Wachet auf -- the raging Lion

Although I am Jewish, I do love the great Christian choral music of Bach and Handel in particular.  This morning as I lay in repose (see picture above), I heard "WACHET AUF!"  "Sleepers Awake," J.S. Bach commands us in his magnificent cantata.  I wasn't actually asleep, J.S.B., I was thinking about rising up and grading papers or taking a walk before doing anything that demanding.  Conveniently, just as I put my hand on the door knob, the heavens opened up, and I was forced to revert to my first idea--grading the English composition finals, the stack of which was growing taller and taller as I had lain thinking.

For inspiration, I  pulled up Bach on You Tube and, after painstaking and time-consuming (anything to avoid the obvious) analysis, I chose the best version to play. Continuing to avoid work, I then studied the translation and became confused by a verb form that challenged my German fluency.   Having finally worn my OCD self out pursuing distractions, I opened the first student paper on the stack.  It had been written by an older, very mature student. There was a personal note attached to it, and it was about Parkinson's.   He said his grandmother is in stage 5 and he wanted to talk to me and get connected with the Neurology Department at Vanderbilt. So this time I had a valid excuse not to grade papers or take a walk in the rain. I had to write a long overdue blog. After all, first there was the subliminal message telling me to wake up. Then there was there was the lightning bolt in the form of my student's questions.

My student's mention of the stages of PD intrigued me, so I did some research.  My neurologist thinks I have had PD about 10 years, but she also said I was at possibly stage 2. Slow progression?  My fears are well documented in earlier blogs, but I am avoiding the temptation of rattling them off again.  I found an outstanding web site that discusses stages of PD, answers some of our scariest questions, and provides positive information to help us battle PD the best we can.  What did they say at the Vanderbilt Symposium that inspired my first blog Come Run with Me?

EXERCISE.  If they said it once, they said it a thousand times.  So here's the  WebMD site  I am working with right now.  The stages of this thing we have are undeniably worrisome, but living with it is key to our survival, and WebMD site is a gold mine of information.  As I get my pedaling exerciser set up for a morning of activity indoors, I have to conclude with a reference to Vanderbilt's Symposium again.  They have posted the presentations from October's magnificent program. I highly recommend reading these. No, I will exercise professorial privilege and assign them.

For those of you who have walked this path with me, you know I promised exercise and everything proactive I could do.  I have, sadly, slipped.   The season has gotten me down, school has consumed me, and trip preparations have forced me to give our vehicles the tender loving care I am not giving myself or my beautiful partner.   So....won't you join me again?

The lion is now raging and ready to take on the world again.

The aria almost sung

  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 as 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

Sleep

"To sleep, perchance to dream-

ay, there's the rub."

Hamlet (III, i, 65-68)

Last night my partner and I went to another Vanderbilt Neurology presentation on Parkinson's.  This one included free dinner at the hotel where the presentation was given--a nice perk--and yet another chance to meet new Parkinsonians and hear their stories AND grill the doctor giving the talk to the point that the facilitator of the event had to stop the questioning.   This was one I especially wanted to dodge rush hour traffic to make. The physician was my neurologist, Dr. Fenna Phibbs of Vanderbilt, and the topic was 

SLEEP.

I learned I wasn't alone as Dr. Phibbs went through her Power Point slides.  I saw other heads nod and people looking at their significant others when  she got to the "acts goofy at night and tries to kill spouse in bed" part came.  No matter what we do, we're not the only ones who do it, and it's not just PD that causes wild and crazy nights.  But we do share some significant problems, we're more apt to have certain symptoms, we generally take many of the same medications, and we all seemed to struggle with the big question: Is it the medication or the PD?  Empathetically, with great bedside manner and patience, Dr. Phibbs listened to whispered questions from those who have already lost their voices.  

Some Sleep Basics

• As we get older, we need less sleep, BUT we still need 7 hours anyway.
• We should ideally get our sleep in a continuous period--that is not getting up every 2 hours to clean the garage or save the world (my problem).
• Reaching dream stage or REM sleep is critical.
• There are 2 things we do in bed--sleep and have sex. Nothing else should go on there. She calls this good bedroom hygiene. I didn't ask about sleeping with a cat who takes up my entire pillow and gradually forces me down the bed.
• She suggested satin sheets and pajamas to help us move around better in bed. That's for those of us who wake up needing to go to the bathroom, but we're stiff and almost immobile. 
• She also suggested relaxation techniques and music designed for sleeping--not the TV.
• She recommended a sleep study for those of us who have problems, including possible sleep apnea, because everything that happens to us is not necessarily PD.

Parkinson's problems:

• Restless legs. Although people without PD have RLS, it's far more common in people with PD. Possibly 89% of us battle this insomnia-producing annoyance. 
• We often wake up acting out our dreams. Acting out might include accidentally hitting our partners when we are really single-handedly fighting off Romulan attackers in the 24th Century.
• Our meds might be wearing off about bedtime, and we wake up every 2 hours--and she used my words from my appointment the week before here--to take over the world. 
• Our PD and/or the meds may and frequently do cause serious compulsive behavior.  I am the test canary on this one, so I will publicly embarrass myself on my blog as I did last night at the dinner. I spent 24 years on the Fire Department on 24-hour call as a fire and arson investigator. I am accustomed to "getting the alarm" and having to turn out (fire department jargon for getting dressed) without missing a beat. But I retired 8 years ago, yet I still lay my clothes out for rapid response to contemporary crises.  Once up, the compulsive behavior goes amuck. Typically that involves working on classes or this blog, rearranging some cabinet or vanity, and eating...and eating....and eating. 

Conclusions

Dr. Phibbs underscored several times the importance of telling your neurologist about everything. In some cases, the very meds that control our motor symptoms can cause other problems. If the trade off is decreasing our dopamine agonists, then we have to live with increased tremors and worse.  But there are hopeful steps we and our neurologists can work out:

• Often a sleeping pill is prescribed, one that doesn't affect dopamine.  Even those, of course, have to be adjusted--often to lower doses--when sleepiness becomes a problem at the worst possible times during the day.
• Those of us over 50 or 60 generally have other medical problems, and those medications also cause sleep problems. Whether it's depression, cardiovascular problems, arthritis, or diabetes, it is a good idea to get with those other specialists and determine if any other meds can be "tweaked"  or changed.
• Consider a sleep study. Other factors interfere with sleep also.
• Carry a list of medications with us at all times, especially to the ER if we ever need to go.
• EXERCISE--it cures everything.
• And, finally, my personal recommendation: sleep with a cat or cats.

Good Days, Bad Days

Be, the Box Turtle, fails to negotiate a high (for a turtle) and narrow path.  Courtesy Toni McLaughlin

Some days it doesn't pay to venture out.  Some days, we try our hardest, but, instead, we fall on our faces.  The last few days have been difficult.  The Klonopin the neurologist gave me has started doing what other sleep aids did--Ambien, for example, which can make a person somnambulate, take a spin in the car, and strip the 'fridge of every bite of food.  Well, instead of helping me sleep right after taking it,  this stuff did little when I took it, then "rebounded" 12 hours later and almost caused me to fall asleep driving.  After I got home, I then slept, but I already felt like Be above. So I have been resting--camouflaged in my surroundings.

One of my former captains, Tom Mayberry, died of "complications of Parkinson's" the other day. How we hate to hear those words added to an already upsetting death notice. Couldn't they be specific and tell us what specific complications?  Tom was a good man and the kind of captain who trusted a person to do her job if she had proven she was competent. He was my captain on the arson squad. I loved that job; he hated it. So he let me do my job, and, when standard operating procedures called for his presence, he stayed out of my way and let me work, but he always had my back--which is what a person wants on a dark and dangerous night. Captain Thomas Mayberry (Nashville Fire Department, ret.), may your memory be for a blessing.

Depression often accompanies Parkinson's, especially when we feel worsening symptoms.  Yesterday, I don't know which came first.  What I do know is that venturing into the classroom--head out, legs strong and ready to navigate out of the mitzrayim [Hebrew, narrow places] and emerge as the dynamic and charismatic professor my students went on a waiting list to get--led to tremors, doubts, and one student's defiant rudeness.  I  had an uncharacteristic misstep from which I could not recover.  I think of our dopamine problem coupled with depression as dueling banjos for which we take often contraindicated medications. I confided in my fellow teacher, Ray, who has more years of teaching under his belt and who well knows distracting health problems. He gave me that permission I needed to be good to myself and go home......oh, and not worry about calling off two classes.

Soon I start  LSVT LOUD speech therapy for people with Parkinson's and other  conditions. This is a positive step and will require a month of intensive therapy.  Now, at this very moment, I have to do what I promised to do when I started blogging and get my walking stick out and venture out of my safe place into 29-degree weather.  I was starting to give in to worries about speech, swallowing (or not), the dreaded mask, tremors, and the big D.  So here goes. Be's person, Toni, says Be is not hibernating this year, but, fortunately, she doesn't live in this climate, nor does she actually live outdoors; she goes on supervised adventures.  Here goes--for Be, for all of us living with PD, for our significant others who live with this as much as we do, and for my sanity--a walk and a concerted effort to climb back onto my path, however narrow and dangerous it gets.

What's this? A new path? Come, check it out with me.
(Photo courtesy of Toni McLaughlin)

Dinner, Fun, and Learning Things

Well, it wasn't quite a birthday party night before last, but it had recently been someone's birthday, and [brag, hint] it will soon be mine.  But, in its own wonderful way, the Hendersonville Parkinson's dinner gathering was every bit a party. Underscored by immediate friendship and one significant common denominator, the 8 of us who gathered Monday night had fun, made new friends, renewed long lost friendships, and exchanged valuable information for battling Parkinson's [PD].

Basically a recluse,   I am finding that there's nothing better than learning from and laughing with other Parkinsonian's.   I guess I am beginning to confront aging this way. Somehow, I have managed to be the "baby" of all my favorite groups--e.g. Schmoozers at my synagogue, many of the PD groups. Name the group I attend, and I am the only one not quite on Medicare yet.  But , as the PD seems to be taking an ever-so-slight turn for the worse, I now find myself surrounded by beautiful men and women who refuse to let anything get them down.  And what's better than laughter?  One of my new friends accidentally took her husband's PD meds one night instead of her own--hilarious in retrospect since, thank G-d, she's fine now.  My story of throwing orange juice on a table of businessmen at a breakfast buffet is always a hit, even though I was humiliated at the time and embarrassed to ask for help.  I am meeting other klutzes, if you will, who also walk into door jambs and smash their hands into cabinets. More seriously, we talk about fears of dementia and conclude that, based on reality, we're all just fine. But it's scary.  Such worries start creeping in anyway as we age, and, if I can share the story about opening the dishwasher to warm a bowl of soup, then someone else has a tail of worse absent-mindedness to tell.  Then some angel in the group says the fact that we know these are silly and the fact that we worry we are losing it is a good sign. We're just fine.

But then I learned yesterday that my former captain on the Fire Department had died of "complications of Parkinson's Disease." I want to know more.  We are told--and we know all to well--that PD is progressive, but that's not enough.  So one of our goals as a group is to stay in touch with the doctors at Vanderbilt and support their research. One new friend and I discovered we are both insomniacs, so next week we are attending a function where that is the primary topic.  Despite having been started on clonazepam, I am still sleeping only a few hours a night, then zonking out later in the afternoon, often missing a critical dose of yet another med. We're all different in that respect--schedules, meds, dosages, and reactions to them.  There is not one, simple answer to our PD, but it helps to know we aren't alone and that shared information helps us formulate questions for our own doctors.

My exercise routine the last few days has been all about calisthenics. My knees hurt, and my feet feel "shuffly."  Sometimes, I consciously "march" around the house (when nobody is looking) just to practice keeping my feet off the carpet, where I worry my toes will find an invisible objects to trip over.  But someone at our group Monday night described frozen feet where a foot or the feet simply quit moving forwards.  The result of that is a fall.  Perhaps that explains my sideways falls where my left foot simply doesn't get the message that it's supposed to step to the side.  So many questions....... so many resources in a group.  I recommend finding a local PD support and/or information group.  There you will find someone who has walked a mile in your shoes, who perhaps has dumped food all over a carefully set table, who has experience with meds or with brain stimulation surgery, and there you will find a friend with whom you can learn and laugh.

Very soon I start the Lee Silverman method of speech therapy--4 days a week for a month.  This will be quite a rigorous routine, but, if there's any hope I can again scream at my students or start swallowing again, I will do it--and report.  Has anyone else been through this?

Time to lift a dew weights before school. Strength work feels soooooooo good:)

I should fall so gracefully.  In my dreams.  Actually, in my dreams, I battle invading enemy forces from another era, I run fast and hide from those who want to harm me, and I jump like a cat and swing from overhead obstacles like a monkey.  But, in my awake life, I trip over invisible "objects," I lose my balance without warning, and I stumble sideways frantically trying to get the foot that's free across the other as in a ballet move to balance me before I end up on the ground.  I always thought these things happened because I am a klutz, and there's no question the derivation of "klutz."  This delightful Yiddish word was obviously introduced into Yiddish by someone who knew my great-great-great grandmother, Goldie Klutzberg. I came by this naturally. I mean who else ever got on a horse for the first time and fell off the other side?

No wonder, then, that Parkinson's [PD] crept in with a pattern of falls I assumed was klutziness.  But there was a very worrisome difference: I had spent 24 years on the Fire Department, and I had learned to be more careful of my footing--or else.  I was also running regularly and cycling, and my sense of proper footing and balance was better in my 40s than ever before.  But, early into my 50s, I started having tremors.  By 60, other symptoms were there, and THE DIAGNOSIS was Parkinson's. One thing jumped--wrong word here--out of my list of problems was the falling for no reason.  And there were the "almost falls" or staggering and not falling for distances of up to 10 yards.  I had also started

falling over from a standing position.  Most common was catching the toe of my shoe on some invisible "object" on the floor when, in actuality, the floor was perfectly smooth and held absolutely no tripping hazard.  But, when there were tripping hazards, I invariably misjudged them or--as I suspected--they reached up and made me trip.

As cruel fate would have it, my body started this downward spiral about the same time my really old parents started theirs. Then I was working as a fire investigator for the Nashville Fire Department, and it was my job way too often to investigate  fatalities.  We had approximately 25 a year; the very old and the very young were disproportionately represented in that statistic.  Not being comfortable around "the very young," I had made it my mission to take everything I knew about fires (a lot), building construction (a lot), and human behavior in fire (also a lot) and go out into neighborhoods to help save the elderly. What I didn't know was that they weren't afraid of fire--they were afraid of falling.

Now I am the one who is afraid of falling.  So I have developed some of my own tricks to keep that from happening--hopefully. These are my short and simple DOs and DON'Ts:

• Keep exercising your legs so that you can pick your feet up more than usual when stepping over a visible obstacle.  You can even sit in a chair and march, lifting your knees as high as possible. I often walk with an exaggerated step on days I just don't feel right and fear falling the most.
• Walk using your arms for balance. That means swinging them.  If you aren't swinging your arms, consult with a physical therapist who knows PD patients.
• Under no circumstances do 2 things at once. Don't walk back from the mailbox and read the mail at the same time. Don't turn and talk to the person next to you. When you're walking, WALK.
• Never pivot.  We aren't ballet dancers or cats. Stopping and turning on a dime are not in our repertoire of graceful movements.  If you need to turn around quickly, make a circle.
• Walk at a comfortable pace for you, not for those with you. Wear shoes that don't grip surfaces like carpet, decking, or pavement.  If there's a railing, hold it.
• Keep the space you have control over free of obstacles.  Dogs, cats, and children can be taught to respect your fall potential.  All of our animals respond to a firm "MOVE," and I remember that I was taught at a very young age that my Grandmother, who lived with us, fell easily.  I was responsible for removing hazards and knowing what to do if we were alone.
• Door thresholds and weather stripping exist for one purpose only: to trip us. Watch for them, and learn to high step over them.
• Interior and exterior stairs are required by the model codes to be consistent. If someone you love dearly has porch steps whose risers vary from 6" to 8" or worse, tell them they're a hazard and a code violation.  If you want to be nice--don't we all--then just be prepared to make those exaggerated steps.
• If your body and soul are telling you, "this is a bad PD day," then listen.  Pay attention to your inner voice that says "REST TODAY."

And that is exactly what my body is telling me.  Two PD events are on my calendar, and they promise to be interesting and informative.

 

More opportunities and painful realizations

Over the next 2 weeks, Vanderbilt will again offer educational opportunities for health care professionals and patients.  First, is a lunch meeting where the topic will be non-motor problems of Parkinson's Disease (PD) again. The following Monday  will be an evening dinner meeting with a focus on sleep problems.  I think Vandy sent out a notice to every Parkinsonian on their email list, but, as space will be limited, they wanted an RSVP  ASAP.  Greedily--and so I could pass on what I learn--I asked for a spot at both events, even if the Wednesday event meant sending my students to the library so I could cut class and attend the Vandy event. I didn't expect a spot at both, but I got one:).

Yay Vanderbilt. I might even start cheering for your football team. 
These opportunities couldn't have come at a better time, because the past 2 days have seen a rough patch. Honestly, as I sit here licking my wounds, I am convinced my symptoms are getting worse by orders of magnitude.  It must be true that our--at least my--symptoms sundown [get worse at night].  I get tired by late afternoon. Then my legs start this violent flailing. All I can do then is get up and walk. Until last night, I thought it was just my legs, but in bed, I was a 24th Century warrior single-handedly fighting off an army of invading Romulans who were trying to invade my little piece of the  galaxy. Isn't science fiction wonderful? These epic battles will soon be the raw material of my entry into National Novel Writers Month entry, a story where our Parkinson's hero does something utterly  incredible that will bring about peace. Well, that's the plan. Since PD keeps me up all night as it is, I might as well get creative and submit the story of our PD hero into the library of great literature.

I await scheduling at Vanderbilt for speech and swallowing therapy. What can a superhero do if she can't yell?   I do work facial and neck exercises into my weight training. I am learning to yawn loudly and sing Hebrew Nigun [yayaya, babababa] while doing Helena Rubenstein's neck work. But the terrible cough always returns.  I heard from a nurse who works in a nursing home with PD people that the cough is common. It never occurred to me that it was more than Nashville "air."  I am so ready to bring all of these concerns to speech therapists. Not only does losing my voice and coughing cramp my flamboyant style, but my students and my very own dogs take advantage of me when this happens.

Write me and tell me what your experiences are.  Now I head to my yoga mat for a round of floor exercises for vigor, strengthening that's good for our rigid bodies, and mood elevating boost. Jump in with me, PD family

The Best Program on Television

Gabriel Byrne from HBO's "In Treatment"

If you haven't tuned into HBO's In Treatment yet, you are missing the best program ever on television.  The new season started last night.

Don't expect action-packed adventure, violence, or sex. Do expect fascinating insight into the world of a Dr. Paul Weston, a  psychologist, played by the brilliant, Irish actor, Gabriel Byrne (r).  Now just starting its 3rd season,  "In Treatment"  consists of a series on 30-minute, back-to-back episodes, twice a week for seven weeks, that examine the relationship between the complex and troubled Dr. Weston and his clients through the duration of their treatment.

Like Al Pacino, Gabriel Byrne  acts brilliantly just sitting in a chair and having a conversation with someone.  With a range of facial expressions and  perfect timing,  Byrne mesmerizes us  as he struggles with provocative patients and challenging personal problems of his own.

And this season, in the first episode, It appears Dr. Weston might be battling Parkinson's Disease, which killed his father last season. Haunted by the relationship with his father, Paul Weston, in the 1st episode this season, tries to pick up the handset of his office phone, but his hands have started shaking. For an agonizing few seconds, he loses his grip on the phone, drops it, juggles it, then finally regains control and makes his call.

As the season unfolds, we will learn if he indeed has Parkinson's, and much that factors in to one-on-one patient-doctor relationships and how he will manage his disease.  Whatever happens with this character or his patients,  the program is a must watch. And I have to add the personal observation, that it is so very refreshing to watch the critically acclaimed  60-year-old Byrne and find a heart throb with [possible] PD for mature audiences.

But there's that one line from last season--recaped at the beginning of this season--that will always drop kick us into reality: "He [the father] DIED of Parkinson's Disease."  The question of dying FROM Parkinson's VS  dying WITH PD came up at our  Symposium last week. Someone else in the audience sent our panel of doctors a question about seeing in the obituaries [oh no, has it come to that? Are we reading obits now?]  that people are listed as having died from Parkinson's.  Unfortunately, our panel couldn't answer that question to everybody's satisfaction, but they did say there are so many new approaches to managing PD that there's hope and tomorrow is another day.

Let us promise each other to do more that just live until the next day.  We don't know what's ahead, but we do know exercise and humor  relieve stress, keep our complete bodies in motion, and possibly make those meds more effective.

I want to close with  the beautiful words of the beautiful Hebrew prayer, Mi Sheberach, for the healing of our bodies, our souls, and our minds:

May the One who blessed our ancestors --


Patriarchs Abraham, Isaac, and Jacob,


Matriarchs Sarah, Rebecca, Rachel, and Leah --


bless and heal the one who is ill:


________________ son/daughter of ________________ .


May the Holy Blessed One


overflow with compassion upon him/her,


to restore him/her,


to heal him/her,


to strengthen him/her,


to enliven him/her.


The One will send him/her, speedily,


a complete healing --


healing of the soul and healing of the body --


along with all the ill,


among the people of Israel and all humankind,


soon,


speedily,


without delay,


and let us all say:  Amen!


The prayer in Hebrew transliteration
Mi Sheberakh


Avoteinu: Avraham, Yitzhak, v'Yaakov,


v'Imoteinu: Sarah, Rivka, Rachel v'Leah,


Hu yivarekh virapei


et haholeh/haholah _____________ ben/bat ______________


HaKadosh Barukh Hu


yimalei rahamim alav/aleha,


l'hahalimo/l'hahlimah,


u-l'rap'oto/u-l'rap'otah,


l'hahaziko/l'hazikah,


u-l'hay-oto/u-l'hay-otah.


V'yishlah lo/lah bim-hera


r'fuah shlemah,


r'fu-at hanefesh u-r'fu-at hagoof,


b'tokh sh'ar holei Yisrael v’holei yoshvei tevel,


hashta ba'agalah u-vizman kariv,


v'no-mar, Amen!

Visit to Vanderbilt Neurology

Yesterday I saw my neurologist.  In short, the clip above says it all.   All research seems to point in one direction: exercise.   Sometimes I think we Parkinsonians have our own mantra: Tomorrow is another day, so exercise already.  

We all know there's no cure. And we also know what we don't know: the cause. But the reality is, here we are, most of us "seniors," facing the frightening progression of a disease that can rob us of our facial expressions, our mobility, and even our voice.  So I came away from the doctor with a tweaked plan and a renewed commitment to find the most effective body movements for us--even if we can't lace up and run a marathon.

History

If you read yesterday's blog-- Hi Ho to Vandy we go--you know those annoying non-motor symptoms have been causing concern.  Of course, I admit to having been to a lecture on non-movement-related problems with PD and coming away convinced I had all of them.  But, realistically, I had been kvetching  about problems swallowing for 10 months or more.  My primary care physician had previously sent me for a swallow study, which showed problems from the start.  And lately I have been losing my voice, especially after 4 hours of lecturing.  Then there are the frequent hiccups attacks.  And, last but not least by any means, has been terrible insomnia, coupled with nightmares I wake up acting out.  Like some action hero [I was a fireman....duh], I wake up from cataclysmic battles and hit the floor fighting like a great Klingon Warrior.

Plan

Meds:  I finally confessed to my doctor that I had a history of NOT following the timetable for my medication that we had so carefully designed just for my goofy schedule.  I had been sloppy until the Blazing Symposium on Oct. 16th. And, in so many ways, that was a seminal moment for me, especially when one presenter looked across the crowd, glared into my eyes, and reminded us that the brain doesn't like inconsistency. So in the 10 days since that, I have felt much better, because I went back to that schedule.

But I still have difficult nights.  This is reminding me of that phenomenon known as "sundowning," where dementia patients get worse the more the day drags on.   She prescribed a medication to help me sleep more soundly and past my midnight to 3AM insomnia period.   Lack of sleep has caused untold misery around here, and it hasn't helped my rigorous teaching schedule.

Speech Therapy:  I start speech therapy as soon as I can set it up.  Short of giving me the operatic singing voice I always wanted, it should help voice and swallowing problems.  We'll see about the hiccups; they are still a source of puzzlement.

Exercise: I took the position that the best defense is an offense here and told her I was working diligently on the best possible exercise program short of hiring a personal trainer.

Last, but not least, is community and being a part of the larger PD family.  That's the driving force behind this blog.  That and Laughter.   I told her about accidentally shaking a large orange juice all over a table of businessmen  at a breakfast buffet.  If we can share our tears, we can share our laughter.

Ralph, creative consultant and paper grader

So I forge on today.  I face 4 classes of college freshman in a couple of hours. OY. What a generation gap, but I have already started that blog--and a novel!  More on those later.

Hi Ho to Vandy we go!

In less than 8 hours, I see my Vanderbilt neurologist.  I like Vanderbilt Neurology.  The people are friendly, the doctors listen and inspire confidence, and the person who does intake information lets you tell her what your weight is without making you stand on the actual scale.  My type of place.  I have always maintained that physicians could learn from veterinarians, because the latter don't have the advantage of conversation in the (human) vernacular with their patients.  There are times I have gone to the vet and all I could say was, "he's acting funny." From that, a good vet has to be both scientist and mind reader and have the patience to be both while dodging teeth and claws and being hissed at.  So, in part, I want to test my good neuro by hopping up on the table and saying nothing.

To my list of questions... those non-motor symptoms her colleague presented at the Blazing Toward a Cure scare me.  I really, truth be told, want her to look me over and use some noninvasive intuition to diagnose any new problems. I want the determination of Parkinson's to be an exact science where blood work, vitals, and xrays--something quantifiable-- put me in a category with a name and a number and a specific dose of medication.  Pipe dreams.  I was diagnosed originally because of obvious tremors that could have been the result of Essential Tremor or the side effect of an antidepressant. But that diagnosing neurologist "saw something" in my walk and arm movement.  She even laughed when I compared my imbalance to the tricycle episodes on "Laugh In" where the rider hits the tree and just falls over.  That's what I do sans tricycle.  With confidence in her observations, I initially accepted the diagnosis.  Then, every office visit thereafter, she had to answer the same question: "Do I really have PD?" "Yes," is always the answer, and off I would blithely go into lala land to screw up my Sinemet and Mirapex routine.

One of the doctors at the symposium looked across the sea of faces and right into my eyes the way my father used to do when I was about to be punished and said, "The brain likes consistency; it's important to take your medication exactly as prescribed, according to the schedule you and your neurologist worked out." I heard that loud and clear.  I went home and resurrected the schedule, bought a little old lady weekly pill container, and parceled out my meds precisely. Empirical evidence gathered this week suggests that really works. AHA!

But can my doctor just look at me tomorrow and intuit what's going on?  Or will I sit there and talk about getting the hiccups and having trouble swallowing everything except chocolate chip cookie dough ice cream?  I actually have a radiologist's report about my measurable swallowing problem; could that be something else?  What about insomnia?  I sleep about 5 hours a night and maybe 2 in the afternoon. PD related?  What about opening the dishwasher yesterday instead of the microwave oven to heat something? Is my mind going too?

Well, I guess I have generated a list.  I should email my doctor this blog and stay home.  Suggestions readers?  I shall report tomorrow. 

Getting into a Routine

This unseasonably warm weather is making me grumpy. I should live in Washington or Oregon, where it's cool, rainy, and overcast all the time.  Motivate me, O G-d to just walk and take my big walking stick for balance help, also to make me look ferocious. Stray and loose dogs don't bother me, but stray and loose children do....here goes. Goal: easy warm up this time....10-15 minutes which includes an unfriendly hill. I don't recommend this is for an unstable Parkinsonian, which I occasionally am. This is one time it's good to have company and imperative to have a cell phone and a stick or cane or a walker.  A safer alternative is walking or marching in place indoors.  If falling is still a worry there, you might hold on to a stationary object OR do the same motions while seated.

                                           

 I clocked a 33 minute workout that included pedaling with legs and arms at varying intensities.  I took my walking stick and used it to align my arms for stretching, then used resistance bands for barbell curl type raises.  One of my exercise books has instructions for "easing" the aging, arthritic body from a chair to the floor for leg raises and lower body rotations.  THUD. No, that won't work.  My physical therapist told me she feels way better if I do exercises I can do on my bed. It's not firm enough for some, but bent-knee leg raises and lateral leg raises can much more safely be done on a bed, so that getting TO the floor doesn't result in being removed from the floor.

What fascinated me most today was learning about face and larynx exercises and vocal cord routines. When I was in college, the late, great Helena Rubenstein said all women should keep their neck and facial skin tight by doing at least 1-2 sets of these daily:

• Look up at the ceiling or sky. Put your head back as far as you can.  
• Pull your lower jaw towards your upper so you feel neck muscles tighten.
• Open and close your mouth 10 times.
• Good time to put moisturizer on--or give yourself a facial [yes, guys, they make them for you too].

Forty-five years ago it was I learned this little trick.  Has it worked?  A little? Perhaps, but now I realize Helena and I were ahead of our time.  Some people who develop routines for us recommend having a repertoire of facial expressions--sad, angry, laughing.  Like chicken soup, it may not cure what we dread, but it doesn't hurt.

Then there are vocalizations we should practice when we can.  A great singer suggested this, but you will need to understand cat behavior.  At the time I started doing this, I had no idea what awaited me, but I wanted to try some exercises  to warm up my untrained singing voice. "What sounds besides speech can you do?" she asked?  "Imitate something. You have a good speaking voice. Make sounds that aren't talking or singing."  Without thinking, I caterwauled.  First, I sounded like one tomcat, but, then, I raised my voice and introduced a second cat into the fight.   I have read suggestions for audible yawning and saying "aaah" while keeping a hand on the throat--fingers spread--to visualize opening the throat and feeling it.  Given my Hebrew name--Ariel or Lion--I have chosen roaring.  Sometimes it starts as a squeak and ends as a squeak and coughing fit.  But roaring practice is now part of my routine.

Overwhelmed

Wrist bands available through the Michael J. Fox Foundation, (courtesy MHFF)

While researching material on Parkinson', I was overwhelmed by all the depressing information.  You see, the primary neurologist I have been going to said I was in the very early stages and that someone with my intellectual acumen was unlikely to suffer dementia anytime soon.  Is there a connection between staying intellectually active (I teach English at the college level) and warding off the ravages of cognitive dysfunction?  There has been some evidence of this with Alzheimer's, but the diseases are different.  And at the Blazing Toward a Cure symposium, we heard that physical exercise is possibly the single most important variable. My work is cut out for me. 

There are so many facets of this illness to research, and they are my driving force here.  Before last week, I didn't even know about the Parkinson's mask.  One of my new friends Saturday is so deeply terrified of this--the emotionless looking face with little muscle movement, the blank stare, the perfect poker face really.  Is it inevitable that we will eventually get lost behind that?  I am learning some face exercises. Will they help? Are we any closer to the elusive cure or to at least slowing this thing called Parkinson's down?  The first article that came up on my search was  Parkinson's Disease: the Silent Epidemic.  This is a scary read.  It is motivating me to learn everything I can, one day at a time.

Article in hand and in preparation for my Vanderbilt Neurology appointment next week, I researched the many non-motor symptoms of PD.  Swallowing, losing my voice, and hiccups have been huge concerns lately.  I found one government-sponsored study that calls for more research into intractable hiccups and PD and hiccups brought on by taking our regular meds. Or at least that's a workable hypothesis.  Are these problems evidence of my advancing beyond Stage 1 or 2?  Now that the hand tremors are actually better and sticking to a fanatic schedule of medication controls restless legs somewhat, is it possible these non-motor problems are signs of.....gulp.....worsening?

Did I come out of the PD closet to journal my way through years of early PD only to experience the onset of later stages?  OK, enough feeling sorry for myself. This project is about progress--for you and me and all Parkinsonians.  I am committed to research, individual responsibility for this thing we have, and communication about it.  I plan to try all the exercises I am capable of doing, take my meds when I am supposed to, and attend functions with my extended PD family.  So I will share what I learn and hear from others, and I welcome input.

I have to close for the night because I am worn out from my day of exercise and study, but I have to plug our fellow Parkinsonian Michael J. Fox.  If he can ice skate on national television, then try to brush his teeth just to show the range of symptoms one individual deals with, then I can walk on dry land more than I am now.  I am significantly older than he is, but his enthusiasm and dedication are infectious.  Check Michael J. Fox Foundation out. Join Team Fox. Examine the gold mine of resources there, and, should you feel like lending your support, Charity Navigator gives MJFF 4 stars (out of 4 possible).

 Good Night. Sunday is about football and walking. We might even play some balloon ball in the living room.  Go Bears!

I thought she would never get offline and come to bed.

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 amazon.com 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!


Laura 

Exercise

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:

           http://exercise.about.com/cs/exerciseworkouts/a/resistance_band.htm

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.

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)

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.
 

C6H3(OH)2-CH2-C2H2-NH

This is my friend--Dopamine.

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