Changes in the Air

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This is and has always been my favorite time of year.  As a farmer the crops come in and the gardens are put up in anticipation of a hard winter.  No matter what my circumstances, I have always put vegetables up and laid in supplies for the winter.  It may be really important this year to be prepared because of our condition and the threats of flu.  I plan to stay on the farm as much as I can stand it and be exposed to illness at a minimum.
Mom and I visited the garden today for the last of the peppers, tomatoes and watermelons.  Tomorrow we will harvest some sweet potatoes and regular potatoes.  This activity really makes my mom feel good.  She lived through the depression in a family of twelve and the present economy scares her terribly.  The more she sees me putting up the better she feels.  Nothing must go to waste because throwing away is not in her being.  It's funny how she can remember that time so well and yet her daily tasks are so frustrating.  We co-hab in a split level from the sixties and if she needs something upstairs, by the time she gets there she has forgotten what she wanted.  God bless her she tries and works entirely too hard for someone her age.  I see the fear in her eyes at what is going on around her and it makes me so sad.  We passed our doctor of thirty years the other day at the hospital.  It was me with Parkinson's and my mom with Alzheimers and my eight year old granddaughter.  As he passed he started laughing.  I looked at him and my reply was, "What?"  He answered,  "It's hard to tell who is taking care of who."  Some days I wonder the same thing.  I know we are just beginning on the journey through the real changes.  She has always had someone to take care of her.  First her older brothers and then my dad and now me. She does not understand what is wrong with me and why I am so tired all the time and even if I explained whe wouldn't understand.  I am becoming the mother and she the child except I cannot walk.....Oh, well thank God we are farmers because there is always something for her to watch or piddle with out here and life goes on regardless of change....love Pokie

What Is Going On?

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Just when I needed to be picked up and refurbished, along comes this awesome summer. Nothing like this have I ever seen in Illinois but I am loving it to the last minute. Some of my favorite things are really simple and one of them is feeling the breeze and watching the curtains billow in the wind through an open window, absence of heat and humidity, sunshine, fireworks and lunar eclipses. All of these I have experienced this summer and loved it. How great it must be to be in the new stadium watching the Cardinals going all the way. I am pretty home bound now but the idea and dream are almost as good as the real thing.With all the rain and the size of the weeds in the country, possibly one would think there was no beauty to be found in an overground yard but they are wrong. One particular patch of weeds in my yard are at least twelve feet tall, much to the dismay of my kids until yesterday. As I was eating lunch the Monarch Butterflies came in in groves landing on top of these ugly weeds transforming them to works of art. The power of the mind to find a better place in times of strife is amazing and should be given attention by all. Even New York City has learned the benefits of down time with their second hand lawn chairs in Time Square. People are just taking a chair and watching the world go by on their lunch hour...how cool. New York is one of my favorite cities and finally it's great people are learning to slow up, rest and watch the people around you...and it's free...try it...love pokie

What a Game Parkinson's Is......

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This Parkinson's Disease really keeps one on their toes, if you have any hope of keeping up. Everyday is a whole new ball game but there are no time outs to regroup. Every inning is intense and suspense activated. If Joe Parker is the Pitcher, (Parkinson's) he is the best the coach can send in. I pray for a slow ball and he pitches a curve. I pray to just hit the ball and maybe make it to first . He pitches that curve....I strike and I am out for the inning. Now if I am a good player, which I am, I square off my shoulders and walk proudly away. When my next time at bat comes up, I give him my evil face and hope I will scare him. I keep my Parkinson's eye on him and my good eye on God and swing with everything I have. I am not a Albert P. but somewhere in my brain I think I might be if given half a chance and me and the ball connect. I cannot run but I head for first and they fumble the ball somewhere in left field. With my head down and one arm swinging, I am repeating. "I think I can, I think I can." Hell has no fury like a sixty three year old grandmother on a mission and I make it to first base huffing and puffing all the way.

As the inning progresses, two of my team mates are up to bat and strike out and then up steps "Big Albert" to the plate. All eyes are on Albert and I can hardly think for the pounding in my ears. I pray, "Please not the curve ball." but sure enough here it comes BUT Albert goes for it and connects and it's gone! Joe Parker watches as I stumble across home base with Albert in close pursuit yelling, "Go Parkinson's...Go for the Cure." and we win in the ninth Two to Nothing. What a dream, huh? love pokie

These are the Days.......

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I have always been an artist in my soul. I always saw the beauty in the smallest things and loved not only sunlight but moonlight, fall and summer. The coldest days and the deepest snow were an amazement to me. I could watch that snow falling at night, glistening like diamonds and almost be in a trance. I once watched an eclipse with all my friends on PLM as it traveled from the East Coast to the West Coast and we posted on the forum all night like kids at play. I've walked in the rain and made snow angels in the snow and now God has chosen me to be blessed with renewed friendships from forty five years ago. Out of nowhere friends have been contacting me from my early years. Next door neighbors, girlfriends from high school and many more people I never expected to ever see or hear from again. God has given me another chance to make it ALL right and let them know how important they always were to me. They will never be taken for granted again. In the past week I have made friends with people I never expected to meet and was given the chance to stand up for my passions and speak my piece. It seems I was taken to the bottom of the bucket in the last six months so I could appreciate now even more.

My favorite poet Helen Lowrie Marshall once wrote in "These Are The Days"......

These are the days.....these autumn days.

When memories haunt us most;

When our Yesterday's Self goes wandering

Like a restless little ghost

Down long forgotten pathways

Of things that use to be,

Vainly trying to fasten leaves

Back on a blaze blown tree.

But oh, these two are golden days,

With beauty unsurpassed...

Days when our life brings forth its yield

Of riches from the past;

Days when the golden wealth of joys

And tears that we have sown

Has reached its ripe fruition....

To strength and beauty sewn.

These are the days...the harvest days

When life is rich and whole...

The spirits golden bounty days

Fulfillment of the soul.

There is one thing I must say............I learned of a dear friends change of plans in life and I pray it's for the better. If I never see her again I would like for her to know she will be greatly missed but her smile and huge heart will never be forgotten and I wish her all the success and happiness that life can bring her because she is one of a kind "Missy I will always love you like my own".....Pokie

Senator Kennedy

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I awoke this morning to the news I had once again lost a dear friend.....a friend I had never met. Not many weeks ago his sister and now him passed leaving such legacies for us all to follow. If I were to make a list of the ways he has affected my life it would be endless. He made mistakes in life but was not afraid to come back and show how much he had learned.....He was human and I will miss his true grit in face of loss and that New England humor that brought the light back to a dark day. Heaven must be an interesting place today as all the Kennedy's that have passed join together to compare notes. I'll miss you one and all...love pokie

Another Penny Showed Up....

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People who really know me, know what a huge part pennies have played in my life since January of 1996. That was where most of my medical story begins with two grandmal seizures. They tell me I died twice that day and by the grace of God am still living. The night before I had a dream about a shinny new penny....a very long and detailed dream that I remember in great detail to this day. Seven days later, when I was showering to leave the hospital a shinny new penny appeared in the shower stall between my feet and at every major event or crossroad in my life I have found a penny. They are not always new and sometimes are very tattered. I always pick them up and thank God for remembering me. Yesterday I was seeing a Movement Disorder Specialist for the first time and went to pull out my medical cards and out falls a penny from my cards. After the events of the last three months, I considered this Gods way of letting me know I was on the right track once again and to carry on. I never pass a penny by even though sometimes it is all I can do to bend down and pick it up.....the lowliest of chance making such a difference in someones life.

Where Is Time Going?

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I cannot believe it is now mid August. Four more months and Christmas will be here...and WINTER. The word winter strikes the fear of God in most people who have Parkinson's. Using me as an example, I can only tell you that cold weather and further isolation are not my thing. This summer has not been like most. Cooler than usual and very wet in our part of the country. This would be bad enough but my friends seem to be having an exceptionally bad time with life right now. One is fighting Lymes and is having more bad days than good. One has spent the summer fighting varicose veins and wonders if she's winning and it goes on and on. My own health has been really scary, to say the least and so this morning I sat a new goal and decided to blog my heart out. When I opened my St. Louis blog, the question was,"What is the best Christmas present you ever received?" PLEASE....I realize I am old by some standards (63) and slow by some standards(Pokie with Parkinson's) but am I missing something here? We have not had Halloween or Thanksgiving and we are wondering about best Christmas. I guess maybe thinking about it is not bad but something here sends up red flags in me. How fast do we have to travel in the life? Everyone around me seems to be going at Warp speed.....Is it just me or as they zoom past, do they have an ability that I no longer have? Can they get Everything done and still enjoy life, or are they just going through the motions? Could I just be too sensitive at this stage and looking for faults? As I am passed by in the slow lane, I can only say this, "I like the slow life in the slow lane." Though my life gets slower and slower, as it will.....the colors seem brighter and the emotions stronger. I heard someone mention yesterday that when once watching people die in a plane crash he saw their Ora's traveling toward heaven and some were brighter than others. He decided then to spend his remaining life making his Ora brighter. ME TOO! Maybe I will just pray for the present of a brighter Ora this Christmas and the time to make it the brightest ever,,,,,,,,love pokie

Wishing on a Star

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Do you ever get too old to wish on stars? Possibly so....Maybe when you get older not so many stars fall out of the sky for you to wish on because your time is running out for them to come true. I listened to the St.Louis news last night and believed them when they said last night was going to be the biggest of meteor nights from12 to 5 am and so as only a kid at heart would, I fixed my peanut butter sandwich on wheat bread with a small scoop of jelly and filled my thermos with cold milk and grabbed a blanket. It was three am and I was in the car looking for meteors, or wish able stars to me. It's a wonder the Bogey man did not get me, sitting on a deserted country road in the middle of nowhere waiting for this explosion of meteors to grace my view. Well I guess two is better than none and I cannot tell what my wish was because you know it will not come true if you tell. I can tell you it had something to do with a cure for a foxy disease that seems to be playing with me.I sat down there in the dark and ate my sandwich an milk and was able , by the grace of God to find the big dipper and little dipper. I thought this was a remarkable feat considering how long it had been since I had searched them out. As I laid there on my car hood, quite content, I realized just how funny it would have been if someone had been driving home from work and come up on me. It would probably been the determining factor to me being committed to a home. I pondered this thought along with the beauty of the night and the masterpiece God had made for me and decided I would be satisfied with two stars. Why should I get greedy in my old age? One would have really been enough and then one would have to decide whether I still have the patience to wait for my wish to come true. Well as I thought all of this over, I decided the old recliner would feel much better on my back and headed home. Another night another lesson learned.....don't be greedy just take the star you get.....love pokie

Following Old Paths

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A long lost feeling crept into my being today, one that I have not felt for over a year. I went to the garden to pick a few tomatoes and felt that old "farmers rush" for the land. I may have been running from this feeling.....silly me. A farmer I am through and through. Many a good hour has turned into a day tilling a garden and making sure absolutely no weed was left hiding under that special tomato plant I had ordered from so far away. Every row was straight and marked and as volunteer plants appeared, I carefully marked and moved them in new rows. My garden was a show place and I knew it. I had bird baths and windchimes and whirlygigs. I even moved the grass around it and had chairs under the old apple tree so one could sit and survey the surroundings. For two years now I have refused to think about these feelings because I knew I could not do the physical work required for perfection, but did it need to be perfect and did it need to be huge? Would just a simple raised bed in the sunshine had sufficed?
When I left for the birth of my last grandson my kids hauled my goats away.....Sadie and her two kids, Yopn and PD. I had raised Sadie from six weeks old. At age seven she blessed me with twins. She never missed a day of bringing them to the back door to show them off and then they were gone.
My children meant well. The billy goat had broken my leg in the winter out of jealousy and ended up as sausage. Yet, some things that are your life need to be sacred and safe from harm. Today as I picked those tomatoes I missed the smell of the earth and joking with the goats. I missed the feeling of peace in the open spaces. It will no longer be ok for me to take vitamins because I am not in the sunshine, because I will be outside hobbled or not. What fits into the children's schedule may not be good in my schedule. I realize this makes me crazy and hard to handle in their terms, but if they can remember back I have always been a loner. I have worked like a man most of my life...not because I wanted to but because I had to and what has it gotten me? Arthritis and pain but when I was working I was satisfied and healthy and God willing the South will rise again. If it is nothing but a walk to the garden or a morning stroll around the lake I am getting back out where God had me in the first place. God has been right there waiting for me, yet the recliner seemed easier and soon the day was gone.....the devel was in the recliner and fell for it. So all bets are off and I am going back to the old me......slower and older and much more febble but happier.....love pokie

Never Give Up......

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Well here I am and though I may consolidate all my writings into one site , I am here now and that is all that is important. I have taken time to visit with Friends and watch the Cardinal Baseball Game, read several books and sleep way too much. I needed to rest for one thing but most of all I needed to be sure where my PASSION is and how to pursue it. My passion is writing and in the past three years I have wrote stacks of sometimes meaningless and sometimes meaningful pieces. I turned articles out faithfully every night in three locations and loved it. Friends have advised me that this is overkill and I should cut back or put all the articles in one place. This is hard to do because "Coffee With Pokie" has always been for fun and"Today With Pokie" has been from my heart, where "Pokie Journey" always seemed more commercial. Blending may be hard and maybe I won't but changes are in the air for all the things I have going on right now. I can say I will be more careful with my health this time or my family will not let me continue and that would be devastating to me....Bear with me in my rebirth in the coming months and let me know what you think.......love pokie

Scared Me To Death....

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I have so much I want to say and no way can I get it all out. In the past two months I have been lead to believe I might have had a heart attack and another was just around the corner, I was a diabetic, and probably had cervical cancer. All of this false hood resulted in multiple pre-op tests and one gynecologist said he would not touch me with a ten foot pole.....and I should only have surgery in a center of excellence with a trauma room. Now two months later and four specialists later and four two hour all day trips to Springfield, Illinois and I am now told my heart is fine with blood pressure of 120/70. Yes I am overweight and 63{old} but so far no cancer and for sure no D/C which they were" preoping "me for in the first place.

Could a couple of small town doctors saw a good set of insurances(medicare and Cigna) and decided to put the worst on the results and see if anyone bought it? Check these out
one chest Xray
one lateral xray
one MRI lower lumbar
blood full blood work
one sonogram external
one sonogram internal
one set of bending Xrays
3 pelvic exams
and these specialists, spinal surgeon, 3 gynecologists, heart surgeon, general practitioner and a movement disorder specialist.

I went to the last gynecologist Monday with two sacks of med one a gallon ziploc with meds I use to take and a pint ziploc with what I take now after two months of weening myself of of all my PD meds.....He actually is the second doctor to applaud me for doing this ...I WAS EXTREMELY OVER MEDICATED and exhausted.....

This has been a wild two months and though it is not over yet...it almost is and I shudder to think I could have had a D/C for nothing......I would truthfully say the system let me down....love pokie too

Hanging Out With the Right Crowd

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This is Abe and I from the recent Neurological Disorders Conference in Vandalia, Illinois.....

Always Trying to Catch Up

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I've been away for awhile but never a day went by without thoughts of something I needed to write. I keep a notebook by my bed and often just jot down a thought or line to a poem and roll over and go back to sleep. By morning the thought would have disappeared into the sunrise and even with that note I sometimes have lost the thought all together. My Parkinson's disease has decided to make it's self known to me and the world and for the last two weeks I have traveled from doctor to doctor trying to get half way fixed or medicated. We will see this week what will happen and where this is leading. But never fear there is no end to my fighting PD with all I have and none of this would be possible without my friends from Patientslikeme.com.....my home away from home.

Now let me tell you what our beautiful guilt is doing.....she is resting while everyone who did a square is sending in a story about their square. I have received many stories and they will amaze you someday. The love sewn into each square just gives it life. I received pictures yesterday from the 2009 Parkinson's Unity Walk of our team Team PLM which netted $13,694.85 in donations this year....every penny of which goes to research. She has also been entered in this years Parkinson's Disease Foundation Creativity Contest. When she starts traveling again, she will really travel for the world to see just how productive PD patients really are. Yes she is indeed Beautiful. love pokie

YouTube - PatientsLikeMePD's Channel

YouTube - PatientsLikeMePD's Channel

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Parkinson's is One Crazy Disease

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This Parkinson's Disease really keeps one on their toes if you have any hope of keeping up with it. Everyday is a whole new ball game but their are no time outs to regroup. Every inning is intense and suspense activated. If Joe Parker is the Pitcher, he's the best the coach can bring in. I pray for a slow ball and he pitches a curve. I pray just to hit the ball and maybe make it to first base. He pitches that curve, I strike and I'm out for that inning. Now if I am a good player, I square off my shoulders and walk proudly away and when my next time at bat comes up, I give him my evil face and hope it will scare him. I keep my Parkinson's eye on him and my good eye on God and swing with everything I have. I'm not quite a Albert P but somewhere in my brain I think I might be if given a chance and me and the ball connect. I cannot run but I head for first and they fumble the ball somewhere in left field. With my head down and one arm swinging, I am repeating, "I think I can. I thin k I can.".....Hell has no fury like a sixty two year old grandma on a mission and I make it. .......Huffing and puffing the whole way.

As the inning progresses, more of my teammates gain hits and move me around the bases and then up steps "Big Albert" to the plate. All eyes are on Albert and I can not think for the pounding in my ears. It's that old curve ball BUT Albert gones for it and connects and it's gone!.....Joe Parker watches as I stumble across home base with Albert in close pursuit yelling "Go Parkinson's....Go for the Cure" and we win in the ninth two to nothing......What a dream ....huh? love Pokie

Finally a Light

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Finally this week after three years, I think I have coordinated my health care in all phases. I have had to have so many specialists with all my malfunctions.....Neurologist, orthopedic surgeon, rheumatologist, and general practitioner. Often egos interfered with who would do what and then nothing would get done but this week after three years my neurologist took the big step and we are off in the right direction. I have always thought if all of my doctors would confer with each other I would come out better in the long run. I would get more testing and have a wider array of opinion as to the problem. On a three way connection this week they talked about my blood work and MRI's I had had and whether or not I had a major infection going on....My MRI's were showing spinal shirkage but my Neuro stepped in and said "NO Surgery" and got with my GP and ask to go ahead on a ultra sound to track the infection. Meanwhile my Rhuematologist was right in there tracking my blood test and monitoring Diabetic activity and Potassium levels....potassium too low and sugar too high.
Also I had my pharmacy try to charge me $444.00 for one prescription and had I paid it , it would have been gone....I refused and called my insurance and got it for $22.00....Also a $145.00 doctor bill was not billed through medicare first and denied.....Don't just step up and pay these bills because it will be your loss....and every penny is important right now.
Best of luck with your doctors and follow your heart as to what you think is right . Don't be afraid to change doctors if you don't get results.....I am very pleased with my team...love pokie

Getting Old and Laughing at Myself

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This getting old is a tricky thing. And when do you go through it? When your too old. Too old to finish a thought without getting side tracked. Too old to see the seriousness of something you think is funny. Too old to do what your kids tell you to do without a comment that only gets you in more trouble. I guess it's a blessing that God saves Old for last...so we can savor the moment and even though we may be the only one enjoying the humor of it...we chuckle to ourselves and walk away while someone, somewhere is shaking their heads in disbelief. Blundering through life is one thing and then you realize that education is drastically needed to complete the goal. With three years of college behind me in the Young phase of my life, I think I could really enjoy and learn something now. College was actually a social event in our town. It was something everyone did after high school but not much was learned....Now in he quiet of my Old phase, maybe things would sink in better...I can only hope I have enough active brain cells to understand. If I don't, I'll just have something else to laugh about.....lol love pokie

Thunder and Rain....

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Last week , when the first storm hit south of us, I laid in bed and thought about the thunder. When traveling back from Washington, D.C., we flew thought a distant thunder storm and it was the first time I had seen lightning bounce from cloud to cloud. In the dark it was an amazing sight as are all of God's viewings. Of course I could hear no thunder and soon we were on the ground and life went on. But the other morning I remember thinking, "This is thunder that scares dogs and kids and grandmothers." It was not your usual rumble but a loud band that just kept on rumbling like marching soldiers traveling down a dirt road...line after line, until you could see them no more. Early this morning my chocolate lab just opened the door and came in so I knew this storm would be a bad one. Even now as I type, he is lying right next to my foot. Poor soul, as a baby he was forced to live in a hog crate, outside in storms until rescued and I got him, and to this day, if it storms he has to be in and goes to the bathroom and sleeps. Somehow in his mind he has found his own pen and he feels safe there. Not so different from Parkinson's patients tending to make their safe place around them as time gets worse. Often times we make excuses to keep from going out. If we don't go out we only have to deal with ourselves and no one can hurt us....just beware of this fallacy. It will pull you down , especially now. Look at the 64 year old man last night who entered a weight show and won after suffering a heart attack right off the bat, and the lady from Scotland who sang with angels and no one ever listened. How about the goat farmer and her travels of the past year? Venture out today, after the storm. Don't be afraid of the thunder...sunshine will follow. love pokie

The Conference Was a Success

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Where I able to give a gift to every Parkinson patient, I would give a visit from these four people, David Zid, Jackie Russell, Debbie Guyer, and Dr.Max Benzaquen. these four people made our conference and then some. David and Jackie Pulled the group together in a circle and started very simple exercises aimed at the novice. As simple a movement as putting you hands together in a praying position in front of you and pushing can help someone with Parkinson's......or propping your feet up on a hassock for fifteen minutes. Tiny little things can make all the difference in our day. Have you ever considered which leg you step into the bath tub with? Try standing on your Parkinson leg(the side the symptoms present). It usually is pretty good at freezing and you can lift the other leg farther and higher. Hold on to your security bars and try it. It works for me. Baths or now impossible for me and oh, how I miss this....With two replaced knees and shrinking vertebra it is just out of the question...Next, I guess is a sit down tub.
One of the attendees has had Parkinson's for thirty years and spends most his time in a wheelchair. He has always been my idol for his sheer style in which he handles the disease. In my book, he and his wife are a class act in all ways. With David in front and Jackie behind, they had Bob out of the wheelchair and standing and smiling. David and Jackie just radiate love and kindness on all sides....I am so blessed to count them as my friends.
Then come the St. Louis crowd. Dr Max could have been very standoffish to the audience, but instead went person to person talking to them about Parkinson's and their treatments and doctors.....At one point he touched Bob's chest and said"Ah, very good!" ". You had a very good Doctor" He has three hundred patients in Chesterfield, Missouri.
Debbie was an integral part to the whole program. The information she provided before hand was worth everything to me. and her program on LSVT was so warm and aided by an actually participant in the audience. The whole day was friendly and comfortable for all and the actual community united with the Parkinson's Community for advancement of both. Thank-you all. The word is out that there will be a second annual except not wait a year and go for the fall....Love Pokie

AH, TIME TO REST

Central Park April 26,2009 15th Annual Parkinson's Unity Walk

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Yes, we got back on Monday, almost 24 hours later than we had expected. My daughter and I couldn't get a flight together even though we were leaving New York City about the same time and as the day moved on I was in St. Louis by five and she was in Baltimore and then she was in Cleveland and at eight the next morning she was in Chicago.......trying desperately to get to St. Louis and me. The Airport Marriott in St. Louis allowed me the comfort of their space for the night and at 10:30 the next morning in the door she came. In two hours we were home and without even unpacking, I started on the conference scheduled for Saturday morning here in town. I had no idea just how tired I would be Sunday morning....and everything was over that had been going on for a year. I just sat in the living room chair Sunday and stared blankly at the TV, nodding out for a while and back to staring at the TV.
Ah, but now it is Tuesday and I have recovered. I have my meds straightened out and ready to go back to being a good Parkinson's Patient who drinks plenty of water and takes his meds on time and sleeps when he needs rest. I'm in to mailing photos of the Unity Quilt to all who made squares and had anything to do with it. She has been "oohed and aah ed" from every angle. Her story has many sides and my wish that everyone who made a square gets his story told. It should be an interesting year for sure.....love pokie