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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Wednesday, July 16, 2014

The Patient and The Caregiver



The Patient:

 When feeling good or bad, it makes things seem better when someone shows they care.
Just by touching, no words need to be said. It is a wonderful feeling.I know that if I am really having a hard day, my husband will come up to me while I am resting and touch my hand lightly just to show me how much he cares. It is such a loving feeling, after all these years of marriage.

 I know no one wants this disease. It is just as hard mentally on our spouses and family members as it is on the person that has it.  It can also be hard on your caregiver physically.

 Sometimes we get caught up in ourselves, we forget to tell others how much they are appreciated.

 Remember to show your caregiver how thankful you are.  This could be a hug, a smile, or simple words to say thank you.
The Caregiver:

Support and Resources for Caregivers

As a caregiver it is sometimes difficult to let others help out or to take time out for yourself too.  However, the benefits of such choices often bring valuable results for both yourself and the person with Parkinson's.  Benefits can include revitalized energy, renewed interest in creative endeavors, new subjects to talk about and the realization that you and the person you are caring for are not alone.
Support Groups
For many people, support groups play an important role in the emotional well-being of both caregivers and people with Parkinson’s. Some groups are targeted towards caregivers, while others can provide a place to talk to people with similar experiences.
They can provide a caring environment for asking questions about Parkinson's, for sharing stories and advice, and for creating friendships with people who are in similar situations. 
PDF keeps a listing of nationwide Parkinson's support groups. To find one in your area, please call or email PDF at (800) 457-6676 or info@pdf.org. In addition to in-person support groups, many people also find online groups and listservs helpful.
Time to Yourself
For those who have family in the area, friends and family are often willing to help, but are unaware of your needs. With their help you can find time to yourself.   Consider making a list of things that others can do that may help you.  These may include things such as asking a friend or family member to stay for two to three hours with the person with Parkinson's while you go to the a store, or a movie, etc.  Perhaps request a family member to assist with tasks such as housecleaning or food preparation to give you free time or time away.   It may be difficult to get used to asking for help or even hiring help.  But remember that since caregiving is a role you are in and undoubtedly wish to do well, you will need to care for yourself in order to offer the most you can.

 Helpful sites: 

 A Family Caregiver’s Guide to Care Coordination 
http://www.nextstepincare.org/uploads/File/Guides/Care_Coordination/Care_Coordination.pdf








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