The Aria Almost Sung (redux)

  My formal voice training resumed yesterday.  On the eve of my 65th  birthday, my debut at the Metropolitan Opera must certainly be in sight.  The greatest sadness in my life has been not being able to sing. My untrained voice sounds like a sick truck. Yet it makes no sense. I have the musical talent. I was a prodigy on the piano at  age 4. My grandfather was an opera singer,  so I should have inherited some of his abilities. My powerful lungs allow me to swim under water longer than most people, and, I am endowed  with the body of famous Wagnerian sopranos. Then there's been my lifelong passion for opera.  When girls of my generation were swooning over Elvis, I was secluded in my bedroom listening to the Saturday Met Broadcast.

 But I couldn't sing. I could soar to the arias and fall in love with the coloraturas,  and I could spend my hard-earned baby- and pet-sitting money on membership in the pricey Metropolitan Opera Guild, and I will never never fall out of love with opera.

 Parkinson's [PD]. however, can rob us of the voices we do have.  Sadly, many Parkinsonians find themselves eager to express themselves, while their voices are reduced to a whisper. My own speaking voice now fatigues during a long teaching day, and I can no longer raise my voice or yell when necessary. Then, there is this inability to swallow that often accompanies this loss of vocalization. My neurologist sent me to Vanderbilt's state of the art  Pi Beta Phi, Bill Wilkerson Speech and Hearing center for evaluation and speech therapy.

 "Say 'AHHHH' and hold it as long as you can," ordered my young speech therapist. "AHH, Ack, choke, cough."  I lasted 7 seconds. Then, after 2 more attempts, she told me to start with the same AH and run my voice up as high as it would go.  Two notes above my initial "AH" I broke up, this time gasping for breath. Then my big break came!  She told me to start at that original "AH" again and do a bass run to the lowest "note" I could reach. My basso grandfather would have been so proud. Out came a deep, melodious, descent to what I am certain was a low G, which I held a phenomenal 20 seconds without losing voice quality. I was astonished by this operatic sound.  "WOW!" Sara exclaimed. "You do not need the 17-week Lee Silverman PD speech therapy method in its entirety YET." We continued other aspects of my evaluation--reading, talking non-stop for 90 seconds [harder than one might imagine, even for me], then scheduled a session to teach me how to work on my voice at home.  The PD "silence," it seems, is not only far off, but might even be averted with dedication to this training.  Additionally, continued work on this part of my anatomy might strengthen the muscles that will help me swallow non-ice-cream foods and pills.

 But I digress.  I had learned several very valuable lessons.  Opening the throat to say "AH" (or to yawn) is something we Parkinsonians must do every single day.  We must also read out loud every day--perhaps a paragraph or more. And we should do these things in a LOUD VOICE! 


And, now, live from Lincoln Center....

http://www.youtube.com/watch?v=pvgEHqW1tXk

Is it Parkinson's or is it klutziness?

The tremors came first for me, but my first neurologist thought it was Essential Tremor Disorder. Then, when I turned 60, came worse tremors and what seemed to me to be a new kind of fall. Here's where the riddle was, though. In Yiddish, we have a word klutz which more or less translates as a clumsy person. But the beauty of Yiddish is its names for people according to such characteristics.  The Yiddish--klutz, nebbish, schlamazel--says it all so colorfully that the Yiddish is absorbed into English and even non-Jews no longer need a definition of "she's a klutz."

I really know from klutz (Yiddishism).  I am convinced that the word was derived from observation of an ancient Hoffman ancestor back in Germany. So why should I think that falling over sideways while standing in the driveway would be cause for alarm? Or tripping over air? I would get defensive to hide my embarrassment: "And just how many great  female Ashkenazi Jewish athletes have there ever been? "

My new neurologist asked about falling, and I confessed that it happened too often. And it happened for no reason-- the sideways thud where my feet wouldn't untie themselves and nothing would balance me. In short, all the movement questions--and their painful answers--came down to four significant indicators of Parkinson's Disease in Primary symptoms of Parkinson’s disease:

• Bradykinesia – slowness in voluntary movement such as standing up, walking, and sitting down. This happens because of delayed transmission signals from the brain to the muscles.  This may lead to difficulty initiating walking, but when more severe can cause “freezing episodes” once walking has begun.
• Tremors – often occur in the hands, fingers, forearms, foot, mouth, or chin. Typically, tremors take place when the limbs are at rest as opposed to when there is movement.
• Rigidity – otherwise known as stiff muscles, often produce muscle pain that is increased during movement.
• Poor balance – happens because of the loss of reflexes that help posture. This causes unsteady balance, which oftentimes leads to falls.

It's important here to remember that symptoms don't always manifest at the same time and are as unique as each individual.  As we explore memory loss, the movement disorders attack with a vengeance. Several things simply flew out of my hands during class on Tuesday.  Then I almost fell in the cafeteria when I lost my balance, and my feet wouldn't compensate. This was also the day I forgot my wallet, a problem compounding my forgetting to get gas the day before.  This  week I battled defeat.  No new tests have been performed yet, but I can't leave it all up to modern medicine. I am responsible for challenging mind and body. MaryAnn and I are studying Hebrew, I read that Pat Summitt is back coaching the Lady Vols, and I retired from teaching effective December 31st. I will stick my neck out and keep going.  

So many mountains to climb and things to see...
(courtesy Toni McLaughlin and Be, Soultone)

My Brain

I haven't written for several months. I had started on a killer exercise program, because I always thought exercise cured everything. Sort of.  But I semi-sabotaged my workouts and my schedule by once-again signing up to teach more English classes than I had either the energy or the mental sharpness to manage. Now my stand-up comic routine is in jeopardy. Oh, my professor approval ratings remained high, and I conquered THE HILL every morning on my walk. But inside my brain, changes we can't define or diagnose yet threaten everything.

Not meaning to be overly dramatic, I have started having memory lapses--bad ones.  I have caught myself in the middle of a lecture forgetting what the topic was. By early evening, I am several degrees of useless, and I can no longer teach evening classes, which were once my favorite.Last Spring semester, it became somewhat of a distraction that my Monday night class [American Literature] and my Thursday night class [Persuasive Writing]  started getting each other's assignments and, worse, pieces of the wrong lecture.

Now the detective work starts. Fortunately, my neurology team at Vanderbilt is the best there is.  So the tests start soon, and they include a sleep study and memory tests, as we try to figure out if this is Parkinson's-related [I can't say this word easily] dementia or some form of PD memory loss, some other brain problem that might be associated with hitting 65, or colossal fatigue resulting from 40 years of a professional rat race that's about to crash down to a retirement this workaholic never seriously planned.

At this point, my goal is mental and physical exercise, both recommended for Parkinson's patients and virtually everyone else.  While I take the tests and talk with my neurologists, I will document the journey here, but I cannot yet recommend any particular web sites or resources for memory loss and Parkinson's. This is my journey, but maybe it well help others.

For courage in this battle and strength to keep running and studying, I have to look no further than 168 miles east to Knoxville and  University of Tennessee Lady Vols Head Coach Pat Summitt, who, at age 59, has announced that she is suffering from dementia.  There might be significant organic differences, but her story struck a chord: last season, this pioneer of women's sports forgot some of her basketball plays.  My playbook is a Norton Anthology of American Literature, but I forgot what I was teaching in the middle of the game too.

To my family, friends, colleagues, students,  fellow PD people, and anyone concerned with memory loss, please be patient with me, help me document the journey, and maybe we will all learn a little more about this wondrous brain.

Half birthday coming up

June is a significant month for me.  Our anniversary is the 16th, a day we thought might be our Jewish Wedding Day, but it's looking as if that will come a little later.  Then there's the 3rd.  My family--with birthdays clustered in December and early January, adopted Winnie the Pooh's invention of the half-birthday--something to bring festivity to summer and an excuse to make cake.  This half birthday I will be 64.5, and the Medicare supplemental policy solicitations are flying into the mailbox daily.  

But June 3rd is something even more important than cake (for sure) and a chance to ponder Medicare. It will be the 4th month anniversary of the day I started Fitness Boot Camp.

 Let me begin with a disclaimer. The image above isn't me. I would never wear that outfit, and my hair doesn't look like that. Nor will it ever.  But I do like the image, because it suggests motion, fluidity, grace, and balance--none of which I have. Oh, I do have motion and am relatively lucky to be able to still move well, but the other 3 left me a long time ago.

Those of us with Parkinson's have more incentive than most to JUST DO IT.  In the last few months, I have gotten stronger, lost 30 pounds, and my "fat jeans" come off without being unzipped first and are now in a pile to go to a thrift store.  I can get onto my exercise mat more easily, and getting up off of it was a piece of cake this morning [bad image--no cake allowed].  Yet I still force myself through this routine worrying about those annoying PD issues: falling, tripping over nothing, and getting off balance.   So there are a few tips I can offer others with PD.  Let me recommend, first, the absolute best diet and exercise log on the internet.  My Food Diary gives you all the tools to look up everything you eat and every exercise you perform, and it keeps track for you--a must if weight loss or maintenance and overall fitness are your goals.

My boot camp routine calls for core workouts--crunches for abs, leg raises, and--egad--push-ups (modified are OK).  I love my "floor exercises."  I move from exercise to exercise--1 set each--to maintain a cardio routine, but that is not my primary goal.  In addition to weight loss, my primary goal is strength and balance.

After 2-3 sets of these exercises, I get up and lift dumb bells. I will talk more about strength training next time, because I have come to realize how important strength --weights and resistance--are as we grow older. They may just be even more important than cardio workouts for us seniors. And I cannot forget stretching and flexibility, so we will visit those in the next few days.

My entire life since Feb 3rd, has been this fitness program. I have taught my English classes and tried to be a decent partner. But I have literally been in seclusion as I work fitness back into the life of a person who used to run, hike, eat right, and--oh, yes--fight fire.  Getting back in shape at age 60+ isn't easy, and now I have Parkinson's movement problems to challenge me.  So, as I get this together, I hope to share a good, solid exercise and overall healthy living program with my fellow Parkinsonians and anyone else who's interested.  But, first, I have to reclaim my mat.

She's back and--yes--IMPROVED!

I confess.  Since my last blog, I have been really down in the dumps.  Some of it might be a little seasonal affective disorder (SAD), which this winter-loving person doesn't want to think she has. Then December is my hardest month, and school started in January, and.... I have run out of plausible excuses.

So here's the scoop.  I want to  blame PD, and I could find a host of other "reasons," but I have ever-so-gradually gotten out of the strong fighting shape I was in when I was younger.  Today and tomorrow are new days, so bear with me while I ignore the past and forge ahead with my handsome, young personal trainer, a diet, the encouragement and--groan--outspokenness of my partner, and a new attitude.

I have started fitness boot camp.  Knowing I had to do something for my body, a fact which was driven home at the Vandy Symposium in October, I finally heard "exercise, exercise, exercise....it cures everything." Or something like that. I haven't been worried about my brain power since I am a college professor with a cerebral bent and a partner with an IQ of 240 who challenges everything. Back to the body.  The message from the symposium was clear: exercise is as important as mental stimuli in our battle with the insults of PD. And, to demonstrate that we could all do some activity, our speaker held a session right there. We played volley balloon and did various leg and arm movements.

Once I ran a 10k. I fought fire and ran daily and had exercise equipment at home.  And, when it wasn't used for hanging things on, it was utilized for strength work.  Rats! I wasn't going to discuss the past, but I wanted to put BOOT CAMP into perspective.

Realizing I had to act, I checked out several local gym programs and the Jewish Community Center--none of which we can afford right now.  Then I seriously looked at A&E's new hit, "Heavy." I went to their Face Book page and discovered that everyone else in the world was thinking the same thing: How do I get on the program?   Then, there was a post from a guy who is a personal trainer, has a successful gym program and record to prove it, and has now taken his program online. Crunch Time
is a rigorous 10-week program that challenges any body--young or old.  Its premise is clear: working the core muscles is critical to a fitness program that also includes diet, stretching, other exercises, and weights. It comes with a food diary, a workout diary, and the advice and counsel of personal trainer James.  For the rest of February, the 10-week online price is $60. After research and phone calls with James, I signed up. And I haven't regretted one second of it.  I am not up to the point where I can jump into a workout as fast as a young guy can, and I told him that. We have discussed every aspect of MY PROGRAM and that includes alternative exercises for klutzes who hear "get down on your mat" as "fall and break something."  I have so far talked or emailed with him daily and gotten great tips, personal interest and tweaks to my program, and access to useful videos.

Back to Parkinson's.  Putting my experience and Vanderbilt's expertise together,  I can only try to encourage my readers to jump--or step easily--into a routine.  Since PD plays cruel games with our minds in later stages, exercise is integral to well-balanced program--one that also might help as we get stiffer and our arms don't swing and our faces look expressionless and our voices go silent. I am going to focus religiously on these issues in upcoming blogs and try to combine sound research and exercise tips with personal experience and some humor.  My previous blogs have given some easy-to-perform exercises to start with, and--shamelessly self-promoting those--Getting Into Routine gives some great beginning movements.

As we age...

A glass of water. The new treatment for PD tremors.

 

 

 

 

 

 

 

"As we age...."

If a doctor says that to me one more time.....

Yesterday, I had an emergency appt. with the eye doctor.  Already sick with what's probably the flu, I had a violent attack of flashing light and visual aura on Wednesday while I was driving. I thought something had happened just outside the car. Then I thought there were things IN the car--little black ants and black strings floating like snakes in water. I was on my way to Kroger on a snowy senior day. What hell. I made it to Kroger's wretched parking lot, where I grabbed my glasses to see if there was something wrong with them. No. Then--get this--I reached around the car window and roof to see where the leak was as if some hole in the car would allow ants and snakes to get in, let loose from the heavens on a winter day. Nothing worked. I wanted to go home and crawl under the bed and hide, but we needed things for the animals. So I braved Kroger and ignored the people who stared at me as I waved my hands in front of my left eye to make the aliens go away.

This is the precursor to one hell of a migraine, I thought as I curled up at home. Well, it wasn't. I called the ophthalmologist and made a first-available emergency appointment, but only after I emailed my neurologist and asked if this was Parkinson's related. "No," she responded immediately. "See your eye doctor now."  I saw him at 0745 hours the next morning. I endured a ghastly in-depth eye exam that required anesthetizing and dilating the left eye several times. Initial evaluation showed a severe vision loss in the left eye. All his attempts to immobilize my head for the exam were thwarted by head, neck, and hand tremors.  Immobilize? LOLOL. Is there a funnier word in a Parkinsonian's vocabulary? He actually got exasperated with me, and, while we waited for a new round of eye drops to take effect, he had me drink a glass of water. I almost grabbed my bag to take a Mirapex, but, for some reason, I just didn't. I sat in the dark, drank water, and prayed, and just breathed. Finally, more relaxed, I made it through his last in-depth exam.

"As we age," he began. <Rage>  He described the collapse of viscous gel in the eye ball. That causes floaters, which many people have. Did I mention "as we age"? Most of these annoying spots and occasional lights dissipate on their own.  But, as I age, I got a whopper of a "collapse." Analogous to a 8.0 earthquake, my viscous material erupted into a huge (for an eye) mass of material right in the middle of the eye. This, in turn, cause vision loss, flashing lights, and the appearance of ants, snakes, and alien shapes everywhere I look. What can be done? Nothing. As I age, all this will dissolve slowly....OR it is causing so much stress on the retina that the retina is in imminent danger of tearing or detaching and requiring emergency surgery. So, as I age, I wait and wait and rail against the problem that nothing preventative can be done. No drops or activity limitations will help.

I have turned to poetry, as I age. Just when I was beating myself up over slacking off on my anti-Parkinson's routine, something new and unrelated rears its ugly head. I have inherited the family eye problems. My father's black eyes that disciplined me with a glare and sparkled with love when he was proud of me ultimately betrayed him later in life. This latest thing isn't my only eye problem, but feeling like a time bomb, I have spent my time, as I age, raging against the "dying of the light" (Dylan Thomas).

As we age....