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Hey Thea --

You are too kind.  Thank you for the encouragement and warm thoughts.  I am so blessed to have joined the quilting community.  I have found so many friends, and hours of happiness (even during the time that I have to spend un-sewing) ....... I am particularly grateful for the friends, discussion, and ideas I have found through QCA.  Thank you to you, and all my new friends here on QCA!!!

Why do I need to turn off the neurostimlator at night.  I guess the best way to describe it is, it's kind of like taking antibiotics for a very long time.  Eventually your body will develop a tolerance for the medicine.  The neurostimulator is much the same way.  Instead of a pharmaceutical though, in the case of the neurostimulator it's the electrical current that the brain can develop a tolerance for.  By turning it off at night, it (hopefully) will prevent (or at least slow) the brain from developing a tolerance to the signals.

I personally have two sets of wires implanted . . . powered by two separate neurostimulators.  The wires are places in the Thalamus . . . The area of the brain that controls movement.  I expect to have two more sets of wires (for a total of four eventually) implanted in the next year . . . placed at the substantia nigra . . . a very small area of the brain just between the thalamus and the brain stem . . . it also plays a part in movement but also primarily handles motor skills (fine movement) and other muscle type symptoms.

I do have other symptoms of Parkinson's besides the tremors but the tremors were by far the worst.  We decided (the doctors decided) it would be more beneficial to me to handle the tremors first . . . I agree.  Some of the other symptoms of Parkinson's that I have can be embarrassing but can be "handled" through other methods.

I know they can use the same technology for other brain diseases such as epilepsy, major depressive disorder, and many sources of pain.  I know it's scary to think about having an implant in your brain . . . I was a basket case for the first surgery.  But six weeks after the first surgery we turned on the device.  I was so happy to see the tremors gone, and being able to hold a cup, that I determined the anxiety for surgery was well worth it.  If you have a need and chance to have a similar surgery, I strongly recommend that you seriously consider going forward with the surgery.

I have a new life.  I look back at this time last year and realize how lucky I am to be able to get the help I needed.  A year ago I couldn't do ANYTHING that involved my hands . . . today I can do anything I want . . . and I chose to unbury my sewing machine that I had when I was a teenager and try quilting.  I've since bought a new machine because of the hours of fun I am having with this craft.

If anybody out there needs to talk about a similar experience, please feel free to contact me.  I am happy to share my story and experiences if it means that another person in a situation similar to mine gets the relief that I have experienced.

Besides dealing with Parkinson's Disease, I am also a cancer survivor.  I've had two breast cancer diagnosis and uterine cancer.  I'm not telling you all this for sympathy . . . I don't want sympathy . . . more important to me is to be able to share my story with others in the hope that I can help another person.  I honestly believe that I have been served the challenges of cancer and Parkinson's so that I can help somebody else to overcome or fight a life changing diagnosis.

Thanks to everybody on QCA for the warm welcome, encouraging words, and the opportunity to have fun.

May God bless you and your family with the grace of love and peace.  Have a Merry Christmas and a Happy New Year.

Thea:

Kristin - each time I read your story I am more amazed.  They had talked me about a similar procedure to take care of my pain from my RA but I was afraid when they told me they could not give me a guarantee that the device would stem anymore then 50% of my pain - for your tremors though it sounds like a wonderful work.  May I ask why you have to turn it off at night and have the tremors continue  - is it because you are sleeping and they don't want it on when you are asleep for some reason.  I know when they talked to me about the similar device I didn't get any understanding that I would have to turn it off...

I am truly so happy for you!  The new technology they have come out with over the years to make lives better is so fantastic and I am so grateful that you were able to have this.  I am truly blessed to have met you here on QCA and I truly hope to get to know you better via Mail Box Surprises this next year.  It is wonderful isn't it to live in the 21st century.  

We here at QCA are blessed that you didn't go through with that suicidal impulse and I thank the Lord for finding an answer and making it available to you!  I hope and pray that you have a wonderful Christmas season and a better 2013 for you and your family.

Kristin Lee WICKMAN Albrecht  

(I'm a WICKMAN . . . Don't let anybody tell you any different)

 

 

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Angele replied on Wed, Dec 12 2012 8:27 PM

Kristin, welcome to QCA.  Wow!  You are a miracle of science.  My aunt suffered from Parkinson's.  it is a terrible disease!  To be able to use your hands and feet and legs to do all you want is totally amazing!  You are truly blessed.  I hope you enjoy your friends here and all the things you will learn.  I know you thought me lots already about things I was not aware of.  

Angèle  from NWO

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Kris replied on Wed, Dec 12 2012 9:47 PM

Welcome Kristin,

I'm happy you're able to join us in this wonderful world of quilting. All the best to you.

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gini replied on Thu, Dec 13 2012 11:10 PM

hi krisin, welcome to the quilting world, what an inspiring life you have. 

gini in north idaho

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