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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Friday, May 9, 2014

WHAT NOT TO SAY





Do you know what Parkinson's disease look like? It is different for everyone who has it. Some may shake uncontrollably all the time, while others shake less, but have terrible back and/or shoulder and neck pain. Some can smell the slightest fragrance, while others bemoan the fact that their sense of smell has disappeared completely. Some sing to strengthen their faltering voice, while others can still yell up a storm. Some have a difficult time with walking – others run marathons.
However, most people don’t and most likely won’t ‘see’ these things: You won’t see the restless legs that keep a person with PD awake half the night, pacing the floor to get it to stop. You may miss seeing when they fall, due to being off balance, bruising their arms or legs. You won’t see them struggle while getting dressed because their fingers are cramping.  You won't see the pain they live with day in and day out or the muscles in their body that seize up and cause their toes to curl under or cramps throughout their body as if their muscles are twisting together like they were a wet wash cloth being rung out. You won't see them freeze as if their feet are glued to the floor. You won't see them struggle to take their pills because their throat muscles are quitting to work properly, Or someone having muscle spasms of the throat.  Some people choke at every meal.
You won’t see a lot symptoms even if they are visible, because you may not really understand the disease or know what to look for. But, the Parkinson's person is fully aware of what is going on inside of them. 
I can't smell, I don't shake much, at times I need help with getting dressed. My voice gets softer and softer as the day goes by. I am in pain always. I have curling toes and cramping feet and legs. Yes, it feels like a wet wash cloth being rung out.  I sometimes get cramps in my hand and fingers making them useless and painful for sometime.  I struggle at times moving when getting up from sitting.  Some nights I am unable to sleep, but I stay awake during the day, hoping I will sleep the following night.
I can stay in bed and feel sorry for myself, but life is getting shorter and shorter and I want to live. I watch and see the ducks in the pond and the turtles' heads pop out before climbing up the water's edge. Oh how lovely life is. I care about people and want to shout out. I am alive  and I will fight this disease because I have a family and friends and things to attend. 
 I thank God that I am still here. 


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