Friday, October 22, 2010

Odds and Ends and Movement

Arise, go forth, and conquer. (Be the box turtle, courtesy of Toni McLaughlin)     

I promised exercise today, and I will mention it, but it's been one of those crazy times when life isn't always about the plans we thought we made.  That's not necessarily a bad thing, but I have been dealing with some Parkinson's [PD] issues, getting reacquainted with an old friend, and heading back to school because Fall Break ended too soon.

Be the Box Turtle is one determined little girl.  You can get to know her better at the web site she herself has created to tell her miraculous story and to provide resources for people who think "owning" a turtle (that's like owning a cat) is easy.  Check out  Be the Box Turtle

Talk about determination.  So I was THAT slow moving today.  Everything hurt from my bad knees to my cranky rotator cuff.  I needed to psych myself to charge into the 2nd half of the semester with all kinds of magic tricks and threats to inspire my students.  But I was literally shuffling this morning, and I couldn't hold my cereal spoon without flipping milk all over our cat Ralph.  Yesterday, I did my 10-minute chunks of movement with resistance bands, weights, leg raises, and my bike pedal thing .  

This morning was one of those  days one doesn't really want to take a walk in this neighborhood (we're talking inner city, but we love it), and my usual getting up time of 4AM is not the best time to be out alone on the dark streets, even with 2 guard dogs. I knew I would soon be schlepping heavy textbooks around campus in the heat. Hey, that counts as exercise, albeit slow walking.  But, even feeling under the weather, I need my early morning peace. So I put on music and warm up on the pedaler. This one came from for under $30, although you can get fancier ones.  I set it on the carpet with something behind the feet. I sit in a straight back chair and pedal as if as if I were on a recumbent bike. I try to make it at various resistances--forward and backward--for 10 mins IF my knees hold up.  Then I put the machine on a flat surface where I can pedal with my hands and work my arms.  I absolutely LOVE this exercise.  Physical therapists made me do this very early into shoulder rehab, and it's good for me for one reason: there's no way to do some klutzy movement as I can and do with free weights.

So that was about it, save for some routine face exercises I will talk about as I research them.  I might even take a picture of myself doing them. 

But other PD issues are on my mind, and I am already getting great tips.  One reader responded to my "Embarrassing Moment" by recommending a Tommy Tippy Cup. Yes!  Excellent suggestion.  At home I mix drinks in an adult coffee mug designed similar to that. But, along with my Sinemet and Mirapex, I should carry that.  Next, my friend Harvey, who has battled esophageal cancer, recommended drinking with a straw, especially when I can't swallow pills.  There's my worry I intend to bring up with my neurologist Tuesday:  Swallowing and talking are becoming harder and harder.  My primary care physician ordered a barium swallow series--gag--and it showed a real problem that the radiologist said needed to be taken to my neuro. OK, I'm scared.  

So now it's the weekend again.  In our Jewish tradition, it's Shabbat, and we don't work again till after sundown Saturday.  I study, sometimes go to temple on Saturday instead of Friday night, and pay attention to what my body and soul need [ice cream].  Lots to learn and share, friends. 

Briefly under construction...

I should be back and running [figuratively speaking] tomorrow. After a blissful fall break, school starts back today.  I promised more on exercise, and "all" I could do yesterday was what I call my "10 minute drills."  There has to be a better word than "drill," but it refers to those times I make certain I put at least 10 continuous minutes, 3-4 times a day, into good Parkinson's Movements--even if I never leave the house to walk, and even if I am dead tired.  More on that tomorrow. Meanwhile...... please leave comments. Thanks!


Thursday, October 21, 2010


Here we go. I'm the tall, skinny blond in blue leggings.

At the Blazing Toward a Cure symposium last Saturday, the most fantastically funny, inspirational, and believable exercise leader talked about something I have always believed: Exercise is the best medicine.   I have always believed that, and I used to run, walk, hike, swim, and workout on equipment in my old house where the formal dining room had become a gym.

Used to.  Used to be I was a 24-hour-on call fire investigator who was in her 40s. Now, on the eve of Medicare, I need some serious reality checks.  My big step was Saturday, Oct. 16th, when I came out of the Parkinson's closet for the last time.

After reviewing my own history of physical therapy for injuries and lately for PD and after examining exercise programs, what I want to do is share what has worked for me, what my research suggests, and what friends with PD find works for them.

Level: Easy warm-up and just plain fun

  • Balloon volley ball:  Pass an inflated balloon back and forth between 2 people or around a room of many people.  Good way to warm up, get your arms moving, and--most important--laugh.  If you have cats, this is even more fun.
  • Tennis ball movement:  I can do a million things with a tennis ball.  I will just hold it while watching TV or talking on the phone. I squeeze it and roll it around my hand in various configurations; then I change hands.  Try making throwing motions--any pitch you want that doesn't hurt your shoulder.  Pitching is more fun if you have a dog and actually throw the ball. I like the tennis ball foot exercises, because my feet always hurt.  I take off my shoes, put the ball on the carpet, and move it around with my bare feet.  I do this just to the point of pain, then plant my feet flat on the floor for a moment.
  • Resistance bands are great for total body strengthening, but I start out warming up by doing easy lateral extensions with them   Good web site for seniors using these bands is:

Be, a wise girl who's part mine
Just getting up and moving around--if possible--is good and loosens us up.  But People With PD are often battling stability problems, so do everything while sitting in a chair if you are like me and fall.  I have really bad PD days where I just fall or trip over nothing but the air.  On these days, even if I am lying on the bed, I at least do these exercises sitting down, and I always rotate my rigid ankles and try some leg raises.

I want to hear from other people about their routines, tips for better movement, and experience.  Tomorrow, I will talk about walking, which I love on "good PD days" and hate on bad ones.  Let's do it together.  Be (pictured above) is the ideal walking partner.    

Remember who won the race between the Tortoise and the Hare.

Wednesday, October 20, 2010

Parkinson's and My Moment of Fame

      I confess:  I have a really sick sense of humor.  If this had happened to anybody else, I would have laughed hysterically. 

      I was in Oak Ridge visiting my mother, who was in a nursing home.  I stayed at the Hampton Inn, which had a breakfast buffet in the lobby.  For some unknown reason, I decided to carry a cup of coffee in one hand and a cup of orange juice in the other from the drink stand to my table.  Between point A and point B was a table of men in suits, and they were discussing paperwork that they had spread all over their table.  Why I thought I could clear that obstacle I will never know--and I didn't.  With dramatic flourish,  my right hand's tremors went out of control, and the orange juice in a large cup turned into a tsunami that roared over the rim of the cup, down one man's neck, and all over their paperwork.  Then my left hand started, and the coffee did the same thing all over the floor, making it nice and slippery.  Mortified, I started to run out the door, hop into my car, and never go there again. Alas, my car keys were back in my room.

But, you know, some people are just plain nice, compassionate, and understanding.  The man I had accidentally assaulted jumped up to see if I was OK, and the other men and the woman who kept the buffet going rushed to grab towels to soak the juice off the table and their papers.  But the spotlight was on me--a situation I usually rise to.  "I have Parkinson's," I stammered, adding how sorry I was. Really. The hotel employee, a wonderful woman with a motherly streak, plopped me down at another table, brought me more coffee and juice, and told me she would do that every morning for me in the future.

The next morning I slithered unseen from the elevator to the lobby.  If those men were there again, I was going to return to my room and call room service.  They weren't, but my new friend from the staff intercepted me and took care of me.  To this day, even with unwanted tremors more controlled, I never carry a full container of any liquid.

This particular blog is dedicated to my friend Su and her Dachshund, Beanie Su, of blessed memory. We have laughed and cried together over our PD, shared detailed summaries of doctors visits,  agonized over meds, and shared exercise programs. Yet we have both lived isolated from the PD community.  Our schedules and responsibilities make that difficult. So  I am motivated to write now and to breathe life into all the PD "solitaries" out there who are like Su and me.  If you have PD or know someone who does, please join us here so we can learn from one another and brighten our lives with laughter--even if I have to swallow my pride and reveal another klutz story.
Beanie Su (1994-2010)

Tuesday, October 19, 2010

Some Q & A about Parkinson's

At Blazing Toward a Cure, one fact was blatantly obvious. The professionals repeated it. Hundreds of beautiful beautiful people provided the empirical evidence: Everybody's Parkinson's Disease [PD] is different.  There were people who walked so fast I couldn't keep up with them as we walked to and from our cars, and there were people with walkers and in wheelchairs. Some people's tremors were the obvious motor symptom and others, like me, were there in part because there was going to be a talk about the non-motor symptoms that my new friends at our table admitted scared us.  Today I want to tackle some preliminary questions I hear frequently. As I do more research, see my doctor,  hear from readers, and live each day with PD, I hope to share more information.

MaryAnn, my partner, and Emma Alice, one of our grandchildren. Both are alive thanks  to modern chemistry, loving family,  great doctors and nurses, and a hearty dose of prayer.  They also motivate me to get with the program.

Q: What is PD?
A:  It's a progressive, degenerative disease of the central nervous system and is characterized by impaired movement [e.g. the classical hand tremors] and other problems involving non-motor functions [e.g. swallowing, speech, cognitive functions].   I want to stress that I am not a physician, that this information derives from my years living with PD.  We have what works as  neurotransmitters in our brains: dopamine.  For whatever reason--age, exposure, genetics, other medications--our dopamine, to put it in lay terms, quits working.  As  my neurotransmitters misfire, I experience the symptoms of Parkinson's. Dopamine agonists, which I take in the form of cardidopa/levadopa,  bind to the dopamine receptors and enable proper firing. 

Q:  How did you get PD? Did anyone in your family have it?
A: I don't know and no.  That question came up at the symposium.  Is it nature or nurture, stress, genetics, the environment?  Michael J. Fox got it at a very early age, and there is some indication that early onset may have more of a genetic component than late.  Nobody in my family had PD, and my parents died in their late 90s. I was, however, exposed to toxic environments all my life. I grew up in the otherwise perfect city of Oak Ridge, TN, where we built part of the atomic bomb, but the beautiful environment and lots of residents and workers suffered various forms of cancer and neurological disorders.  Then I spent 16 years safely ensconced in the academic life, but at 33 I fulfilled my life long dream of becoming a fireman (sic). Talk about hazardous environments!  Did all of this cause PD? The answer is we don't know, but my body has been exposed to significant toxicity.

Q:  How do you know you have PD?
A:  Difficult question.  In my case--and I am in no way trying to give medical advice--I developed tremors when I was 56. When I turned 60 (classical time for PD to manifest itself) worsening tremors sent me to my primary care physician.  This is a man who saved MaryAnn's life, who is an absolute genius, and who really listens to and studies his patients.  He looked very worried, prescribed Sinemet, and referred me to a new neurologist.   At that point, my MRI showed nothing except a brain, which I was beginning to doubt. But my neurologist observed beginning rigidity, increasingly terrible tremors,  legs that took on a life of their own, imbalance, falling, and, occasionally, the tell-tale shuffling walk. 

Q:  What is PD treatment?
A:   I can only tell you what I do, although I know the meds I take are commonly prescribed for PD.  I take Sinemet, which is Cardidopa/Levodopa, and Mirapex.   There are other drugs with which I am not familiar, and there is also Deep Brain Stimulation.  Then there is what's looking like the most significant variable in PD therapy--EXERCISE.  And that's one motivation for this blog.  If I tell people that I am going to do this more faithfully--and report on it--I have to do it.

This is my friend--Dopamine.

Coming tomorrow:  A person with Parkinson's most embarrassing moment.

Monday, October 18, 2010

Come Run with Me

Be, the box turtle, who owns my friend Toni

No?  You might do what I do and trip over something that leaped up out of the sidewalk and sent you face first onto the ground?  OK, then, come exercise sanely with me on this first day of our new adventure together through Parkinson's [hereafter known as "PD"].

It was almost funny--a possible scene for Saturday Night Live. On Saturday, Oct. 16, 2010, approximately 500 other people with PD and their family members were leaving an incredible educational symposium sponsored by Vanderbilt University Medical Center and the  National Parkinson Foundation.  It was a gorgeous day, and there were crowds of people in the highly-congested Vanderbilt-Hillsboro Village area as we all left Belmont Methodist Church. I had never been in a group of people with PD before, and, physically, I was having a bad day. I wanted the high and the energy of a fantastic program to propel me out the door faster than the speed of light. OK....maybe a little slower. After all, I had my Dr. Marten's 5 lb shoes on, so the sprint would have to wait. Good thing. As this group of us headed towards our cars--some on walkers, a few "shuffling" as PD often makes us do, all of us moving as slowly as a herd of box turtles, I noticed the bright yellow and black banner that heralded the symposium: "Blazing Toward a Cure."  I wondered if anyone else noticed the irony there. 
Maybe our group was turtle slow, but it sure was as determined as a box turtle is when s/he sticks that neck out, stands tall, and runs (and they do, trust me) with single-minded determination.  For what we had been doing since 8AM--besides eating breakfast and making new friends--was learning from the best and the brightest and most inspiring people in the field of PD research, treatment, and management.  For me, it was a revolutionary, life-altering day. Exercise might do more for PD than meds. Terrified of my swallowing problems, I have been avoiding them by resorting to my ice cream diet [addiction], but my only exercise has been schlepping textbooks around the campus where I teach.
     So I am starting fresh, and I am armed with exercise tips and more empowering information. I am morphing from being a woman in denial about my PD and  approaching middle age [I will be 64 in Dec:)] into a proactive "PD person" who's ready to take on the world.  Won't you join me?