Today I found that not only the corporate world but my world is feeling the pinch. The midwest will feel the force of this full blast. High gas prices will for ever change our world and once they (whoever "they" are) get that five dollar bill in their pockets, the prices will never come down again. It happened with sugar and it's happening with milk and eggs.

I am what is called a hobby farmer. I have a collection of pet animals on my very small farm that reward me with their wares if I feed them....I have chickens and goats and horses. But in all this I also have Parkinson's Disease and Acute Rheumatoid Arthritis, which though my very expensive meds feed it on a daily bases, I have yet to see a huge reward so as in the corporate world I have this question to answer: Whether to downsize or shutdown completely......

The first to go were my two rabbits to a neighbor. One was a mix between a wild and a domestic that I acquired somewhere along the way for my grandson. His buddy and eating partner was "Bugs" a big white rabbit we found happily wandering down the road in town one day. They have cohabitated for almost three years and yesterday a neighbor took them for safe keeping. The chickens will leave today leaving one duck to wander all alone in the pen. His name is "Quack" and for four or so years he has lived with the other animals and never let me come out the back door without a greeting of "hello." We could always take Quack down to the new pond and let him go but I'm sure the animals in the woods higher up the food chain than him would have him for lunch the first day.

Now we come to my goats, Sadie, Yopa and Pee Dee. I got Sadie eight years ago . She was one of four and they were six weeks old. I raised them like children and they always looked to me for protection and food and a hug at least once a day. They were God's original bushhog.... and there is nothing they won't climb and most underbrush is on their food regiment. They are a farmers delight if you can keep them contained. If this becomes a problem your flower beds are the first to go and following in close succession will be your small ornamental trees...You see if Sadie sees me working on something and really enjoying it in the yard, that's what she wants to do too....They are the closest thing I have ever raised to humans. I have spent many a frustrating moment yelling at her but I know when she looks me in the eye, she loves me and has from day one.

Well Sadie will be the last to go and my farm will no longer be a farm and with the evacuation the farm sounds will go too. No chickens crowing at first light. No rush when they hear the back door open. Also there will be no heat lambs in the winter and trecks through the snow to feed and water buckets to thaw. It's the end of a way of life for me and as always change brings pain and confusion.

These are the thoughts Parkinson's has brought to my mind today. As always I have fought a good fight and Parkinson's has won, Last year in January I broke my leg and suffered through the winter. I was lucky. I made it into the house for help and it was a fairly warm day. All of this seems quite mundane to the outsider but it is so important to my survival this winter. I have went many rounds with my enemy and often the score is enemy one Pokie none but with all the losses there are alot of wins and one is the friendships I have made along the way and another is my ability to pull out all the stops and go for it.and that is what I have done today with this blog. Pokie one Parkinson's none today.........thanks.

Strawberry Fields Forever.....

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What happens when one grows older? Why must all things become so hard? It seems after years of paying dues our fee would be more than paid and we would be entitled to a day of free rides. Where are those days and did I miss a turn in the rode while I was rushing along? All of a sudden the simpliest of things seem to be arming for battle with me. Vehicles that I should be able to finish my driving career with, sputter and misfire and threaten to quit. Appliances rattle and bang in defiance of the "we will run quietly" rule. Passersby get to close into my space and life just in general is really letting me down.

I've always been a farmer in my heart and looked forward to the change of seasons to spur me on to new achievements . No task was to huge and dreams danced day and night in my brain and begged for their fare share of time to be aired. Now tasks seem to come "super sized" and in ever greatening quantity. The lightest of things seem to weight tons and turtles move faster than me. I'm never caught up and always behind and seem to be in a rut.

I know if I looked really close I might be able to fine a small piece of a dream that was planted many years ago, but I wonder if I have the strength to nurish it and watch it grow. My hopes for peace on earth slip farther and farther away and most everything I believed in the sixties, just is not coming true,but....

When I saw the memorial to John Lennon in Central Park ,the old hippy in me was there once more and the fire was lit. I could "IMAGINE." I hope in what I will call the later stage of my life that this is never taken away from me and I can shut my eyes and see that medallion in the middle of a far away place and be able to imagine this world living without all of these neurological nightmares we have now. If I must become child like again before I die......I can only hope to be able to once again be a hippy in "Strawberry Fields Forever".......................POKIE

Here's to You Grampa.....

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There is nowhere to start when you are going to talk about my dad. The funny part is now seven years after his passing there is no ending either. Now more than ever this very strange man remains very much the head of our family. Something gets done on the farm like the lake we put in in the pasture this year and my son said, "Mom, grampa would be so proud," and I know that he is proud.

My dad was born in 1919 and grew up during the great depression in a log cabin north of Cape Girardeau, Missouri. They had a little farm. Just a back woods hillside that was never going to earn it's keep. They had a big old mutt dog named Teapot and one milk cow named Bessy and life was good considering the economy. He was one of three kids. Aunt Dorothy went on in life to become a very respected teacher in St. Louis. Her brother and my dad were very close and were always referred to as "buds." Probably co-hearts in crime would have been a better description. Though the family was so poor, education was always at the very top of the list and Uncle Jack and Aunt Dorothy had the I.Q. to make it and my dad was always a" wantabe." He made it through high school and went to work while his brother, enlisted in the service as a pilot only to crash right after receiving his wings. My dad or his mom and dad never got over that loss and my dad spent the rest of his life, and his mom and dads life, trying to be his brother, Jack.

I was always daddy's girl and though at several periods in his life we really clashed, I remained his little girl and he was proud....I can remember me saying to my brother in the later years of my dad's life, that if I turned out like him, do everyone a favor and just shoot me. Guess what in my "ol age" I have turned out to be just like him......We differ in to major fields. Both of these major quirks were brought on by the depression. The first was saving anything. Down to the plastic salad bowls from Wendys', or old wheel rims or bent fence posts. The second was saving money and did over time accumulate a small fortune around him....BUT in my family you don't inherit money you inherit the possibility to make money with a lot of work involved.

I have a plague on the wall that says"If all else fails......how would grampa have done it?" Well, he survived with some very strange ideas but he believed in God and family and the last week of his life at 82 he was still cutting trees down for fire wood and stacking it...He had Myacinia Gravis. If he was in the yard the old trusty metal lawn chair was never far behind. At trying times in his life he was known to write a poem or two and liked to hear stories and could tell quite a few real stories.

"Here's to you grampa " as you were called in later years. You didn't always do it right but you "Got-R-Done" and you enjoyed the farm you died on and I really did love you afterall.......POKIE

Friends

This picture means so much to me. I have had it on my computer for such a long time. I found it one day after posting on PLM I thought I needed to be adopted since I had no caregiver and my mother who is 83 has Alzheimers Within hours there was this post from Alberta, Canada, "Pokie I'll adopt you'" and that began my relationship with Kirby....No matter what I post she always comes back with sound advice and caring.....Both of which I need on a daily bases. How special life is to have these hidden treasures around every bend in the road No matter what happens she is there for me or anyone else. So often you will hear someone say, I wish I had been this smart when I was younger. Boy. I would have had the world on a string." The world needs those people that are smart early in life but it also needs people like me that reach old age and can look back and remember all the lack of wisdom I had and how much fun I had being ignorant....

Many times if it had not been for my friends I would not be here today. Once my friend Linda stopped by after church, for no reason but to check up on me. I'm sure she did not realize that God had sent her to me because that was the day I had my first seizures and I was home alone with my kids....She was my friend the angel on earth that took me to the hospital and eventually saved my life. That was in 1996 and now twelve years later we just got off the phone from just checking in on each other.

Often the world closes in and it's pace consumes us, and we cannot breath....we just want to sit and be very quiet and maybe it will go away. We all have those moments and when we do some hibernate a day , some a week , and some a life time...But in using that wisdom of my older years, I try to look back and remember all the good and let the bad go.....my life's too short to start being dumb again........love POKIE

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a letter to the registry....

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My story begins many years ago in the Midwestern part of the United States when quite abruptly on a Sunday Morning in 1996 I began the journey that to this day has found no end and has since become my life's work. I got up that morning quite innocently thinking of going to church with my two teenage children. My thought was to run to the grocery store and get some donuts instead of fixing breakfast. Little did I know that without warning confusion would set in and though I did not realize, I was lost. Two blocks from home....I was lost. I tried the donuts that were marked 2 for 49 cents and could not figure out how much money to give the clerk...With a twenty dollar bill in my hand I pretended all was well and took the change and headed for the door. I headed for home still not realizing what was going on and drove past my house three times before I remembered where I lived and pulled in the driveway only to get out leaving the donuts in the car and swearing someone must have stolen them. After much confusion, I laid on  the couch not realizing the looks on my children's faces as they watched their mother go into melt down.

That was the beginning of one of two grand-mal seizures that launched me into the world of Parkinson's Disease. Now twelve years later and with many symptoms passed I sit quite peacefully listening to American Indian music and writing to you of a life that has come full circle

I now blog daily about the encounters with life and my friends on Patientslikeme.com. It seems that daily God sends me in another direction for the cure. While at the walk I talked to May-May Ali at the Parkinson's. org booth and when we were parting I ask her to give her dad a hug for me and ask her to visit the site to see what we where doing and she ask who should she look for. My answer was, "POKIE"

A Minute to spend......

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A MINUTE TO SPEND

So you have only a minute to spend?
well, here's what a minute will buy
A word to let someone know you care,
A smile to a passerby,
A bit of communion with God and His world,
A "Thank you that's maybe long due,
A deep look inward to change your sights
And broaden your point of view.
If you have all of a minute to spend,
How very lucky you are!
For a minute will buy a whole heart's prayer,
And pay your way clean to a star!
H.L. Marshall

This morning I thank you Lord for letting me get up and and open this book to this poem...Today I will research this woman who wrote the poem that will launch my day....and if she is still with us I will write her and tell her how much she means to me...As always I let a book fall open and with that reading I start my day....Sometimes it's from the Bible and and other times it's from "A World That Sings" by Helen Lowrie Marshall. Sometimes it comes from very simple poems my grandfather left to the family Somehow with the beginning of each day, My Lord takes time from his busy schedule to lead me in the right direction for that day.....In my present state of mind, with brain cells mis-firing right and left, how I appreciate this extra effort he is giving to me here on earth.

So often now, and more so than ever the very simple things get pushed aside and it seems the first to go are hugs and smiles....Now if you receive either of these from a "Parkie" please feel special. Our arms ache and Our faces are sometimes frozen in a frown or blank stare but our heart 's are still glowing inside and the love is still there for all...The trend seems to be not to touch and for heavens sake don't let anyone into "Your Space." We are becoming very lonely people at our own making. I have found a very special exercise I do daily to keep me going .....I watch a child a work.....Very much from a far so they don't realize they are being watched....and truly see that brain work the way God wanted it to and never take that for granted again....The examples I have are my own grandchildren....but if you have, none go to a park or mall.....There is a whole world down there close to the ground that really has better perspective than we do.....

So......Today I will "Smell the Roses" and mentally send them to my friends....I will talk to myself as if they were walking beside me and life had no problems.....and I will glory in the fact that my Lord loves me with all he has. He brought me all the sensations of that rose to comfort me and I am blessed Thank-you POKIE

PD and RA get married......

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As luck would have it, nothing in my life is just cut and dried simple. For years I have went through seizures, varying forms of mobility or not, operations and multitudes of doctors and medications....none of which was to prepare me for the last three or four days living a nightmare in the medicine world. PD(Parkinson's Disease) and I have become very close friends(?) in the past three years and though he is a very hard house guest to get along with , we have co- habitated in my body as need be until along came this trouble maker RA(rhuematoid Arithritis). After many xrays and blood tests, Wednesday I was officially dx with not one but both.. which means at 61 for the thousandth time every thing in my life goes out the window and I start over from scratch. Two weeks ago I was taking 30 pills a day and going steadily down hill...A large amount of these were vitamins, Parkinson's meds, blood pressure and pain meds. Today I start a new plan none of which will cure me because there is no cure for either of these diseases. I can only hope the combination of doctors and meds I have chosen will give me a few more years of mobility......

There plan now for me is a new cancer med....I will basically start medicinal cemo by taking these three little pills once a week at eight hour intervals. They take two months to take affect if I can tolerate them. With them I will add to more pills for whatever...Then as far as the Parkinson's Disease goes I will stay on basic 10 for that, 1 blood pressure and selected vitamins. The gain from this in three months, should be much less pain and more mobility.....The loss will be I loose my immune system....I am to avoid all disease when confronted and if I should even get a cold I am to go no longer than 48 hours before getting on antibiotics. The diet will consist of mo dairy, very low carb, no red meat .......Mainly veggies and fish and lots of pure water..

This at first sight seems to be an unsurmountable task to accomplish BUT I full well understand my Lord's thinking in this and I will not fight his wishes....I am in the position to make a difference in patients with this disease and possibly the search for the cure of either and I will try with everything I have and every brain cell I have left to address this mission on a daily bases for as Long as I can....I seem to be able to find humor, though it may be black humor, in any situation and I plan to use this ability to it's most degree....So far the most part I was a quiet visitor at PD and RS's wedding but in the back of my head.....just kept saying Please don't let these two hae kids.....POKIE