Confetti

It has taken awhile to really get into the new school year. I don't like getting up early and the first weeks were a bit of a shock.  Until I got used to it, I was pretty grumpy. Sometimes I even growled and snarled at my family. My daughter is much like me, so she growled and snarled right back. I had just really gotten into summer.  It was comfortable.  I wasn't ready for anything to change.  But, after a few weeks, we got into the rhythm and it just became the new “normal” routine. And I even enjoy it! Now that I am home during the day, I have time to myself, something that has always been a luxury. When summer starts again, it will be a shock to have everyone home again.

It seems this is something I can’t avoid. Whenever I find myself just getting comfortable, something comes along and changes. I barely got comfortable being married and suddenly, just like that, we were parents. I just got used to taking care of a baby, and, what do you know? The kid started to walk.

Nearly thirty years later, I can look back on all sorts of readjustment times in our family:  three children, a foster son, three foster adults, job changes, and a move across town.  And if this wasn’t enough, I was also crazy enough to insist that we have animals. Not just your average puppy or kitten; we’ve had chickens, ducks, geese, goats, rabbits, dogs, cats, guinea pigs, rats, hamsters, gerbils, fish, and a miniature donkey.

Oddly enough, the most difficult pets were the gerbils. We bought one of those colorful, plastic, expensive cages with the tubes going this way and that so they could exercise. The blasted things ate their cage. First the platforms went, chewed to confetti sized bits of colored plastic. Then together, they took down the wheel and started eating that, too. When they started in on the tubes, I put them in a glass aquarium with a top. I confess that when the first one died, my immediate reaction was, “One down, two to go.”

The adjustment to life without gerbils wasn’t too difficult.  The major changes, however, always made it feel as if our old lives had suddenly been chopped into confetti bits, too, and then thrown up in the air. When they landed, we had to try to fit all the pieces back together again. No way was it going to look the same as it had before!   What would the puzzle look like when we got it together? Would our marriage be the same? How would we all fit together as a family?

I’ve found that it’s much easier to think about these kinds of questions if I am eating chocolate chip cookies at the same time. It takes the edge off.

Our marriage would never be the same as it was before we had children. We had to step back and pick up all those little pieces of our lives. In fact, there seemed to be lots more little pieces of our lives. They included legos, matchbox cars, puzzle pieces, children’s books, and bits of unfinished peanut butter and honey sandwiches that inevitably got stuck between the couch cushions or left where we couldn’t help but step on them. Figuring out how we were going to take care of our children, remain sane, and keep the house relatively clean, as well as earn an income, took up most of our time and energy. Finding time to be together as a couple wasn’t easy, but it did make us feel young again. In fact, in trying to steal a few moments of intimate time, we often felt like teenagers trying to get away with something.

It's really okay.  Change is okay.  If we didn't have these shocks to our system to keep us awake and alert, we'd probably end up pretty boring.  It's a way to recreate our lives, renewing ourselves over and over again.  It's a challenge but a good challenge.  It's time to pick up the pieces, put our lives together, and figure out how to live in a new way. 

As we’ve gotten older, it’s been easier to make these adjustments to the various changes in our lives. We’re pros after all. We’ve been through this a lot. But the changes in our lives are a little different now. We don’t have my husband’s parents with us anymore. We miss them very much. Our sons have grown, gone to college, and come home. Our oldest son is now married and we have a beautiful daughter-in-law.  Our daughter is starting high school.  I have retired from teaching and am learning how to manage the ups and downs of my Parkinson’s disease. My husband would love to retire and he is also learning how to manage the ups and downs of my Parkinson’s disease.

And, just in case I forget that I am getting a little bit older, my doctor’s office is there to remind me. I got a call from them the other day reminding me to make appointments for a mammogram, a pap test, a well woman exam, and a colonoscopy.  Any buy one get one free specials?  I told them I'd call them back.  Then two days ago, my neurologist suggested brain surgery. 

Okay, it’s Deep Brain Stimulation surgery, the ultimate in new treatments for Parkinson’s disease. But it’s still brain surgery. I figure there’s a reason we have a hard, thick skull around our brains. We’re not really supposed to mess with anything up there. But, in the long run, this might just be what I need to do. In the short run, having this decision to make has thrown my life up in the air in little confetti bits again. I’m still waiting for them to come down.

While I’m waiting, I think I’ll have some more chocolate chip cookies. *

*may substitute glass of Bailey's Irish Creme and/or watching Eddie Izzard comedy videos

Cars, Freedom, and Bear Hugs

Do you remember the freedom you felt when you first got your driver’s license? Now you could go wherever you wanted, when you wanted, and didn’t have to wait for someone to drive you there. Now you could go somewhere all by yourself and be away from the world for awhile. Now you could be independent. Do you remember this?

Me, neither.

We had lots of rules. I was to stay off the highways, not go too far or stay out too late. And I was not to go to any “bad” areas of town. All these rules were pretty easy to follow, especially as we only had one car that was shared between four of us. Mostly I walked. Being free and independent was still a dream.

When I bought my first car, I really savored my independence. I can’t say that, with car payments, insurance, repairs, and gas, I felt free, but I did feel independent. Now, as a stay at home parent, my car is my lifeline. After dropping my daughter off at school, the day is mine. I can shop, visit friends, and go where I want to go. Not that I spend my days shopping and visiting, mind you, it’s just that I know I can.

Considering this, you will understand how scary it was for me the other day when my dystonia kicked in while I was driving. Fortunately, I was on a side road and was able to pull over quickly and park the car. Dystonia causes my body to twist and cramp until my muscles become so tight I want to scream. Usually if I wait it out, after about five or ten minutes it will begin to relax on its own. If I have someone with me and can convince them to help, it’s even better. With Parkinson’s, as with many health issues, there are treatments that tend to be as bad as or worse than the symptoms themselves, but with my dystonia, I’ve found a perfect remedy that is not the least bit unpleasant. If someone is with me and will give me a big, tight bear hug, and just hold me firmly in a hug for a few minutes, the dystonia will not only release, it is also much less likely to come back that day. This is scientific. The calming effects of deep pressure stimulation on the nervous system are well documented.

Dr. Temple Grandin, a University professor from Colorado State University, developed a “Squeeze Machine” (http://www.grandin.com/inc/squeeze.html) to help autistic and hyperactive children to calm their overactive nervous systems. A big, tight, bear hug is a rather primitive squeeze machine, but a simple and available way to get this deep pressure when it is needed.

This time, my dystonia lasted much longer than usual. My arms curled up against my chest, my shoulder blades were convinced they could touch each other if they just tried hard enough, my hands threatened to unscrew themselves from my wrists, my head pulled to one side, and my legs and feet twisted up, too. Not only could I not drive, I could not open the door or even use my cell phone to call for help. For the first ten minutes or so, I was worried that someone might pass by and see me. Granted, if another person helps me out, the dystonia will go away much quicker, but I really didn’t want to ask a stranger to give me a bear hug. If a stranger agreed readily to this, I’d be a bit worried. And I’m not convinced that a police officer would understand, even if I explained all about Dr. Temple Grandin and her work. So, I sat and waited. After 20 minutes, I began to panic. It had never lasted this long before! How long was I going to sit there! Okay, okay, stress makes things worse. Calm down. This won’t last forever.

After 40 minutes, the dystonia finally released, my muscles gradually relaxed, and I was able to drive home. I took my meds and a nap. Then, knowing I would not really get anything productive done at home, I went back out and visited a friend. I did not tell my friend what had happened but I was still very shaky after my experience earlier in the day. I gave my friend a hug and he turned and gave me a funny look. “Come here,” he said, and he put his arm around me, squeezing me tight and just holding me there until I stopped shaking. How did he know what to do? I’m not totally sure, but I know he’s very perceptive and I’m very grateful.

I’ve made some changes in my driving. I've given myself lots of rules.  I will not drive on freeways or anywhere that I can’t pull over easily. I will not drive when my meds have worn off and I will not drive when I’m tired. I’m also doing my homework. Some people with dystonia say that listening to music in the car will help prevent these episodes. My sons have promised to keep me supplied with plenty of music. This should be interesting. Knowing my sons, it could be anything from Classical* to World Music** to Contemporary Music*** to the one and only Christian Football Waltz****.

Maybe bear hugs can be used as a preventative. I think I’ll ask my doctor for a prescription.

----------------------------

*Beatles, Herman’s Hermits

** Schlag mich Baby noch einmal (Hit me baby one more time – The Wise Guys singing the Britney Spear's song - http://www.youtube.com/watch?v=fPxI8yc-YDY)

***Tiger Lillies

****Drop Kick Me Jesus Through the Goalposts of Life – written by Bobby Bare and Shel Silverstein   http://www.bertc.com/subfour/truth/dropkick.htm

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…

Update on Friday, November 7, 2008 at 8:02PM by Terri Reinhart

Whoo-hoo!  I guess I'd better change this a little:

OBAMA, Bush, Clinton, Bush, Reagan, Carter, ....

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

Update on Tuesday, August 19, 2008 at 4:01PM by Terri Reinhart

8/19/2008

Tom Ramirez had a massive stroke earlier today and is in Statton Island University Hospital, still in ICU.  Please keep him in your thoughts and prayers.

Update on Monday, August 25, 2008 at 11:02AM by Terri Reinhart

I just got word that Tom is home from the hospital and doing well! 

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.