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.