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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Tuesday, July 8, 2014

COMMUNICATION

Today, I want to talk to you about Parkinson's and how it can cause misunderstandings

There have been times, while talking to you, my voice may taper off to where you can barely hear me. I may talk fast and then loose my train of thought because I am slowly thinking of the right words to say. 
There are times, I look as if I am mad, raising my voice for you to hear, sounding stern. Yes, this my Parkinson's disease. These things are not an excuse.
It takes a lot to upset me, and if that occurs I will normally let it go, or talk to you in private.



Having God, friends and family in my life is my reason for living.


Please read the following:


      •  handwriting: Many people complain their writing becomes hard to read. It becomes small, cramped and ‘spidery’. Whilst writing starts out normally, it tends to reduce in size as the page progresses. This is known as Micrographia and is one of the earliest signs of Parkinson’s, caused by Tremor and lack of coordination

     •  speech: it may be slurred or become monotonous with limited variation or expression in the voice, as well as a lack of volume. Some people find that as they talk, their speech becomes faster and incomprehensible. Using the telephone and communicating in social situations where there is background noise or lots of people.  Occasionally people with Parkinson’s have difficulty thinking of the right words to express what they want to say. It may take longer for them to generate sentences and initiate quick remarks, which may make rapid conversation in group situations difficult.  This is known as Bradyphrenia.


      •  facial movement and body language: both can become slow or even diminished. Facial expressions, such as smiling or frowning, may become difficult to make. Body language often lacks spontaneity, and gestures, such as nodding, may be missing. By contrast, abnormal involuntary movements - known as Dyskinesia - may make it difficult to control the face and mouth sufficiently to speak or otherwise communicate. 




  • Parkinson’s can cause a number of communication difficulties: speech, facial expressions, handwriting and  body language are affected in many people. This obviously has a profound impact on how a person with Parkinson's interacts with everyone from family members to complete strangers.

  •       The ways in which Parkinson’s can cause communication difficulties include:These difficulties can impact considerably on quality of life and can contribute to a very misleading picture of the affected person, resulting in assumptions being made about them - often which are erroneous and very distressing. 

  • For example, people may assume that, rather than having Parkinson's, the person is drunk or unintelligent1. Moreover, the ability to communicate may fluctuate during the day, depending on the medication schedule and whether the individual is ‘on’ or ‘off’. Such fluctuations can be very confusing to others.


  • A lack of self-expression can dent your confidence to interact with others. In some people, this could lead to Depression, so it is important that family and friends are aware of your difficulties and encourage you to continue socialising.

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