Tuesday, September 30, 2008

Final days before California

Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I ran around yesterday trying to be so organized and finally realized much too late in the day that organized is not something you just wake up and have. Today is Tuesday and on Friday I fly to Colorado for the Davis Phinney "Victory Summit" and meet up with Nicole(Browncat) for the day. After the conference ends Saturday, I will get back on the plane and go to California to connect with Bnana and Ukelady for three days and then head back to Denver to spend time with my brother. I have planned this trip for months and cannot seem to get in my head that this is the last week......I am really going to go. I'm going to become a Calfornia Girl. I would like to add this in for Karen ,,,,I found four pennies at separate times yesterday and so I know God was very much with me all day...

Yesterday was also another huge milestone. the first support group for Fayette County opened it's door at the hospital yesterday with me at the pilots seat. This is a passion of mine for a year. I have collected boxes of tapes and books and free stuff to give away and loan to the group and the meeting went very well......thank you again for all that contributed to my success and the counties. Quite often in this area, we see people who are struggling with PD yet have never been diagnosed. As miracles will happen though, the first person in the door was a caregiver for a PD plus patient, diagnosed for three years and in serious progression. I will be able to help her so much with the huge amount of reading material I have and she in return will be able to help me through observation of his progression. By the minute lately, it amazes me at how intricately God intertwines our lives and in doing so enables us to help each other survive the struggles and share the burdens that befall us. My belief is this is the true meaning to Christ......how we interact with our fellow man and lessen his daily burdens so he may once again lift his head and smile....

I once again say....I look back on the last year with amazement. The places my friends and I have traveled and the peoples lives we have impacted is beyond belief. Why God has entrusted me with this huge responsibility, I will never know but everyday I strive to make him proud.

Once again, this morning I turn to H.L. Marshall and her poetry:


This business of living was meant to be more
than plodding along each day
With head bowed down and eyes on the ground
While Time ticks the hours away.

God made this world a delightful place
With beauty everywhere...
The grass, the flowers the trees, the sky,
The tang of clean, fresh air....

A world to be lived in, laughed in, loved,
To be met with joy and zest,
A world with a challenge for each of us
To give it our very best.

This business of living was never meant
As a treadmill sort of thing;
There are rivers to cross, and mountains to climb,
And glorious song to sing!

Helen Lourie Marshall

Thursday, September 25, 2008

This is the last time for this offer

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"The future is where we will spend the rest of our lives, and it is our choice whether we look forward with confidence and courage or walk blindfolded toward some imaginary doom." I read this and I knew this was something that was going to shape my day. With all the things that are going on around me at this very instant I really do not have time to be down or feel self pity. Things are falling apart faster than I can do maintenance on them. Propane was once, not to long ago, 79 cents a gallon and now it's $2.29. Of course that is if your lucky. All the while knowing you must multiple that times 500 because you have a 500 gallon tank and winter is coming in very rapidly. You downsize and stockpile and regroup the picture is just a little scary. And then all of a sudden you hear this voice in your head saying," just go ahead and do it." 'Do what?' you say. And the voice gives you some off the wall answer. At first you dismiss it but all the while you know you will finally face the fact that another adventure has been planned for you. With this disease, I would like to just curl up in bed and stay there. This would be totally out of character for me and I am sure no one would let me get by with it, but it doesn't keep me from wanting to just pull those covers up over my head and sleep right through every responsibility I have.......for a day or maybe a week. Instead I spring out of bed and get my suit case and off I go. To points unknown.

My future was laid out today in no uncertain terms. I had a meeting with a Orthopedic Surgeon who told me I did not have rotor cup problems but did have extreme arthritis in both shoulders and particularly in my left shoulder. It seems the only thing going for that is take the pain as long as you can and when that no longer works have the shoulder replaced. I already have two new knees and could use two new hips. If I get two new shoulders, I should be good until I'm one hundred and twenty with a a twenty year warranty on each set.......I'll never make it!

This evening I attended a town hall meeting at the hospital on "What is Wrong with our Healthcare?" It seems President Elect Obama would like our input and I pray he does because it could sure use some fixing. Today 25 people in a very small midwest town talked for the first time on the problems and what could be done to fix it if the government wanted to. The big thing that kept coming up was insurance and the monopoly they run and how badly it is hurting the American people. I took notes and did a lot of talking and in the next months i will be writing volumes on this because March i am going to Congress to lobby for PAN........love pokie

Sunday, September 14, 2008

An Ounce Or Two Of Heaven

Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

I should like to buy a perfume,
Nothing fancy, something plain
I had in mind a scent
Of city streets washed clean with rain;
Or, possibly, the fragrance
Of a baby freshly tubbed;
Or the spicy heady odor
Of green mint leaves crushed and rubbed;
Do you have that grand aroma
Found in fresh baked home-made bread?
Or the luxury laden fragrance
Of clean sheets upon the bed?
How about the smell of bacon,
Crisp and brown and sizzling good?
Or the dreamy, smoky odor
Of a fire in the wood?
Perhaps you have the crispy smell of Autumn in the air,
Or that more seductive fragrance
Of a spring day, soft and rare..
I should like to buy a perfume, Any simple scent will do....
Just an ounce or two of Heaven
Made up in an earthly brew.
H.L. Marshall

It's 7:00 Am on a rainy Sunday morning in the beginning of the Fall Season for Illinois. I slept really well last night though I did that "Parkie" shuffle from bed , to couch, to recliner and then finally to my computer chair. I have fixed a coffee cake for mom and I for breakfast and a fresh pot of coffee is brewing and the smells are everywhere in the house. It amazes me that God built such a amazing house for us to dwell in for our lifetime. Smells are sometimes missing from the life of someone with Parkinson's Disease and then often they are replaced by episodes of foul odors that invade the brain and they go away just as fast as they came but this morning I am celebrating the life that My Maker presented to me in grand style. I pray for those who have nothing of what I have this morning. I hope they find shelter from the storm and have a friend by their side to help them every step of the way. As I watched the Hurricane Ike roar ashore in Texas yesterday, I knew there would be not one person left without respect for the world around us. Though we continue to build and collect and pull belongings close around us, sometimes it is only the very basics that are left behind for us to hold on to; a smell, a smile, the colors in a sunrise, the chirp of a bird on a distant branch.

This morning let's try this. Take a deep breath and as someone told Bnanana one day, "Breath in the breath of God and breath out all the bad things inside" Let's try this real slow and as we are doing this, lets close our eyes and smell all the roses near and far and pray for those who have lost everything this morning and pray they find the strength to carry on. Amen

Monday, September 8, 2008

Barbara in Atlanta

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While in Atlanta for the Young Onset Parkinson's Convention, I met a little lady called Barbara. She had this radiating smile that caught your eye from across the room and pulled you to her side. She had a modest little table set up and was selling her book. It only has fifty three pages and is a tiny little thing by size, but by content it is so personal and touching. it speaks volumes to all I have given it to. Books are my very favorite gift to give. And usually I will give a book that I have used often and wrote in because my books are so personal to me that I feel I am truly giving a piece of my heart and this book means so much to me. STRUGGLES WITH LIFE: FROM THE BEGINNING TO THE END WITH GOD INTERTWINED......by Barbara Hogg

Barbara was selling her book but if someone could not pay or shied away she just gave it to them. She was only asking six dollars and was still giving it away....I got a book and had her sign it and as with every book that was given me in Atlanta, I read it and wrote about it and it's author when I got back. Well Barbara I have neither forgotten you or our last night together in the hospitality room when most all of the conference attendees had left for home and there were about eight of us having a round robin discussion on bloggs, writing , Patientslikeme.com and Parkinson's and anything else that crossed our minds. All of a sudden Barbara says, "Pokie, this is what I do to relax at night." and she started to sing Amazing Grace and do a form of signing as she sang. It was so beautiful and you could see and feel Barbara's faith as she shut her eyes and drifted away along with her audience of eight who were totally captive to her every move.

In this room was a female ex Harley rider (or maybe she still rides) . Me, still finding out who I am. Karen Painter, the designer and maker of the beautiful tulip pen. Another whole story in itself, because I loved her heart.....I would often glance over at her and her eyes would be filled with tears at what was going on. A drug salesman from the Midwest, fascinating guy. A couple that I know very little about except she spoke with a very heavy accent , maybe Swedish and she painted tiny pictures of nature and the out of doors on little framed abolone shells. They were so fragile and delicate just like her yet they were so strong in their presentation. Her husband had Parkinson's and they sat quietly holding each others hand the whole evening. And last of all their was a young newspaper guy from Ft Lauderdale, Florida who didn't like bloggers. This odd group spent maybe six hours really hashing things out before declaring total exhaustion knowing we would probably never meet again......but this I will say:

If you get a chance to ever talk to any of these fascinating people please do.....they will make your day and enrich your life more than I can possibly tell you. Thanks guys for the experience and good luck , always.......love pokie

Friday, September 5, 2008

Can we be next Lord?

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I have had two nights of wandering from place to place. Something inside me keeps screaming, "Use me". Is this God? If so I'm ready. Tell me what you want me to do. I'm watching the Cancer special and am so impressed by the magnitude of the message and how beautifully it was delivered. I could take the names used and substitute friends of mine with parkinson's and related diseases and hurt just as if they had cancer. I cried for those friends and myself just as if we had cancer. Do we with Nuerological disorders have our day coming......Can we have an hour on Prime Time TV? Why must all of this be separate to be cured? God made us equal. Can we not be cured equally?

As you can tell this past hour upset me greatly, just as many things seem to these days. As I said in the beginning l am wondering where to go for the best results. If someone reads this and has a vested interest in Parkinson's and it's cure or help for it's sufferers, please get in touch with me and I will do all I can. We have to unite.....this has to stop....now.

I must say this, I have a friend who lost a son to a horrible cancer......I cried for you and our loss tonight. My granddaughter lost one of her favorite teachers to cancer this year. One of my doctors from years ago lost 2 of his 3 sons to brain cancer. I lost someone I had loved for years to lung cancer last November. Tonight I cried for all of you and weither I knew you too well or knew you not at all, I grieved the loss of you from this earth and I felt the pain of people left behind....

My thought is this we are responsible for our time here on earth and each makes his own mark on that world only if he's here an hour or a year or ten. The ones's left behind must continue the forward motion........"Use me Lord" Pokie

Friday in the Country......

Blogger: Today With PokieToo and Parkinson's Disease - Formatting Settings

Here it is Friday and a week has went by since my mothers adventures into the world of heart attacks. Bless her heart she has been a dream to take care of. I catch her doing little things that show me she is still very much the head mom in this household and that's is perfectly ok with me. My granddaughter Katie called yesterday to let me know that she was coming this weekend to help me take care of Mau Mau Neil so we will probably have a tea party and play house ....something grown-ups forget and young ones are all to eager to have us remember.

The first night mom seemed to be fighting with something in her dreams. The expressions on her face were horrifying.....for a while she would be mad and then the looks were truly mean in character. I ask her and she remembers nothing or no one. What a blessing God has bestoyed on her at this point in time. She seems to have let the past go and is enjoying the present and life seems to be good.

Yesterday I ventured off to St.Louis to my Rheumatologist in hurricane Gustov. Needless to say my blood pressure was up by the time I finally made it to the office. I can't say I have ever drove in anything so terrible in my life. Fog and trucks and over seven inches of rain, teamed with my poor vision and nerves made for a very long trip. Usually I can get there in two hours , it took four......Now I don't go back till December when we will be dealing with snow. The meds were all increased for one condition or another.....mainly the swelling and knotting of my ankles.

So today I plan to answer my emails and watch tv and just generally relax.....mom and I might start a puzzle today and take a walk.....thank you Lord.....life is good Pokie

Today With PokieToo and Parkinson's and Acute RA Disease