Dan and Hannah and Her Spasmodic Dysphonia Part 9

It’s been three weeks since we returned from Connie Pike’s Voice Rehabilitation Clinic in  Apollo Beach, Florida.   Here is Hannah in her own words:
….since we left Florida I’ve (re)discovered ed a few things.
 
1. Progress/rehab is a slow, steady process….just like ANY rehab.(I remember with my broken leg four years back.) It does not happen overnight, over the weekend, or even in a month’s time. Baby steps. “Patient, gentle persistence,” as my sister said on the phone the other day.  It helps if I remember all of the above when I might be wishing for “grander” progress in such a relatively short time.
 
2.  I’ve been trying to spread my “practice” throughout the day….always try to start the day with 15-20 minutes of whatever (word lists read while balancing on the ball, stretching, breathing, etc.) Connie reminded me that little bits throughout the day are more effective than one or two bigger sessions.  Makes sense to me. Besides, sometimes the “exploration” can be a bit exhausting.
 
3. I find I do a lot of humming of songs in the car.  Kazooing too.  It’s a good use of my time in the car (though I do miss listening to my CDs and NPR!)
 
4. On the way home from FL, I listened to a commencement address by Susan Sandberg (Stanford.) Something she said in it was very helpful to me.
Her husband Dave had died a year prior.  She was confiding to a friend that “she just wanted Dave.”   Her friend reminded her that that option (Plan A) was no longer available. And, that same friend suggested, “Why don’t we just kick the sh*t (sorry!) out of Plan B?”  
I  found myself thinking that my “former voice” was Plan A. I think of this new path I’m on with my voice as “Plan B.”  And, I do plan to do just what Susan’s friend suggested…
         Hoping your plan, whatever it is, and however you are implementing it, is taking you good places – places you may never have otherwise gone before.  love, Hannah
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Dan and Hannah and Her Spasmodic Dysphonia  Part 8

Hannah reflects on her future living with spasmodic dysphonia.

Can’t say that I came home feeling totally hope-full or convinced that “all shall be well” with my voice after my five-day workshop in Apollo Beach, FL. 

BUT!  Beginning with listening to Sheryl Sandberg’s commencement address at the University of California, Berkeley (in the Tampa airport), my hopefull-ness factor rose.

As her friend Phil said, after Sheryl’s husband died just over a year ago, “Plan A is no longer available; let’s kick the shit out of Plan B.”  I’ve decided a “perfect” voice is no longer available as a Plan A, but I’m ready and willing to make the very most of (and kick the s*it out of) Plan B.

Working in the backyard this afternoon – with some of the tools provided at the voice clinic by Connie Pike’s team – I am encouraged and hopeful and realize, yes, it will take time to develop my new voice.  But that’s a gift I have – time.   And, I’ve got companions and cheerleaders along my way.

So, on with Plan B.  Not everyone gets time to implement and enjoy Plan B.     

Lucky me.  Hannah

Dan here.  By the way, here is the link to the Sheryl Sandberg‘s commencement address that Hannah referenced.   Click on Sheryl’s name.   It’s fantastic and well worth your twenty minutes.

Dan and Hannah and Spasmodic Dysphonia Part 7

What did I learn today – Day One of our Apollo Beach Adventure?

…that this will take patience – and discipline.  My “temperament profile” speaks to my need for discipline. I CAN be very disciplined. But, I’m also very good at going on my “Family Circus” (remember that comic strip?) detours.  Robbie (the counselor/consultant who works with Connie) reminded me of something I already know but…need to be reminded of: to make my voice – and the work that it will require – a priority and to do that work early in the day. Then, any further work throughout the day is bonus.

 …that I DO rely on and feel and appreciate companions along my way….those who keep in touch one way or another (texts, emails, notes) remind me of their love and support. I am sustained by that support more than they probably know. How lucky I am to have those companions in Life. They are what, they are who, add value and meaning to Life.

 …that I like to keep in touch with those who provide support, encouragement, love…sustenance.  So, I text, email, write postcards; I write them as much for me as for them. 

 …that Dan is my anchor, my True North. That I feel so lucky to be living Life at his side.

 The anticipatory phase is over…now the reality of work that lies ahead has kicked in. Practice, persistence, patience…will be my mantras. It’s like going on a diet….it’s not just for 6-8 weeks. It’s a lifestyle change that will be required of me. Connie and her team will provide me with the tools I need to make that change. Those I love will provide the support I need to maintain it – with my practice, persistence, and patience.

 

Dan and Hannah and Spasmodic Dysphonia Part 6

Here’s an excerpt from Hannah’s daily journal as the clinic begins.

On the three hour flight, I read 80 pages in Kevin Hancock’s book “Not for Sale.”  It’s the book our good friends Donna and George gave us for Christmas….turns out Kevin (president of Hancock Lumber in Maine) also has spasmodic dysphonia – and has attended the same SD clinic I’m headed for in Apollo Beach, FL.

While reading, I discover the other word I’ve been searching for when people ask me how I’m feeling about going to this 5 day intensive voice rehab clinic with Connie Pike (a speech pathologist who developed SD herself back in 2004.)  Mostly I feel excited and hope-full.  A bit “nervous” I had thought….but that word didn’t feel quite on target. 

Instead, it’s “butterflies” I feel (thank you, Kevin.)  A fluttery feeling; full of uncertainty, yes, but more with an anticipation of good things – possibilities – to come.  Excited, hope-full, filled with butterflies….not a bad way to begin any journey!

Dan and Hannah and Her Spasmodic Dysphonia  Part 5

 

Call me prudent.  Call me cautious.  Call us fortunate.  You be the judge.

Today Hannah and I wake to our iPhone alarms at 4A and are out of the house by 5A for our 955A Jet Blue nonstop flight from Boston’s Logan Airport to Tampa.  We are heading south for Hannah to participate in a five-day intensive voice rehabilitation clinic.  Why leave so early, you may be thinking.   The answers are four.

  1. Traffic to Logan from 5A to 6A is flowing while traffic from 6A to 7A on Route One will be snarled in Danvers, Saugus, and Revere.
  2. Lately there have been a million TSA warnings about the delays at baggage inspection.   Get to the airport three hours early, we are warned.
  3. We park our car with Park, Ride, and Fly USA and must wait for the shuttle to take us to Logan three miles away.
  4. We can wait at the airport just as easily as at home with time for a leisurely Dunkin’ Donuts coffee and a muffin.

Pike D and H and DD selfie

Speaking of Dunkin’ Donut coffee, we raised our “cool” factor from 0 to 0.5 by walking through the airport strutting our stuff while hold our DD coffees.

As we get through the baggage check in at 650A (it took ten minutes tops!), Hannah notices that there is another non-stop Jet Blue flight to Tampa at 759A, two hours before our scheduled flight.

Approaching the young woman at Gate 19, we learn she wants to know if we checked any bags.  Negatory.  We only do carry on.   She tells us that for no charge we can be put on the standby list for the earlier flight.  Hannah beams and already feels like she’s won the lottery.

Wouldn’t you know, we are called and given separate middle seats in the back of the plane for the earlier flight.  Bonanza.  If we hadn’t come to the airport so early, we wouldn’t be winging our way south to Florida’s west coast at 8A.

Another excellent sign that good things are ahead for Hannah at Connie Pike’s clinic for voice rehabilitation!

Fun facts two.

  1. Tampa is roughly below Wooster, Ohio, longitudinally speaking.  It’s where Hannah and I met as 19 year olds at the College of Wooster.
  2. Due to its relative closeness to the equator, Tampa has one hour and ten minutes less daylight today than York, Maine!

 

Pike AB map

Arriving two hours early. we drive our Nissan Sentra from Fox Rent a Car south on I-75 to Apollo Beach, where Connie runs her five-day clinic.   Stopping in at her place hoping to introduce ourselves, or at least find the house where Hannah will begin her five-day clinic, we ring the bell.

Pike Connie

Connie Pike

Connie answers the door.  We introduce ourselves and she welcomes us as old friends.  Immediately, I notice that her voice (Connie has had SD) is strong and sweet, with not a hint of SD-ness.  Wow!

More good karma.

Dan and Hannah and Spasmodic Dysphonia (Part 4)

Connie Pike runs five-day clinics for sufferers of spasmodic dysphonia (SD) four times a year from her offices in Florida.  Calling this past March, Hannah learns that there is a clinic coming up in May.  With only spaces for six people for this intensive workshop, we learn that there is a place for Hannah.

Connie describes her clinic thusly:

Holistic evaluation of voice includes assessment of voice production as well as breathing patterns, neuromuscular dynamics, psycho-social issues, and overall life-style contributions.  

Intensive individual and group treatment includes voice recovery and breathing techniques, neuromuscular treatment and mind/body explorations aimed at finding a new “groove” for the voice.

It also offers an individualized program for continued and maintained long-term improvement.

SD question

Most people with SD have poor breath support and use a lot of effort to produce voice. Easier voice production patterns result when the nervous system is more relaxed, and right-repetitive voice and breathing can result in permanent changes.  

The clinic includes voice analysis and the development of individualized strategies to improve voice production. Video-taping throughout the clinic is transferred to a DVD that further reinforces the program.

The program begins at noon on Wednesday with introductions and assessments. On Thursday, Friday, and Saturday, sessions are from 9A-6P and include individual and group training.  The clinic notebook contains ample material that can be worked through individually. Sunday is primarily group time and re-assessments. Connie provides three hours of follow-up in person, by phone, or SKYPE during the first six months following the clinic. 

Florida sunshine state

Efficacy studies show that 85% of those attending have significant long-term improvement. We commit to each participant the best of what we have to offer to see that “overcoming SD” is accomplished, and that our holistic program meets that goal. 

Say no more.   We are off to Florida next Tuesday.

Dan and Hannah and Spasmodic Dysphonia (Part 3)

Once Hannah reads Connie’s book, Free to Speak: Overcoming Spasmodic Dysphonia, she feels that she has found a kindred spirit.

Connie quotes Joseph Semple (Voice therapy: Clinical studies, 2000) thusly: Imagine developing a condition so insidious that it may cause loss of self-respect and confidence; a disorder so negative as to cause depression, reclusiveness, and thoughts of suicide; a condition that can ruin careers, marriages, and friendships.  This disorder is spasmodic dysphonia.

Whoa, that is a heavy load!

connie's first book free to speak

My take away from my read of Free to Speak is:

The cause of spasmodic dysphonia (SD) is up for debate as it may be neurological or psychological.  Stress may contribute to SD or lead to the chronic nature of the disease.

Botox is the preferred treatment of the medical community.   The American Speech and Hearing Association takes a “no cure” stance and recommends Botox (every three months for the rest of your life).

Connie believes that knowledge of one’s breathing patterns and learning proper breathing techniques can address the symptoms of SD.   Devoted practice and attention to proper voice mechanics under the framework of a holistic and intensive treatment has led to individual success.

While treatment can take six to twelve months, crucial to success is maintaining a positive attitude.  Connie believes her spasmodic dysphonia is 95% resolved.  She can now yell across a number of rooms in her house.  Wouldn’t Hannah love to do that!

The fact that Connie is a trained speech pathologist who knows SD from the inside out, having the condition herself, has me thinking this woman may be on to something that can help Hannah.

map of florida

Connie Pike offers a five day clinic to set into motion the correct mindset, the proper mechanics, and the holistic picture of the disorder that will propel patients into regaining their voice.

With this news, there is literally more hope in Hannah’s voice than ever before.  Connie’s clinic is near Tampa, Florida.   Perhaps a Jet Blue flight to the Sunshine State is in order?

Dan and Hannah and Spasmodic Dysphonia (Part 2)

habitat-for-humanity1

Funny how things fall into place.  Our amigo George Ellis opens a door and Hannah steps in.  You see, George is the 2015 Habitat for Humanity Man of the Year.  His volunteering as a member of a team building houses for those in need has not gone unnoticed.  He’s a humble rock star for Habitat and richly deserving of the recognition.

The night when he received his award, the speaker for the ceremony was one Kevin Hancock.  That’s right, the Kevin Hancock of Hancock Lumber with stores all over southern and central Maine as well as New Hampshire and a generous supporter of Habitat.  And that night, George learned that Kevin Hancock has spasmodic dysphonia (SD), too.

Not for Sale

Kevin’s journey in coming to grips with his SD took him to the reservations for Native Americans in South Dakota.  He wrote a book, Not for Sale, about the experience.

Now back to George.  George and his wife Donna bought Hannah a copy of Not for Sale.   It sat on our shelf for the month of January as Hannah and I traveled to the coast of California to hike its bluffs and mountains.

Upon our return, Hannah checked the book out and found a reference to Connie Pike in the appendix.  It turns out Connie has played a significant role in Kevin’s effectively dealing with his SD.  You see Connie is a speech pathologist who herself has spasmodic dysphonia.  (By the way, later Kevin generously met Hannah for coffee to answer her questions and share his experience with SD.)

SD saying

Connie believed that there had to be alternatives to Botox injections, the preferred treatment of the medical community.  By the way, Botox is injected into the neck of the SD patient with the hope and a prayer that it will give the patient a few weeks of relief from the voice disorder.

connie's first book free to speak

Hannah has tried Botox.  First her voice got worse and never returned to normal for even a few weeks.  She has tried hypno-therapy, acupuncture, acupressure, healing resonance, herbal and nutritional therapies, and a little speech therapy.

Intrigued, Hannah had me order Connie’s book, Free to Speak: Overcoming Spasmodic Dysphonia from Amazon…

Dan and Hannah and Spasmodic Dysphonia (Part 1)

Spasmodic dysphonia (SD) is a voice disorder that makes it difficult for those like Hannah with SD to project their voice, to be easily heard.  She speaks softly and has been dealing with her SD for fourteen years.

Over the years, she has adjusted to its limitations and continues to live a full life as wife, mother, Omi, and friend as well as hairstylist to the elderly.   She is the star of my long running online hiking blog.  Working out regularly at the gym, she spends Tuesdays with me and our grandsons, Owen and Max, plays a mean game of Pickleball, and gets together with friends in twos and threes.

In large groups, she literally loses her voice (i.e., her speaking voice and her identity when her voice is not heard).

But when asked by the speech pathologist what she would do if she were to recover her voice, she tears up and enumerates:

Buck O and M and Omi at Wegman

I could read aloud and sing to our grandchildren without getting light-headed and winded in the first couple of minutes. I could talk to them in the backseat of the car – and be heard from the front seat. 

I could really-really enjoy participating (talking as well as listening) in the few large group parties that we have in our home.  We will still have those parties.

I would like to take back responsibility for my own phone calls – and my part of the phone calls when we talk with the kids and friends on the phone. 

I could/would read my own poetry aloud to others – give it my very own voice – rather than have someone else read it for me. 

My husband does things like calling health insurance companies for me.  I’m still not one who likes to spend time on the phone but when I have to, it would be so cool to have a free-flowing conversation where I’m not always concerned about using the least amount of words – sometimes just to “get the conversation over with.”  Or, having to repeat myself regularly or explain what’s “wrong” with my voice. 

BS5 D and H at tunnel

I could have conversations with my hard of hearing friends/customers (many are because of their age) and know they really understood me – and weren’t just smiling as if they understood.  Which, of course is really sweet.

My husband wouldn’t have to regularly ask me to repeat what I’ve said.

I could order over the counter (e.g., at the deli and at the Subway.)

And then serendipity opens a door to a little hope…