Sunday, December 26, 2010

Deep Brain Stimulation

I looked at Ken this morning and thought, oh my gosh, this is truly a miracle. His face was beautiful, so handsome, so young. He looks healthier today than he did five years ago, before he fell off his bike and broke his hip. We both looked at each other and thought, this marvelous, yet exhausting surgery he just went through may just have given us a brand new adventure in life.

For those of you who may not know, Ken has Parkinson's Disease. Parkinson's is a degenerative disease of the central nervous system that impairs motor function as well as brain function. There is no cure, but there are many medical and physical ways to fight off its constant advance.

Ken was diagnosed four years ago but he has challenged the disease every single step of the way. He has read everything about it. He knows all the dire predictions. But in the meantime he jumped into life like only Ken Kono can.

He decided he needed to keep his mind and body as healthy and active as possible. To take care of his mind, he began to study Chinese. He takes two classes every week without fail. He reads constantly and plays Chess every day. To help his voice, he sings in a Japanese chorus group and hosts the group here at our house every Saturday. He has real trouble walking because the Parkinson's keeps tugging at his Achilles tendons making it extremely painful to walk any distance. He knew he had to find something he could do that would still keep his hands and arms and legs as strong as possible. He decided to learn how to do massage therapy. He found a school where he could take classes and learn about the muscle system in the body. He went to class every day for nine months and graduated and then went on to become a board certified massage therapist. I am his best (and for now only) client. In addition to that, he exercises religiously every single day.

And then, on December 14 - eleven days ago, at the suggestion of his two neurologists he underwent an eight hour elective surgical procedure called Deep Brain Stimulation. This was a marathon undertaking for both Ken and his team of doctors. They bore holes through his skull on both sides of his head and implanted slender electrodes deep into the innermost part of his brain. They had to find just the right place in order to make this work, so Ken had to be awake while all this was happening. He doesn't quite remember all this, but believe me, the doctors told me he was awake and they found the right place.

The electrodes were then connected to wires that were threaded from his skull, down behind his left ear and into a small pacemaker like device implanted inside his chest. The doctors turned on the power while he was in surgery to make sure it all worked and reported that his tremor stopped, his hands unclenched and his feet relaxed. They then turned off the power and let Ken relax and heal for just one week before coming back to the hospital and turning on the stimulator for good.

Last Wednesday, three days before Christmas, we went back to the doctor's office and as promised, the doctor sat in front of a little computer screen that was hooked up to Ken's brain and did a whole lot of programming and then turned on the power. Ken said he felt just a little tingling in his leg. The doctor then gave us some very basic instructions on how to turn up and down the remote control and sent us on our way. He explained to us this process of getting the stimulator adjusted to just the right setting where Ken could greatly reduce his medication and still have maximum mobility could take up to nine months.

We left the doctor's office and found a little place to have lunch and celebrate. In the middle of lunch, Ken's leg began to jump uncontrollably. We were both quite unnerved by this and so later in the day after communicating with the doctor, we turned down the stimulator a bit and Ken returned to normal.

In the meantime, Ken feels great and looks great. We know we have a long way to go to get everything calibrated as it should and we (especially I) need patience. But for this old gal, it has been one truly miraculous Christmas.

Oh, what a great and wondrous adventure this life continues to be.



Sunday, December 19, 2010

Old Friends

From Left: Janice Feigley, Cathy Kramer, Billy Bryan, Jeff Wentz and Jim Miller. Oh what a time we had...

Thursday, December 16, 2010

Yumiko's Seal


Yumiko had her orchestra recital last night at Radnor High School. The program was marvelous - strings and trumpets and Christmas Carols. I was all in tears. But the best surprise of the night was walking out of the school past the large display of student art work. There was a big case with a few water color pieces inside. Just for fun I asked Yumiko if any of her work was in the case and she said "Yes, the blue piece with the little seal." It was such a beautiful surprise, I just had to take a photograph and post it here.

Wednesday, December 1, 2010

I Need More Suet - NOW!!

Family Photo Session

We're getting ready to make the Christmas cards so last night, Ken, Yumiko, Tilly and I ventured to the basement and set up our little portrait studio and took some photos. Here are a few for your viewing pleasure - bad hair and all.