Cramming

Bush, Clinton, Bush, Reagan, Carter, Ford, Nixon....

Pay attention, now. There will be a test at the end of the article.

Johnson, Kennedy, Eisenhower, Truman...

What am I doing? In just a couple of weeks, I have my last big test for my exercise study. It involves a lot of things like making a bed, carrying groceries up and down stairs, sweeping up the oatmeal that the therapist just spilled all over, picking up scarves from the floor, and seemingly dozens of other things. It's a practical activity marathon that lasts for two and a half hours.  Here and there, scattered throughout these activities, are questions and activities that also test my cognitive abilities.

I understand why they are doing this. I've been exercising for nearly 16 months now, under the direction of a physical therapist and the doctors who are managing this study want to see if my ability to perform daily living tasks has improved with the exercise. One of the tests that I dread is the six minute power walk. SIX WHOLE MINUTES!! For those of you who say that's nothing, well, I guess I can't say anything to that. It used to be nothing to me. I took 30 minute power walks on my breaks from the classroom nearly every day. But walking is much harder for me now and this difficulty was one of my first symptoms that eventually led to a diagnosis of Parkinson's disease.

Roosevelt, Hoover, Coolidge, Harding, Wilson...

When I was first diagnosed with Parkinson's, I went through a thorough neurological evaluation. In fact, I think I went through three thorough neurological evaluations, because of the studies I am participating in. In each one, I was asked to do many gross motor and fine motor movements. Then, in the middle of all this, they started asking me questions. I got a little concerned. Yes, I know my name and my birthday. I know what state I live in and what day of the week it is. I know that the object the doctor is holding up is her pen and that it is used for writing. I was even a little irritated at how easy these questions were. Did they think I was stupid?

Then came the killer.

Count backwards from 100, subtracting 7’s.

I started to laugh and said, “No”. Who were they kidding? Count backwards subtracting 7’s? I might have gotten the first (93), if I had really thought about it, but hey, what did subtracting have to do with Parkinson’s? I was a kindergarten teacher, not a math teacher. I laughed and didn’t do it. Another question at another evaluation: Name the presidents, starting with the most recent and going backwards. Again, I laughed. I did remember the current president and Clinton, but that was the extent. Actually, I remembered quite a few presidents, just not in order.

I didn’t think about this much until I had to request my medical records for social security. I read them. It’s a good thing to do, reading your medical records, but sometimes it can be humbling. Under the results of the neurological exam it said, “Patient denies having cognitive problems, however……” I guess I didn’t score very well.

At least the daily living skills test has one bright side. It confirms my decision to leave the kindergarten teaching. My colleagues would laugh at my description of the marathon test. Two and a half hours? That’s nothing! A kindergarten morning goes from 8:30 am to 1:00 pm, five days a week. And what does a kindergarten teacher do? Sweeps the floor, picks up toys and play cloths, carries children (sometimes even up and down stairs), cooks, vacuums, leads a movement circle with the children, and walks back and forth around the play yard for, well, longer than six minutes that’s for sure. There is even a cognitive part. After all of this movement, the teacher has to remember a story well enough to tell it to the children and be semi coherent when parents arrive to pick up their darlings. It’s then that parents will think up questions that make the neurological exam seem like, well, like kindergarten.

Anyway, I’m not taking any chances this time. I’m ready to bring up those cognitive scores and show the therapist and doctor that I’m one smart cookie. I’m cramming for my test.

100 – 7 = 93,86,79,72,65,58,51,44,37,30,23,16,9,2         

Hint:  Subtract 10 and add 3                                                                                                                   

Taft, Roosevelt, McKinley, Cleveland…

PLM Interviews at the Unity Walk

Tom Ramirez from Patients Like Me answers questions about his Parkinson's Disease at the Unity Walk in NYC.  You can also access other interview from here. After this video plays, there will be pictures underneath to click on.  One that I found interesting was about Parkinson's and dancing.

You can also access these interviews on the  PLM PD youtube page

Getting from Point A to Point B – a research project on accessibility

I’ve been involved in a research project these last few weeks. I hadn’t intended to go quite so deeply into my research, however, once I started, it was hard not to see examples everywhere I looked.

It began with a trip to San Francisco. My daughter and I were invited to my niece’s wedding in Exeter, CA, and we decided to go by train. A friend of mine asked if I would report back and let him know how accessible the train would be for people using wheelchairs. Great! Not only would I be researching for my friend, but learning about accessibility options and traveling is also good for me. Though I’m not so restricted in my ability to move, it can sometimes be a challenge to get from point A to point B.  A wheelchair may someday be in my future.

We found out that Amtrak has a special sleeper room that is accessible. They also give discounts to people with disabilities. In San Francisco, we learned that even the old streetcars (not the cable cars but the electric streetcars) are accessible as are the buses. This is needed in the city. I couldn’t quite imagine a wheelchair going up or down those hills, not until I saw one do it. I got off a bus and looked up just in time to see a man approaching the curb in an electric wheelchair and, as I watched, the chair climbed right over the curb! I did a double take and when I looked next, the wheelchair was balancing on two wheels allowing the man to be at eyelevel with the other people around him. I stood there staring stupidly with my mouth wide open. I eventually found out that he was using an “IBOT” (www.ibotnow.com), invented by the same man who invented the “SEGWAY”. Unfortunately, the nearly $30,000 price tag would deter most of us from taking advantage of this new technology.

We also rode in my cousin’s car in San Francisco. One has to know how to drive well in the city. I mean, in Denver, you’d hardly ever see anyone driving down the light rail tracks! In San Francisco, I couldn’t figure out whether there were any hard and fast rules about driving. The intersections looked like spiders’ webs of electrical wires strung in a seemingly chaotic pattern above the street. Cars darted in and out, sometimes right in front of the streetcars. No one seemed to mind, too much. At least everyone seemed to generally be going the same direction. As busy and hurried as New York, but a lot more mellow, San Francisco is like New York after a couple glasses of wine.

The most accessible form of transportation that we found was the ferry boat. After attempting to navigate my way around the hills and streetcars, we ditched the city and took the ferry to Sausalito. There, the hills were a little friendlier and the buildings shorter. I could figure out where we were. And the ferry ride was delicious! Not only was it accessible for people who used wheelchairs, there were many people who brought their bicycles right on board. We stood by the rail the whole way across the bay. Being from Colorado, large bodies of water are a source of endless fascination.

Coming home again, we learned that there had been a freight train derail just outside of Reno. That meant we would be bused to Reno and there we would catch the train. The bus ride was less than desirable. If the ferry was easily my favorite form of transportation, the bus would be my last choice. Though it is technically accessible, the man who rode in his wheelchair was packed in tight right next to the ramp. It didn’t look very comfortable and a larger wheelchair wouldn’t have fit at all.

And if this wasn’t enough for my research, we came home and decided to spend a day at Elitch Gardens Amusement Park, where our son is working as a ride operator this summer. I wanted to see him at work. My daughter and I went with our good friend and his daughter. They were amusement park pros. We continued on with our research in getting from point A to point B, though in most cases, it was more like getting from point A to point A again with a lot of spinny, twirly bits in between. Many rides are wheelchair accessible but only if you can transfer easily from your wheelchair to the ride. Otherwise, don’t even think about it.

I actually did fine after I had something to eat but on the first few rides I got more than a little queasy. And of course, it didn’t help that my friend kept talking about how one should really eat Chinese food before going on wild rides so, just in case you threw up, it would be more interesting, all the while he was making the car spin as fast as possible.

As for the train, I would recommend train travel to anyone, especially the California Zephyr trip between Denver and San Francisco. You go through exquisite canyons through the Rocky Mountains, following the Colorado River for many miles. The ride is long, approximately 35 hours, but you can walk around, go to the observation car, eat in the dining car, and get to know your fellow travelers.

And no one notices if you walk a little funny. Everyone walks a little funny on the train.

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)