Saturday, July 25, 2009

Beautiful Music For My Soul

Anyone who reads this....... pleases watch this amazing video. It will lighten your load, help you smile, fill you with happiness. It is quite a moving, beautiful experience. One of my Parkinson's Forum friends from the UK shared it with us. I love music in all forms and this is the most unique, brilliant idea tha came to life because of another person's love of music and more importantly, the musicians...........no matter how far away or what social status or walk of life. It all boils down to this. We are all in this together.

Wednesday, July 22, 2009

Life With Parkinson's in my 40's- #17 Excerpts from my story

I was waiting in a sea of orange chairs with people attached to them. I was in my least favorite place in all the world; the Department of Motor Vehicles. My nerves were shouting at me. Was I shaking more than usual? Was that man sitting across the aisle of chairs staring at me? On droned the female computer voice announcing what number could be helped at window #11. My number was very far off. I had come to this awful place to renew my drivers license. I was very forgetful these days. I had been in a pizza parlor a few days earlier buying dinner, trying to hide my shaking hands from the clerk, when he said suddenly,
"Do you know your drivers license is expired?"
He had looked at it briefly to verify my identity and thought it was really funny that it was expired. I couldn’t believe I had let my license lapse. So here I sat. I had to take a written test and an eye test, the usual. What horrified me was the paragraph on the back of the renewal application. Do you have Parkinson’s Disease? I didn’t hesitate for a minute with an answer. No! If I was being dishonest in my answer then so be it. I would have my license revoked forever, quick as lightening, if I answered yes. I had a family to taxi. No one else would do my shopping. I was forty two years old for crying out loud. How could I have Parkinson’s?! I wanted to scream. No! No was the answer. Number D49 can be helped at Window 14 came the eerie female voice that was not attached to a body. I double checked the monitor on the wall. There was my number. I slowly approached window #14. My heart was pounding. Was I limping? I straightened up as good as I could and tried to smile, a huge task. The clerk barely looked at me. He looked very tired and overworked. I went through the motions and followed his instructions. Soon I was standing with my feet covering the red feet on the floor and flash went the camera before I could prepare my face to smile.
"You’re done. You’ll get your license in the mail" he said without looking at me.
He was gone in an instant to help the next number. I still had my license! Hallelujah! I left feeling triumphant and grateful for this small favor.
My feelings would soon change.
********************************************

I found myself inside a very spacious but empty house. It was dark and quiet, eerie. I could see bare windows but could not see outside. Something did not feel quite right here. I sensed that something or someone was watching me. I walked from room to room moving slowly, nervously. The more I moved through the house, the more frightened I became. There was no one there, only empty rooms and closets. There was a second story. I climbed the stairs. Something was pulling me up the stairs. Suddenly my entire body was lifted up into the air and pulled forward. I no longer had control of herself. Some unseen power had engulfed me. I couldn’t lift my hand. I couldn’t utter a word. I wanted to scream;needed to scream. It was a lonely, terrifying, dark and empty place. I continued rising higher and higher until I was almost at the ceiling. I thought of Shane. Where was Shane? He would help me. How could I tell him I needed help? Then l was awake. Shane was beside me, starting to wake from his own slumber. It was 5:00 am, time for him to get up for work. I snuggled up to him and tried to push back the awful darkness that had just been in my dream. I was trembling. He held me close and I proceeded to tell him about the dream.
"It was just a dream." Shane soothed. "It was just a dream."
I would have this dream again. As Shane finally got up to shower, I lay in bed afraid to face another day.

******************************************
I was tired after a long drive and now found myself sitting in another waiting room. This one I liked even less than the last one with orange chairs and a computer generated voice echoing through my head. At least here there was no floating ‘voice’, just the receptionist behind the glass window calling my name. As I glanced up at the sound of my name, I noticed the other people in the waiting room. They were all quite a bit older than me. They all looked miserable. They were looking at me. One or two looked away as soon as I got up. Others unabashedly stared as I moved toward the window.

They were probably thinking, "She’s too young to be here".
"That’s right", I thought. "I am too young to be in a neurology clinic for Parkinson’s. Old people get this disease, not me."
I wanted to scream out to everyone in the building, "I am not old. I shouldn’t be here. Quit looking at me!"
Instead I turned to the woman seated inside the window. She wanted my card; that precious blue card that every doctor’s office receptionist needs in order to speak to you. Without the blue card you were a nobody. Not in the computer. Sorry. It irked me that I was only identified here by this card. Soon a nurse opened the door and I heard my name again. This nurse had to read my name from the chart as she called it out into the waiting room. Would they ever look at me and know who I am by my face, instead of my disease? It was as though these women were conditioned to act as if the people they served, patients, were not real people anymore since they now were abnormal. They had a disease; parkinson’s. They should be treated differently. The impulse to scream came into my throat again. I followed the nurse through the maze of small hallways back into the far recesses of the doctor’s cave. It felt like a cave. The hallways and rooms were small. There were no outside windows. The nurse left me alone in the small cubicle of a room, waiting. I read and reread the papers attached to the walls; reports, studies, newspaper articles, humorous stories, medical forms and brochures. I had read these before. There was nothing new. After a few eternity filled minutes the great ‘doctor’ arrived. In she came and said hello to me.
I tried very hard to like this doctor. She was the ‘head of neurology’ at this movement disorder clinic. She was important. She initially spent a long while with me explaining what was wrong with me and how I could deal with it. Now, however, I felt like this doctor, another woman, was my greatest stumbling block.
I was never one to accept at face value what any doctor told me. I wanted to know why and how. The many doctors I had seen in my adult years were often irritated because I asked so many questions. I studied things on my own and then I would ask them about it. They didn’t want to listen. They just wanted to be in charge and make me listen to them; the ‘doctor’. It was insane to me to accept that a forty two year-old mother of four would be stricken with a serious neurological disease. There was a reason and I wanted to find it. I hated that anyone accepted illness and made themselves as comfortable as possible but did nothing for the root problem.
I had been searching desperately for an answer to my recovery; an answer to this mystery, this hell that had seized me. It drove me to the point of inward hysterical anger that this doctor now sat before me calmly reading what she had written four months ago in my chart; her own important findings. Bla bla bla………. She then proceeded to do her tests on my muscle reflexes and ability to move in specific ways. She talked about my medication next. Then she got to the subject that I had been waiting for; the supplement I had been taking.
Even with the carefully prescribed medication, I was going downhill in respect to being able to move and function on my own. It had only been a year since I began the medication. Initially it had helped but now that help was fading fast. I would not accept this ‘disease’. I had a family who needed me; a four year old daughter, for crying out loud, who needed me. I had a husband who was not handling my illness well. I needed to find an answer now. And here sat this ‘specialist’ looking at me with condescension in her eyes; or so I thought.
Now the doctor droned on looking at my chart and drumming her fingers on the desk while she spoke her mind. The doctor proceeded to tell me that she felt I was being duped by people that wanted my money. The supplement would do nothing for parkinsons. In fact, I needed to accept the fact that there was nothing that would ever cure me, nothing……..
Fury filled my conscious being. I heard little else. I left as quickly as I could. I knew the doctor was wrong and I would prove it, somehow. Angry determination was now my encouraging friend. It would drive me to more answers, more healing. God had not taken me home yet. I must have more to do for him; more to learn. I was going to get well. But how? That was the question?



7 years later, I still have PD, still take medication, still have down and bad days. But...... I have many more good days and have progressed dramatically in my ability to move and function like anyone else. I have traveled- searching, studied, and worked hard at healing. It's happening a little at a time. My Dad told me this would happen. On most days I can play the piano, dance and move freely. I don't suffer from depression anymore. I have learned many valuable lessons that are deeply rooted in my heart. Call it the 'school of hard knocks'!





Priceless Soul
I began as everyone; a babe on planet earth.
Growing into childhood I felt no beauty or worth.
My soul tired, soon mournful and lost.
Where was love for me? To find it, what would be the cost?
The cost was great; many soul lessons learned.
Love found a way to me; a happy heart and peace were earned.
All God’s children are so precious and needed.
Understanding comes when love and forgiveness are heeded.
Joy is full as new souls begin here.
That precious person embraced in a loving sphere.
Mankind will endure amidst conflict and pain
Because pure love is light and our light is within.


by Tracy Anne Budge

Monday, July 20, 2009

Life with Parkinson's Post #16 An Enlightened Mind

A friend on my Parkinson's Forum shared this with the group and I wanted to pass it along. It's one of the most beautiful things I have ever read; it is complete enlightenment and purity, a goal we all should prepare to find.................


To an English Friend in Africa-

Be grateful for freedom
To see other dreams.
Bless your loneliness as much as you drank
Of your former companionships.
All that you are experiencing now
Will become moods of future joys
So bless it all.
Do not think your ways superior
To another's
Do not venture to judge
But see things with fresh and open eyes
Do not condemn
But praise what you can
And when you can't be silent.

Time is now a gift for you
A gift of freedom
To think and remember and understand
That ever perplexing past
And to re-create yourself anew
In order to transform time.


Live while you are alive.
Learn the ways of wisdom and silence
Learn to act, learn a new speech
Learn to be what you are in the seed of your spirit
Learn to free yourself from all things that have moulded you
And which limit your secret and undiscovered road


Remember that all things which happen
To you are raw materials
Endlessly fertile
Endlessly yielding of thoughts that could change
Your life and go on doing forever.

Never forget to pray and be thankful
For all the things good or bad on the rich road;
For everything is changeable
So long as you live while you are alive.

Fear not but be full of light and love
Fear not but be alert and receptive
Fear not but act decisively when you should
Fear not but know when to stop
Fear not for you are loved by me
Fear not for death is not the real terror
But life - magically - is.

Be joyful in your silence
Be strong in your patience
Do not try to wrestle with the universe
But be sometimes like water or air
Sometimes like fire

Live slowly, think slowly, for time is a mystery
Never forget that love
Requires that you be
The greatest person you are capable of being
Self generating and strong and gentle
Your own hero and star.

Love demands the best in us
To always and in time overcome the worst
And lowest in our souls
Love the world wisely.

It is love alone that is the greatest weapon
And the deepest and hardest secret

So fear not, my friend
The darkness is gentler than you think.
Be grateful for the manifold
Dreams of creation
And the many ways of unnumbered peoples
.

Be grateful for life as you live it
And may a wonderful light
Always guide you on the unfolding road.


March 1991
Ben Okri

Sunday, July 19, 2009

Life with Parkinson's Post #15 My Changing World/Pictures don't lie

I have wanted for some time now to show you just how my life has changed over the last 8 years. I went from robust, fairly energetic to completely nonfuncioning, thin, etc. As I found more things to help me over the years I regained some of my robust look. It has been some journey and it's not over yet. But it makes me so grateful for what I have as I look back on these pictures.




This was taken the day Tracy (my husband is named Tracy also for those who don't know that)
shaved off his beard of 11 years! What a hunk!


Memorial Day 2008


July 2008 I was on prednazone and my face was so poofy!

During a thin phase in early 2007, on a bus to Oakland with church members.


March 2008. I was feeling very stable at this point. Went dancing quite a bit.



December 31, 2008 just before our New Years Eve dance performance.


2 years ago at a USO dinner/dance fundraiser. We were 2nd runner up in the dance contest.


Taken in 2000 at a church Valentine's dance. 2 years before any symptoms of PD.


Taken October 2006. Notice the weight change. I wasn't dieting...haha


Taken the same year- 2006. I was either swollen up or gaunt. Chemicals. I didn't have it figured out yet. I couldn't wear any hairspray or makeup. Soon after this picture I found some that didn't make me swell.

Taken the previous year 2005.


The family shot. I treasure this picture even if I don't have makeup on.

Now we are getting to the beginning before I was on medication and/or found any help.


My left arm is hanging, useless. I could barely stand up straight and smile. My extended family thought I had come to say goodbye before I died. I kind of did. But as you see, I am still kicking.
This was taken in Utah at our annual Memorial Day Breakfast.

Again, in this Christmas picture, my face is a mask and I think I look like a skeleton. My husband quieted my left arm movement.

Saturday, July 18, 2009

Life with Parkinson's Post #14 -Goodbye Kaia

Well, our visit with Kaia has come to an end for now. She will be in the air to N. Carolina at 7 am tomorrow morning. I thought I would share some more pictures to send her off with. She has grown into a beautiful young woman. She is fun loving, humorous, easy to please, patient with Ariana, a good friend and a good daughter. We'll miss you Kaia. And we miss you this year Taz.

As I contemplated the following moments, I realized that Parkinson's has not been foremost in my mind this week. I had a fairly normal week. Or maybe it is just because I'm learning not to blame every bad moment on PD or on my pain. I love being able to capture life's moments because I don't remember them very long. I am indebted to my husband for making sure I have a camera and a computer. It is my lifeline to my life- sounds weird.



To all my PD forum friends, thank you for being who you are and sharing with me. You just never know what gift life will bestow. You are God's gift to me to keep me going a little while longer. Never give up.



Now, pictures-

Ariana doing her favorite trick off the board. A 'plug the nose, feet first' plunge. This is our neighbor's pool who so kindly offered it for our use while she was away for a week. Thank you Patti!

The human, floating, pretsel !


A face only a mother can love.............


She never stops posing or laughing.


After a hot, hard day of fun, she fell asleep with Cleo.



A reminder that our handsome Cody is hanging around. I'm glad! He came over whenever I called him.


Kaia modeling the dress I made her while she was here.


My sweetheart enjoying one last moment at Seacliffe.


Kaia looks so much like Tracy. She's as tall as I am now.


Seagulls in flight just over my head as we were leaving Seacliffe.


I managed to capture the snout of this sea lion not too far out from shore. He was playing.


If you look real hard you can see a tiny dot in the middle of the horizon in this picture. It is a boat. I reminds me that even though our lives may not be perfect there is always something waiting on the horizons of tomorrow.

Our tradition picture at Seacliffe. This is the third one I've taken of Tracy and Ariana with the concrete boat in the background. I tried to put the first one on this post but the computer would not recognize it. Ariana came up to Tracy's elbow.



I took this one last year. Look how much she has grown!



Two of our four beautiful daughters. They had fun together.

We got together for a group shot and this was a test picture. Of course, Cody is making it interesting.

What a beauty! She's going to be a Jr in HS this year. She is going to be on the color guard squad for the 2nd year, performing with a rifle. She says her school has the best marching band in her state and they will go to Nationals this year!

Here is the real deal. A group picture is always great but we missed the rest of you. Have the rest of a great summer everyone.

Love and hugs!

Friday, July 17, 2009

Summer With Ariana Part 2




Ariana and pal, Samantha Rich

Ariana kissing her rubber gecko....










Rabbit ears..
Cousins doin the Macarena and lookin hip!









































































Then swim, swim and swim some more.







































































Oh to be a kid again!