Introduce Yourself!

Re: Happy to be a Quilting Newbie

gini — Fri, 14 Dec 2012 05:10:47 GMT

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

Re: Happy to be a Quilting Newbie

Kris — Thu, 13 Dec 2012 03:47:56 GMT

Welcome Kristin,

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

Re: Happy to be a Quilting Newbie

Angele — Thu, 13 Dec 2012 02:27:45 GMT

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.

Re: Happy to be a Quilting Newbie

Kristin (KAlbrecht) — Thu, 13 Dec 2012 02:01:44 GMT

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.

Re: Happy to be a Quilting Newbie

Kristin (KAlbrecht) — Thu, 13 Dec 2012 01:08:33 GMT

That would be great! I consider Minnesota my REAL home . . . I consider Illinois just a temporary place to live (although we've been here for 20+ years).

Re: Happy to be a Quilting Newbie

Thea — Wed, 12 Dec 2012 15:11:23 GMT

Also, maybe in a couple years when I am living in MN all the time we can have some fun together. We are planning on moving to Appleton in 2014/5 to live near my son and grand kids. I can't wait to get there to be near them - now this cold weather is a turn off but we are going to make sure our house is well insulated and has a great furnace for me in the winter so I will be toasty warm... so no worries from me - the ability to live near my family will outweigh any shortcomings with the weather for me.

Re: Happy to be a Quilting Newbie

Thea — Wed, 12 Dec 2012 15:08:55 GMT

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.

Re: Happy to be a Quilting Newbie

Marie — Mon, 03 Dec 2012 19:52:39 GMT

Hi Kristin, welcome to our wonderful family. Prayers going up that all goes well for you. In the meantime we are here to support you in any way we can. God Bless. (((((HUGS)))))

Re: Happy to be a Quilting Newbie

Spudgrandma — Sun, 02 Dec 2012 19:50:32 GMT

Thank you for the info on Parkinson's Kristin, it was very interesting. We have an uncle with this but from what you said he probably would not qualify for the surgery. Again, Thanks.

Re: Happy to be a Quilting Newbie

Kristin (KAlbrecht) — Sun, 02 Dec 2012 19:46:33 GMT

MNnancy:

Kristin, what an amazing story! I hadn't heard of DBS surgery. Do you know if everyone with Parkinson's can try this, or are there eligibility requirements that must be met to make someone a candidate for it. So glad you've had success!

Hi Nancy --

There are some restrictions to being able to have the surgery and insurance companies may balk it at if they consider it to be an elective surgery. I know in my case my doctors had to show documentation that my tremors could no longer be controlled via medicine, and that the tremors had robbed me of my quality of life. In my case the tremors had gotten so bad that I was going to have to go on permanent disability . . . I could not so much as brush my teeth or brush my hair. My DH was my life line.

The DBS surgery is far from a cure. When the device (a neurostimulator implanted in the brain) is turned off (I have to turn it off at night), the tremors are back with a vengence. But when the device is turned on . . . NO TREMORS. I can walk again . . . I can feed myself again . . . I can use my hands again . . . I have a life again! :D

It took about 3 months for all the testing and the doctors visits before I actually got the medical OK to have the surgery. Not only physical tests, but also psychological testing . . . they want to make sure that you're mentally capable of having an implant in your brain and capable of performing the maintenance that goes along with it. And how long it lasts is greatly determined by how frequently the device power has to be turned up. In my case, I have four wires on each side of the brain, positioned in the area of the brain where they determined the tremors to be originating from (another set of tests). Those wires are connected to a pace-maker like device in my chest (if you already have a pacemaker for the heart, you will not be able to have the DBS surgery). Of the four wires, only one is turned on on each side . . . and even then it's only turned on to 60% power. I have the potential to turn on all four wires eventually, up to 90% power on each wire (there may be side effects of a wire being turned on which will prevent that wire from being turned on) to control the tremors. I have had to turn up the power twice already this year on the wires that are turned on but I am far from being maxed out on the benefit of the device. My doctors tell me I will probably get 10 years out of the device before my tremors are uncontrollable again. That's not long, but I'll take anything I can get!

Sorry for the long winded story . . . I hope you can find similar benefit through DBS surgery . . . it saved my life (I was suicidal the last 18 months before surgery because I had no life). If you decide to pursue the surgery and have the means, I strongly recommend that you do some due diligent research to find a good neurologist and neurosurgeon . . . they are, after all, working on your brain. And even then, not all neurosurgeons are doing the surgery. I myself went through Central Dupage Hospital in Winfield, IL but I know that the Mayo clinic in Rochester is also performing the surgery.

On another note, I see you're from Minnesota. I am a true Minnesotan born and bred. I grew up in Minnetonka but my true love is for the north . . . I went to college in Bemidji and my husband and I spend our summers in Northern Minnesota visiting friends or just drowing worms (fishing) . . . Pine River, Alexandria, Brainerd, Fergus Falls, just to mention a few.

Thank you for putting up with my long winded story. If you want more information on DBS please feel free to contact me.

Re: Happy to be a Quilting Newbie

Thea — Sun, 02 Dec 2012 16:05:41 GMT

Kristin, I am so happy to meet you! Such a survivor. I am ecstatic that they have found a partial cure for parkinson's. It is such a debilitating disease. I am also very happy that you are a survivor and have found quilting. It is my joy to have it in my life too. I would love to see what you have made - even though you say it isn't show worthy. I don't believe any of my quilts are either but they are made with one special ingredient. My love. Happy - so happy to have you on board.

Re: Happy to be a Quilting Newbie

Patti — Sun, 02 Dec 2012 14:00:19 GMT

Welcome Kristin. Glad the surgeries were successful, and glad you have joined us.

Re: Happy to be a Quilting Newbie

weezee56 — Sun, 02 Dec 2012 06:07:29 GMT

Hi Kristin, So happy to hear you are feeling so much better after your surgery. I'm not that good at quilting but, I still enjoy trying. Good luck to you in everything you decide to try. Welcome to QCA, so glad to have you with us.

Re: Happy to be a Quilting Newbie

Barbara — Sun, 02 Dec 2012 05:25:26 GMT

Kristin, what an amazing story ,I'm so thrilled your surgeries were successful and you are now able to be human again. Welcome to the club. you will love it here .

Re: Happy to be a Quilting Newbie

MNnancy — Sun, 02 Dec 2012 02:08:01 GMT

Kristin, what an amazing story! I hadn't heard of DBS surgery. Do you know if everyone with Parkinson's can try this, or are there eligibility requirements that must be met to make someone a candidate for it. So glad you've had success!