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, May 1, 2014

You and Safety


1. Do not use throw rugs unless they are taped down or have a good rubber backing gripping the floor.
2. Have night lights in all rooms, so you are able to see at night.
3. Have a safety bar in your shower, so that you can hold onto it .
4. Possible seat for shower or bath.
5. A safety bar by the toilet helps to lift yourself up.
5. Have a fire extinguisher near the stove if needed.
6. Have a list of all your medicines, health history etc. on the refrigerator.
7. Write down the following:
    Your Name
    Address
    Phone Number
    Date of Birth
    Doctors Names and Phone Numbers
    Family's Names

It is important to have this list by the phone. 

Often  during an emergency and you call 911, you can not think correctly, that is why it is so important to have the is information by the phone.

Other safety issues:

Getting up out of your chair may be a challenge but try to slide your butt up closer and closer to the edge, rest a moment and then push yourself up by the arms of your chair. You may have a walker to hold onto or a cane. Never be shy to ask for assistance.

Trying to avoid falling:

When getting dressed, it is safer to sit down and put one leg into the pants and then the other  before standing.  This also holds true to socks and shoes. Trying to stand on one foot can be a disaster since our balance gives us problems.

Constipation:

This is common for many of us. Using flaxseed (ground) in your foods daily helps. Eating prunes, raisins, and dates daily seems to work for some and of course eating fiber.
Occasional a laxative to help but if this becomes a problem, please call your doctor.

If you wear a diaper:

Sometimes you may develop a rash: Try cleaning the area with a wet wipe/baby wipes and then use some Desitin Cream on the area.  If this continues without relief call your doctor.
For women, wearing a diaper ( with the constant humidity in your genital area) you may develop a yeast infection~ please be aware of this).

Exercise:       First check with your doctor  !!!!

Very important, even if you can only move a little, exercise . I have seen people in wheel chairs, move their arms back & forth, their heads and necks, and some can move their feet to the beat of music.

Get a little Sunshine if you can~ it helps and makes your depression lesson.

Make your voice stronger:

By singing from deep down in your lower stomach. You can even hold your hand on your stomach and try to yell having the sound come from deep down. This also helps to open your lungs helping you breathe better, I have been told.

These are things that I have asked of other PD people as well as myself.  Always check with your doctor to make sure it is alright for you.





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