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)

Menagerie

6/19/2008  

I found another dreamer. Poppi confessed to me that she is thinking of buying some land so she can build a studio. She also recently bought sixteen chairs, SIXTEEN of them, to fix up and resell. She doesn’t have room for them so there are chairs everywhere, even in her entryway. Friends are asking her is she is moving. I can’t imagine her crocheting lace doilies. She has power tools.

In other words, she’s a gal after my own heart!

When Chris and I were first married, we talked about our hopes of buying land someday. We wanted room to have a small farm, grow our own vegetables, and have animals. We wanted our children to grow up around the natural world and for them to have real work to do. There is nothing like a farm to provide real work and plenty of it! We are now down to three rabbits and one guinea pig, but for a number of years, we were able to fulfill our dream of having our children grow up taking care of animals.

We were never able to buy a house with land in the country so we did the next best thing. We bought a house on nearly half an acre, in the middle of Wheat Ridge, Colorado. Wheat Ridge is a small city and a suburb of Denver. If we travel half a mile down the road, we cross into the city of Denver. But here in Wheat Ridge, we have a little oasis. It’s changing now, so people who move into the city can no longer have farm animals, but when we moved in to our neighborhood, the only animals that were not allowed were pigs.

That spring, when our sons were 7 and 9 years old, we invited a few of their friends over and went out to purchase ducklings. We bought three ducklings and brought them home in a box in the car. We nearly didn’t make it home. It made me wonder about the city rule that did not allow pigs. I had always heard it was because of their unique odor. I must tell you, pigs have nothing over ducklings where smell is concerned. We opened the windows and the boys all held their heads outside, plugging their noses and making rude comments that, I must admit, were terribly appropriate.

Once we were home, we went about preparing a place for the ducklings and for the chickens that arrived a week later. The chickens eventually multiplied, as did the ducks, and we also added geese. The geese were always my favorites. They are very sociable animals and loved to follow us around the yard as we did yard work, stopping when we stopped, looking up to us and chattering away. We talked back to them and, if anyone had looked, they might have been convinced we were having a real conversation. Maybe we were.

A couple of years later, my father gave me a goat for my birthday. I was thrilled and even more thrilled when I found out she was pregnant! A few months later, I found out I was pregnant, too, so it was a shared experience. We got grumpy together. That was the year of babies at our house. Chicks hatched out and one chicken sat on a duck egg and hatched a duckling. The poor hen about went crazy trying to teach that duckling how to scratch. She also had a hard time keeping him away from the water. In April, twin goats were born, both female. Now we had Blossom and Buttercup with Bonnie, their mom. We had dozens of chickens, ten ducks, two geese, three rabbits, and two dogs. Meal times were complicated as the ducks preferred dog food and the goats liked to steal the chicken eggs and eat the rabbit food.

Our daughter entered the menagerie…I mean family…in July, and we were kept very busy. It’s not surprising that she loves animals, too.

Eventually the goats had to find a new home as they became expert escape artists and when I discovered our elderly neighbor had been luring them back into their pen with dog biscuits when we were away, I figured it was time for them to find a farm.

When our daughter was in first grade, I decided that she needed an animal to ride. And the perfect animal for her wasn’t a pony, it was a miniature donkey. Stormy spent 7 years with us before she recently retired and found the good life on our friend’s ranch. She now has a best friend, a horse so tall that she can run under him easily.

At some point during this time, I visited my Aunt Margaret in a Milwaukee nursing home. She had been diagnosed with Parkinson’s disease about ten years earlier and now was dependent on others to take care of her. The Parkinson’s had also robbed her of her ability to speak. She still listened intently, though, and I wondered how much she was really taking in. I described our little farm and at one point admitted that my husband thought I was crazy. For the first and last time during our visit, my Aunt Margaret spoke.

She said, “I think he’s right.”

(Note to Poppi: GO FOR IT!)

For Crying Out Loud!

6/8/2008

My disability benefits were recently approved. In record time, too, as they were approved in less than a month from the time I applied. That’s not supposed to happen! I was told that I’d undoubtedly be denied at first, then I’d have to employ a lawyer, then it could take up to two years to be approved. But that didn’t happen. They saw my records and decided I was disabled enough to not be able to work. They approved this even before seeing the letter from my doctor.

Then it hit me. Was I really that bad?

I rebelled. I cleaned the garage and moved furniture. I gathered trash and another large pile of old things to give away. I pushed myself all day. And then I was flat on my back, exhausted, and couldn’t move for a couple of days. I cried.

It’s embarrassing how easily I can cry. I cried at the end of Star Trek: The Wrath of Khan. I mean, geez, Spock saves everyone’s life and now he’s dying and there’s that emotional scene where he’s talking to Captain Kirk and no one can do anything to save him. I cried. And I was really grateful that I was alone. And it was much worse whenever I was pregnant. Then I could watch slapstick comedy and tear up. It didn’t take much. I don’t mind crying, actually. If I am sad, it’s a wonderful release and I feel so much better afterwards. Often I can solve problems more quickly after a good cry, too. I rarely can stop tears from coming if they’re going to come, but I will also admit something else. I would really prefer not to cry in front of other people.

Crying in public is not cool. People react. They pat your arm and say something sweet and comforting. They offer you a drink of water and generally do everything in their power to get you to STOP crying. They think you’re upset about something. And maybe you are. Usually, I’m just pissed off that I happen to be crying in public – again. Then the pats on the arm and the sweet words aren’t much help. I rather swear. Or maybe hit something.

If you cry in front of your doctor, you are generally offered drugs, which is fine if you really want drugs. It’s even legal.

It seems to me that since crying is something that humans have done for thousands of years, there must be some purpose to it. And if there is a purpose to crying, why should we be embarrassed or try to hold it back?

I was curious enough about this that I did some research. I wanted to find out if there are any physiological benefits to crying. My research was thorough and complete. I looked it up on Google. I found two articles (you’ll find many more, I just read two), one by Charles Downey and the other by Dr. Kevin Keough. In the first article, I learned that crying in public was considered normal until the Industrial Revolution. At that point, we suddenly needed diligent, focused workers, not emotional ones. Crying became a solitary activity. Before that, even our heroes cried! Odysseus cries in nearly every chapter of Homer’s Iliad.

Dr. Keough talks about the chemistry of tears. It’s amazing!! When we cry out of sadness or frustration, our tears actually contain stress toxins and stress hormones that would otherwise be affecting us physiologically in a negative way. In fact, it is those stress hormones that attack the parts of the brain that are responsible for mood disorders. Crying helps to get rid of those nasty buggers so that our brains can feel safe. And it was even found that the tears that come when one cuts up onions are not the same as the tears that come when we are sad. It’s those tears from sadness that are so healing. Holding back our tears, on the other hand, is not at all healthy.

My mentor teacher always asserted that crying helps prevent head colds. I believe this is so because I have had only one head cold in the last six years. Every time I get the sniffles, I hope that something will make me sad. I don’t like head colds. So far it has worked very well.

After a good cry, there is something else I need. The pat on the arm is fine. The sweet comforting words are also okay. But what I really want at that point is for someone to say something totally off the wall and make me laugh!

Another wonderful release, laughter is like the rainbow after the rain.

People who keep stiff upper lips find that it's damn hard to smile. ” Judith Guest

Dreaming……..

6/2/08

Did you ever have one of those days when you just knew you could do anything? You feel good and confident and if anyone asks if you’d be willing to help with something, you immediately reply, “Of course I will!!” and you mean it.

I must have had one of those days a while back because now I find that I’m responsible for writing the names of all of our high school graduates on their diplomas in beautiful calligraphy. And, that’s not all. The person who writes the names on the high school diplomas also writes the names of the 8^th graders on the certificates that they are given at Continuation. I will get them done and I will probably even enjoy it, but there is some humor in giving a calligraphy job to a person with Parkinson’s disease. I’d better be fully medicated when I begin this!

From time to time, I am pretty realistic about what I should and shouldn’t take on. I have learned not to volunteer in a classroom all day or I will be thinking murderous thoughts by the afternoon. That’s not good. I have learned that any heavy work has to be done in short increments, like a minute and a half. Then it’s time to rest. I don’t say that I CAN’T do something. I just find ways to do it little by little.

Then there are other times when I just dream. I get ideas all the time. I suspect it drives my poor husband nuts, but I can’t help myself. I know full well that 98 % of my ideas won’t fly and I don’t expect them to. The fun is in coming up with the ideas to begin with.

When I left my job, I had all sorts of plans. I looked into a number of job possibilities and then looked into going back to school to get a degree in special education. I researched every angle, calling the advisor at the college and figuring out how I could work half the day and go to school the other half day and get my degree in four years – somehow, without having murderous thoughts by the afternoon. I decided I would build a new chicken house and raise chickens, ducks, and geese again. I also looked into putting a walkway in our garden, building up the vegetable beds and planting roses along the fence. I plan on having our garage completely cleaned up and organized by the end of the summer, a bread oven built in back of the garage, a deck built by my studio, and my workroom cleaned. I also want to do volunteer work, travel, pose nude for a life drawing class, and learn to play at least one musical instrument well. I have a wide variety of interests. And these are just the tip of the iceberg. I haven’t even included anything about the long list of artistic projects that I simply must do someday soon.

I did accomplish one goal. We have semi finished our little “studio” building in our back yard and it is home to a few art workshops. I don’t hope to make a living with my art work, I just want to open up the space and invite people to come and work and learn with me. I enjoy creating art with other people.

Now I also have all sorts of advisors coming up with ideas for me. My former colleagues would like me to make crafty things for their classrooms. One friend has been trying to convince me (unsuccessfully) of how much I would LOVE skydiving. I have a new exercise coach who has told me that I WILL start doing Tai Chi. He’s a big guy, from Delaware, and he’s into Martial Arts. He’s going to be calling me regularly to make sure I’m following through, so I think I will. Another friend feels that I should be relaxing and watching lots of movies. He also checks up on me regularly. And my younger son says I should go back to college, but not yet.

When we drive down Federal Blvd. in Denver, there is a large billboard showing a photograph of a woman receiving her college diploma. The ad announces “The World’s Oldest College Graduate: Nola Ochs, age 95.” My son wants me to beat that record. He wants me to go back to college, but not before age 92. Then after four years, I’ll have my degree at age 96. He’s also added another idea. “But mom,” he says, “you really should live in the dorm.”

I still keep my hatchery catalog. Maybe someday I WILL have a nice chicken house again. I will also keep my gardening books, my wood working books, and my college catalogs handy. I plan on coming up with lots more ideas, too. If it happens that we do have more than one lifetime on this earth, I’ll be in good shape. I’ll have enough to keep me busy for a long time!

But first, I’d better get those diplomas finished.