About me


As far as I can remember, I have always been athletic. To find out that I had Parkinson's Disease in 2004, was a total surprise! I had to learn everything that I could about this disease. I read everything and went to many seminars and have and still do participate in Clinical Trials. After reviewing my medical records it was determined that I had tremors in 1987, at age 38 years old. I can no longer smell, I drag my left legs often. I loose my balance but I do enjoy dancing. If I fall, I get right back up.

Many things happen to a person with Parkinson's dsease. As of this date, there is no cure, just medicine and/or DBS to help. I can not have DBS because of the damage done from my previous stroke in the area where the surgery would take place. I am getting ahead of myself.

Then came the major stroke in 2004, after my Parkinson's disease diagnosis. How could this happen? Paralyzed on my left side. I had to learn how to speak, chew and swallow foods, regain all movements on my left side including using my hand and fingers to pick up things, legs and feet to move, stand, learn balance and walking., rebuild the muscles. I won't get into that. It took a year of 3 to 4 hours each day of all kinds of therapies. I had a blood clot in a vein burst in my brain. I thank God that I was able to get back to 99% of me.

I have had 4 major surgeries for female problems, beginning in 1981 and so far no more since 2009. In 2010, we ( My husband and I) purchased a motor coach and traveled over the US spreading the word about Parkinson's disease and passing out brochures We no longer have the motor coach.

When I was diagnosed with Dystonia of the feet and calves, I thought ok, I have had enough. Surely, nothing else will happen.

But I was wrong, more would come. I lost the bone in my lower jaw and ended up with cadaver bone, implants, and gums, and snap in lower dentures. I have had 6 other surgeries adding more bone and gum. I also have been dignosed with temors of my voice box, .

Through all of this, I continue to feel totally BLESSED! I Thank God for helping me. Of course I have pity me times, and say, Why Me, Lord? I am human, but most of the time when this happens, I look in the mirror and say, Why Not Me? I am a fighter and I will continue to fight this disease called Parkinson's Disease. I continue to exercise and meditate.

I use to be so shy. Now I give Seminars on Parkinson's Disease Awareness. I also began writing poetry, I hope you enjoy it.

God Bless,

Margie

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Thursday, June 30, 2016

Sometimes all we have to do is try.



Have you ever tried to grab something up high, and yet you couldn't
It is better to have tried, than just  sit and decide you shouldn't

Have you ever looked out of your window and saw people doing things you wish you could do
You have tried so many times and are unable to do those things, so you just sit and stew.

You may not be able to do all of the things others can do, but don't feel blue
Walk outside and talk to them, they just may want to talk to you too.

There are times we do things and realized no matter what, we can no longer do
But if we try our best, that's all anyone should ask of me or you.

So be happy about the things you did, you were able to finish
Believe in yourself and your achievements will never diminish

Life is all around us, do we just sit inside and stare
Wouldn't you rather be outside, and look inside to see an empty chair.

Saturday, June 25, 2016

Being slow is no excuse.



I may move slow, but I will continue to move this old wobbly body of mine
If I have somewhere to go, no matter what, I am always running behind
I begin getting ready, but I have to sit, for awhile
Upon finishing, I look into the mirror, and give myself a great big smile.

Wow, I have accomplished my task having plenty of time
As I shuffle to the garage and got into the car for hubby to drive
He said we have plenty of time what shall we do
Let's just drive around, since we don't have a clue

The time is near, so we arrived at Sam and Jan's home
No one answered the door, we felt all alone
We checked our I-phones and there were no messages
We walked around back and no one was on the premises.

I looked at my I-phone, and read the invitation
All is correct, I could see my hubby's frustration
He called Sam to see what has happened
They pulled up in the driveway, they had to picked up aspirin
He said you are normally running late.
We thought we had time, I am sorry you had to wait.

How often have Sam and Jan had to wait because of me.
By being late, I blamed it on my Parkinson's disease
They never complained or abandoned me, I actually see
Learning from my selfish act, Parkinson's was winning
I realized that my daily routine was just the beginning
I am on time for everything now, and I won't be defeated.

We should treat everyone, the way we want to be treated.

Tuesday, June 21, 2016

Life Has Knocked Me Down


I have been knocked down, many times in my life
Through the Lord,  I know I will be alright.
I can still hear my Mom's voice, saying get up and move
I listen to the voice, and know that I will improve
But if I give up and do nothing with my body and mind
Then I would be selfish to God, and my love ones, left behind

I have this will power that does all that is possible
I realize that life is short, I am unstoppable.
Often, having  to repeat my words and still it was inaudible.
With my continuous practice, now my clear voice is possible.

Each day upon rising, my body is stiff and I am weary
But with medicine, exercise and faith, I move and think clearly.

I have fallen many times but able to get up, sometimes with assistance
While people stared and whispered, keeping their distance
Some people may think that I probably had too many drinks
I just continue shuffling, not worrying what others may think

I have my 10 pound maltese service dog with me
He assists me, when I have an emergency or freeze
Some people question, whether he is a true service dog
If I didn't need him, would I make him walk along?

I have my MDS doctors prescription for him as well as his certification
They don't care what he does, being small is apparently their fixation
I explain,  since I am unable to smell, because of loss of dopamine in my brain
He saved me from an electrical fire in my iron, before it burst into flames.

Yes, I have things wrong with me, as many do
I will continue to get up and will not be blue.


SaveSave

Monday, June 20, 2016

Chippy and Me




Chippy and I went through the flower field to go on a picnic.
As we were sitting down and eating, we heard a clickety-click
Chippy said to be quiet, here comes the Parkinson's man
Chippy was shaking as if it were the boogieman.

When I saw the Parkinson's man, I said Hello Sam
Sam responded saying, hello Maryanne.
Chippy looked at me, saying weren't you afraid.
Sam is a friend, when I fell, he gave me first-aid
But, he has Parkinson's, feeling ill at ease
Oh, Chippy, No one can catch Parkinson's disease.

But Sam shakes and shuffles and he doesn't even smile
I said, Sam can't help it, do you want him to be exiled?
Chippy said no, but he is so different than you or me.
Really, we are talking chipmunks, can't you see?

Saturday, June 18, 2016

Playing Hop-scotch






There are times, my mind says I can play
Playing Hopscotch, my body started out ok
I went up in the air, just as I began to hop
I remember coming down hard and everything stopped.

I looked up and my grandkids were scared

My hubby helped me up into my wheelchair
He said, I'll be right back so just stay there.
I sat saying a silent prayer.

What is wrong, where did everyone go?
All of a sudden I felt something flow
I was bleeding, at first I didn't know
My hubby is now by my side applying pressure
To the back of my head, as I was now placed on a stretcher
Yes, I am on my way, by ambulance to be safe. 
I remember saying, this is not an emergency, so don't race.


I had a concussion and some sutures in my head
I remember what the doctor had said
I have to be here for 24 hours or longer, to be safe
I was fortunate that my bones did not brake
So don't do this again, he said, for heaven's sake

As I lay here wondering when I get home
Should I stop and purchase some foam
To pad myself, when I try to skate
Or am I just pushing my fate.


(This has not happened to me, it is make believe)

Monday, June 13, 2016

Try to be happy and smile




There are times I get upset and really feel down,
Not wanting to feel aggravated to just sit and frown
Instead, I do all I can, to overcome those blues
Times like these, I like relax and defuse

When it is stormy outside, 

On my computer, I like to play word games
It can be challenging, working my brain
It helps me feel better, everytime it rains.

I enjoy a show that is full of comedy
Or contagious laughing may possibly
Make me feel better, or listening to a song
Hopefully, I could sing or dance along

I truly like to think positive and smile
I do all I can, because that's my style.
Living life to the fullest, is all worthwhile.
Watch this video, I hope you will smile.



https://youtu.be/y3yRv5Jg5TI

Tuesday, June 7, 2016

My Voice





I was singing in a Chorus Group and after awhile
I could not keep up with the verses, am I going senile?
I began loosing my voice, even when singing at home
It is just another Parkinson's syndrome.

I enjoy singing, even if it comes out squeaky
If I sing at home, my hubby and dog, Spencer, are sneaky 
They leave immediately, that is being a meanie.

I decided to get some help to improve, 
No one in the area does LSVT, and I can't move
I work from my LSVT (DVD) the best I can do

I practice when I am alone, my voice is improving
But it will take more time, so I will continue doing
What I can do to assert myself, is to continue practicing
I may not be able to sing in a chorus, but it's better than rambling

No more slurring or rambling of words when speaking
So I don't have to keep repeating and repeating.

Monday, June 6, 2016

Let's Keep that Torch Lit in Memory Of Muhammad Ali and Other's Fighting PD

This is a sample of the things that Muhammad Ali did for People with Parkinson's Disease




In memory of Muhammad Ali,  with his shaking hands raising the torch and lit the Olympic Flame to Open the Olympic Games in Atlanta in 1996.


Yes Ali,  you showed courage and pride, letting the world to see what Parkinson's disease did to a person, not Just any person but the Champ! Muhammad  Ali was not only a Three time Heavy Weight Champion and a Gold Medal Olympic Medal Winner, but a Great Humanitarian. Muhammad Ali's work earned him our Nation's highest Civilian Award, The Presidential Medal of Freedom, on November 9, 2005.

Lonnie Ali, Muhammad Ali and President George Bush


*Muhammad Ali signed a WHO petition to support a global initiative to find a cure for Parkinson’s in 2003, with Dr. Mark Stacy holding the document. 


*In 1997 the champion agreed to lend his name to the center, a part of the Barrow Neurological Institute. 

"At the dedication ceremony, I asked Mrs. Ali what we could do for them, and she said, 'Muhammad wants you to take care of everyone, regardless of their ability to pay,' " Stacy remembers. 

That was a tall order. 
Stacy's colleagues told him it wouldn't work; it was just too expensive to give that much free care. 
It was impossible, they said. 
But we know what Ali said about impossible: "Impossible is not a fact. It's an opinion. Impossible is not a declaration. It's a dare. Impossible is potential. Impossible is temporary. Impossible is nothing."
Stacy's colleagues advised him not to even mention the idea to the hospital's leadership; it would just alienate them.
He ignored them. 

That's one of the gifts Muhammad gave me: the gift of courage," Stacy said. 
At a meeting of the hospital's highest executives, the doctor announced he wanted the center to treat people for free if they couldn't pay. 
He could read the room. They were skeptical. Parkinson's care is expensive. They didn't see how it would work. 

"I said, 'This is a Catholic hospital, founded on the principle of providing care to people regardless of their ability to pay,' " the doctor remembers. 
A nun who was in the room stood up.
"She said, 'That's exactly right,' " Stacy remembers. 
And the center started delivering free care to those who needed it -- dozens of people every year, Stacy said. 

Ali referred to those patients as "my people." 
And he took care of his people. 

When he did an advertising campaign for a shoe company, an executive asked whether there was anything they could do for him. 

*"'Give shoes to my people,'" Stacy remembers him saying. 
"Your people?" the executive asked. 
"My people in Phoenix," the champion answered. 
"That's more than a million people," the confused executive responded.
"No -- my people at the Muhammad Ali Center," he told him. 
The shoe company agreed, giving out two pairs of shoes a year to those who couldn't afford to pay for care. 

During one of his visits to the center, if Ali saw patients wearing those shoes, he'd give them a great big bear hug, Stacy remembers. 
Stacy, now a professor of neurology and vice dean for clinical research at Duke University School of Medicine, said his most touching memory of Ali is from an event at the center where patients lined up to meet the champion. 

"A grandmother in her late 50s or early 60s was walking through the line, and she said, 'Mr. Ali, thanks to you, I get to stay home and care for my grandson,' " he said. 
"She was at the end of the line, and he was getting tired, but as she was getting ready to walk past him, he pulled her back and gave her a hug, and the little grandson gave Muhammad a kiss on the cheek.

"It was one of the most precious moments I've ever seen," Stacy recalls, tearing up at the memory.
"When I woke up and heard the news that he'd passed away, I thought, 'I have so many happy memories with Muhammad and his family that I'll try to think of those,' " Stacy said. 
"But I have to admit that sharing some of these stories with you is difficult." 

'I want people to have the best of me'

Stacy said his friendship with Ali and his family gave him countless gifts. 
First, the champion was a living example for how to care for others. 
Because of Ali, the center committed to accepting patients regardless of their ability to pay. 
But then another problem cropped up: Some patients couldn't afford transportation to the center. 
"I told Muhammad that 'we can take care of them, but we can't always get them here,' " Stacy said. 

*The next year, Ali gave a "substantial donation" for cab fare. 
"I don't think it's right to tell you how much it was, but it was a lot of cab fare," he said.
And for Ali, taking care of people meant doing it right. 
One day in 2000, Stacy was driving his son and Ali's wife and son from Tucson to Phoenix for the annual Celebrity Fight Night, which raised money in Ali's name. 
The boys were playing in the back, and Ali's wife was taking a nap. It was just the two men, and Ali took out a pack of baseball-style cards that he would give away at the event. 
His Parkinson's had progressed to the point where he couldn't sign them quickly enough at the event, so he signed them in the car. 
Suddenly, Stacy saw Ali tear a card in half and throw it up in the air, the pieces landing between them. 
"I didn't say anything because, hey, he's Muhammad Ali. He's the heavyweight champion of the world," Stacy said. 

Then it happened again. This time, Ali reached over and touched Stacy on the arm. 
"'That one wasn't good enough. I want people to have the best of me,'" Stacy remembers Ali saying. 
"It was so simple, but it was a life-defining moment for me. From that day forward, I tried to live up to those standards."

*Another one of Ali's gifts Stacy will always treasure is the gift of mental toughness.
At the fundraiser that night, Stacy worried that Ali wouldn't be able to make it through the five-hour event. 
"At the end of the evening, he was exhausted, and I said to myself, 'Please, please, please don't ask him to come up on stage,' " he said. "But they did. And he would rally. When he stepped up on that stage, he became the heavyweight champion of the world again." 

*Where did Ali get his strength to work so hard as Parkinson's ravaged his body? How did he not fall victim to depression or frustration? Either one would have been understandable. 
Some of his strength came from his Muslim faith, Stacy said. But the rest is a mystery. 

"To be the heavyweight champion of the world, the greatest boxer of all time, you have to have something that we don't understand -- or certainly people like me don't understand," he said. "I was lucky to have known him."

Yes, Muhammad Ali, you gave us your all!   Thank you!

Sources: http://www.cnn.com/2016/06/06/health/muhammad-ali-parkinsons-stacy/
                          margiesjournal2.blogspot.com

Thursday, June 2, 2016

I Made it out of Bed today!




Some days it is a struggle just to get out of bed
But if I just lay, I might  as well be dead
I thank God for this inner voice that's in my head

Each morning, I thank Our Lord for giving me another day
I try to find joy in everything that comes my way
Just by moving this crooked body of mine is hard, I must say
But I manage to move myself even when my body wants to stay.

I do Tai Chi from videos on my computer and then I meditate
This helps me to maintain my balance and improves my heart rate.
Relaxing my limbs as I meditate, It's as if I rid myself of that added weight.

Joy is something I want to always display
Even when things may seem a little grey
Life is full of wonders to do and see
So thank you Lord for being with me.