Alternative Energy to Power DBS Pacemaker

Patrick is working on his alternative energy drawings for the DBS Pacemaker.  And his first one is below!

As a teaser, you might want to think about these other possibilities:

Solar power : Perhaps a solar panel on top of our heads?

Wind power : We could bring back the old propeller beanie caps, only with a wind turbine for harnessing the wind power.

Stationery bicycle power : If they can power a blender this way, we should be able to power ourselves, too. After all, exercise is good for us, right? What better motivation to keep exercising?

Long extension cord to recharge at night ? Or, as Patrick's picture shows, in a pinch plug ourselves in during the day. The Frankenstein bolts on the sides of our neck might have to become standard.

Zipper closure where the pacemaker is inserted so patient can change battery : Hey, if I run down, it would be nice to just stop and pick up a spare battery.

Jumper cables to hook onto another person with DBS or other power source : Just on the off chance that you do run down in the middle of nowhere but have another source of power, could we jump start?

Shut mom down now and then to conserve ener g y : Don't say it. Mom already shuts down now and then to conserve energy.

And, if replacing batteries is too much of a hassle:

Craig’s list or Ebay: “One mom, well used, batteries not included.”

More pictures from Patrick to come. I've bribed him with chocolate chip cookies.

Patrick on the Job

Alternative Energy

Alternative Energy 07/14/08

My friend Kate wrote to me the other day. She and her husband have been planning a trip to Alaska and have been eagerly looking forward to this holiday. But a small glitch has come up. It seems that Kate’s battery is wearing out and she is afraid of what might happen if it wears out while they are away. Kate had Deep Brain Stimulation surgery 3 years ago. Though it took some time to find the right settings, this has ultimately proved to be a very successful treatment for her. She taking less medications for her Parkinson’s disease and she is functioning much better than she had on just medications alone.

Deep Brain Stimulation is a surgical treatment that involves implanting a “brain pacemaker” which sends electrical impulses to specific parts of the brain to block the impulses that cause symptoms such as tremor, dystonia, or chronic pain. Though not without risks, most people have said that they have significant improvement with the DBS surgery. The risks are those that one would expect from any surgery that includes placing electrodes in the brain – the possibility of infection or bleeding, cognitive or personality changes, seizures, death, and the ability to pick up radio stations from Taiwan . On a “ WebMD ” page, I found a statement that I found puzzling. In describing the disadvantages of DBS surgery, it said, “Device may interfere with antitheft devices and refrigerator door magnets.”

I’m already compiling my list of questions to ask my doctor.

Then there’s the battery thing. When the battery runs down, you can have quite a sudden “off” period. When you’re taking meds for Parkinson’s, you find out quickly what “ons” and “offs” are like. When I am on, I feel mostly normal. I can walk and talk and do most everything I need to do. When I am off, all hell breaks loose. A friend of mine put it well. He said that I looked like a marionette with a sadistic puppeteer. My arms and legs just don’t want to listen to instructions. And if I’m not twisting all over, then suddenly I’m on total slow motion mode and have trouble moving and speaking. One day I overslept and my meds wore off completely and totally. I couldn’t get out of bed by myself. What I am told is that when the DBS battery wears down, you can suddenly go from being active to being bedridden in a very short bit of time.

My doctor has already has told me that DBS is probably in my future. If I’m going to run on batteries some day, I need to check this out. The batteries in the pacemaker are supposed to last anywhere from three to five years. Then they will need to be replaced, which requires a surgical procedure. This is why Kate is a bit worried about having her batteries run out in Alaska . It’s not as though you can just go to your local Walmart and pick up some spares. Hopefully she’ll be able to schedule this surgery before they leave on their trip. If not, well… we had a little bit of fun contemplating the possibilities. Hotwiring is probably out. Can you jump start a brain pacemaker?

Our family is interested in alternative energy sources. Our oldest son converted his 1981 Mercedes diesel car to run on vegetable oil. A friend put solar panels on his house and got a small three wheeled electric car. To recharge the car, he just plugs it in to the household current, which, of course, is being powered by solar energy. I am putting my laundry out on the clothesline and growing my own food. We even have a compost bin.

Could there be an alternative way to power the pacemaker? What might that look like? I enlisted my family’s help. First, we came up with as many ideas as possible. Then, I left this in my son’s capable hands.

(to be continued...)

~Since this was written, Kate was able to get her battery replaced.  She can breathe out and enjoy her trip to Alaska!  But the research will continue! 

And, Kate, I hope you will bring back some good stories!  http://katekelsall.typepad.com/my_weblog 

In Good Times and In Bad

7/10/08

My oldest son called a week ago with the wonderful news that he and his fiancé were married – last March! We were delighted! We adore his wife and feel that she became a part of our family from the first moment when she arrived in Denver. We weren’t particularly surprised that they were married as they had talked about this possibility with us early in March. Being married solves some logistical issues about things such as health insurance. Planning a wedding was not practical at this time either. They were both finishing their master’s theses.

It’s easy to get married in Colorado now. Just fill in the form at the proper city office, show your ID and pay $10.00 for the marriage license. No Court Justice, minister, or priest is needed. A couple can “solemnize” their own marriage or have someone who is special to them be the person to solemnize their marriage. Personally, I think this is lovely!

It made me think of our wedding. Chris and I were married on May 5, 1979, in a little church in Buffalo Creek, Colorado. It was a very simple wedding and everyone said it was beautiful. I’ll take their word for it. One of my favorite memories was that so much of the wedding itself ended up being wedding gifts from friends. The cake was provided by a friend who loved to bake. My sister made my dress. Another friend made banners to hang in the church. I went to purchase a wedding cross for the top of the cake and the owners of the store, who knew our family well, wrapped it up and gave it to us at no charge. Even our honeymoon was a wedding present! We stayed in a tree house in Deer Creek Canyon that was built by our friend, Fr. Roger Mollison, the man who introduced us and, when we were engaged, laughingly told everyone that we were going to “commit” matrimony. This gift was a mixed blessing, however, as it snowed just three days after our wedding.

We also wrote our own vows. Looking back on them now, I realize that they really weren’t all that different from the traditional vows. We included the classic “in sickness and in health, in good times and in bad”, etc. I think that was required.

These are good vows, of course, but somewhat vague. I mean, what constitutes good times or bad times? What kind of sickness are we talking about? Did we realize that we were signing up for things like being thrown up on by small children at all hours of the night? And, of course, Chris didn’t know that that he was signing up to have a wife with Parkinson’s disease. I think if we had to write vows today, I’d add a few things. To be fair and protect the innocent (me), I will make these a bit more generic and add a few suggestions that I’ve received from friends. If you see any resemblance to your own story, it could be you.

Do you take me to be your lawfully wedded husband/wife, to have and to hold, to love and to cherish even when:

~I haven't had much sleep and haven't had the chance to shower for days?

~the house is filled with children's toys, dirty laundry, and a layer of dust that could serve as insullation?

~there is wet, dyed wool hanging in the bathroom shower, making the entire house smell like wet dog and turning the bathtub a lovely shade of purple?

~the house smells like a brewery and sounds like a rumbly tummy because there is homebrew beer fermenting in the dining room?

~the keys are locked in the car and you come all the way across town to the rescue, only to find out that the car window had been open the whole time?

~quality time together means eating at the hospital cafeteria while our child is in surgery, making valentines for our child’s kindergarten class, or watching a Little League baseball game?

~I forget to take my meds and suddenly look like a marionette with an out of control puppeteer? Or can’t get out of bed without help?

~there have been car parts or bicycle parts or plumbing parts on the living room floor for the last two weeks?

~dinner is the “chef’s surprise” and should be labeled “Eat at your own risk.”?

It’s probably good that the vows we make are a bit vague. I certainly wouldn’t have wanted to know too much about what would happen or could happen. The one thing that we do know is that when we make those vows, it’s not “all about me” anymore. It’s all about WE. And it’s really not about the easy times. It’s about those times when we stumble and fall. It is when we need our partner to help us up or we need to help our partner up, even when we don’t especially feel like doing it.

Do we still promise to love and cherish each other at those times? Would we still make those vows, knowing now what it is that we’ve signed up for?

I do.

And Now for Something a Little Different

I was standing at the beginning of the trail, looking down the long and winding road. This was a number of years ago and I was teaching kindergarten. One of my colleagues loved taking the children for long hikes in the mountains and I tagged along. Once there, I knew I was in for a challenge. Walking is not my forte. But before I knew it, one of the dads was standing beside me, waiting. “I want to hold your hand”, he informed me. I knew that he didn’t have any romantic intentions. He would just be there if I fell. I did alright, with a little help from my friend, until we came to a hill. I slipped a little and thought to myself, “Please, hold me tight! Don’t let me down!” Another parent held on to my other arm and the three of us made it down the hill together. “I’m glad you’ve really got a hold on me!” I said. “I thought I was sure to fall.”

We also went to the Berry Patch Farm every year to pick raspberries and strawberries. It is a large farm and by noon, I felt as though I had been walking through strawberry fields forever.

Two summers ago, I decided to go to the Renaissance Festival with my family. I should have known better. After walking here, there, and everywhere, I wondered out loud whether they would sell me a ticket to ride in one of the horse drawn wagons. That was a big mistake. My daughter began chanting “Bring out your dead. Bring out your dead.” I informed her that I was not yet dead.

Some days, it’s all too much.

It’s getting better, partly due to the leg braces that were suggested by my physical therapist. But I’ve learned something else, too. Music can be magical in helping me to move. Usually, my speed is that of a geriatric turtle, but if I am listening to music that is rhythmic, my legs tend to follow along. If the music is faster, my walking will be, too. The therapist suggested listening to music with headphones, but then I tend to not pay enough attention to what I am doing and I walk into walls. I f I’m going to walk into walls, I’d rather slow down. So I try to just sing quietly to myself.

The only problem is, I can’t think of any songs.

(my apologies to the Beatles, Monty Python, and Mark Gordon)