Shake, Rattle and Roll

Giving a Voice to Parkinson’s

I wondered what the wife of the Parkinson’s group member was thinking as she strained to hear our devastated voices. She attended the Parkinson’s Disease support group on behalf of her husband who was getting cold feet while being evaluated as a Deep Brain Stimulation (DBS) candidate. I was relieved he did not attend because his cold feet might have turned to ice at the meeting.

While I didn't know what she was thinking, I was pondering the question of "How is it that so many of us who have had DBS, have experienced major voice and speech problems?" Our voices are soft, slow and slurred. We stutter and hesitate as we struggle to convert our thoughts into words. While as a group we are intelligent and highly educated, we must sound inarticulate to outsiders.

Not only has Parkinson’s affected my voice, but also DBS and subsequent programming have impacted my voice negatively. Even after 20 sessions of Lee Silverman Voice Treatment (LSVT) since DBS, my voice still has its “on” and “off” moments. Sometimes following the LSVT’s mantra of “thinking loud, clear, and big” is just not enough.

For example, on my recent weekend trip to New York City, I had five full body pat-downs because of the pacemaker to my brain. I quickly became aware of the high security at the airport in Denver, Empire State Building, United Nations Building, Statute of Liberty, and the airport at LaGuardia. My speech became garbled after that trip, possibly because my DBS settings shifted or perhaps because of the stress of having five full body pat-downs.

Meanwhile, at the end of the meeting, the caregiving wife asked for emails from those who experienced benefits from DBS. I could imagine her carefully scrutinizing the incoming emails. “Nothing too scary,” she emphasized, as she stressed communicating by “email, not phone.” She must have been worried about her husband’s cold feet not proceeding down the DBS path.

Plagued By My Voice

Photo of Lauren Bacall

For as long as I remember, my voice has been husky, with a breathy, sexy quality to it like Lauren Bacall's. I only wish I had her sultry good looks.

But now I’m plagued by my voice, which is no longer sexy since Parkinson’s (PD) and Deep Brain Stimulation (DBS). My current voice is frequently hoarse, monotone, quiet with words that are garbled or slurred. Often my voice is so slow and hesitant that despite having two advanced degrees, I sound like I’m mentally retarded. I know that the politically correct term is “developmentally disabled” but right now I’m too PD’ed about my voice to care.

My PD voice worsened since DBS. Due to a possible “spill over” of stimulation into nearby brain regions, I have difficulty moving my jaw and tongue which has translated into poor articulation.

When I speak, it feels as though I’m shouting, while listeners experience it as a whisper. I often don’t answer the phone, make phone calls or venture out when my voice is particularly bad. When I phoned to schedule speech therapy, one of the prospective speech therapists hung up on me thinking I was a crank caller (Needless to say, I didn't choose her as my speech therapist).

I grew tired of my husband Tom asking “WHAAAAAT?” before I even completed my sentence. He had assumed that he wouldn’t be able to understand. A negative communication pattern developed between us that we’ve nipped in the bud by him repeating portions of my message that he heard or understood, and I clarifying parts that he didn’t hear or understand.

When I call my brother on the phone, he calls me back with a phone that amplifies my voice. When my 86 year old aunt called and wanted to talk early one morning, Tom tried to explain that my meds hadn’t taken effect and that I had no voice. Even though I wasn’t on the phone, I heard her respond with “What do you mean that she can’t talk?” There is nothing wrong with my hearing.

And I’m not suggesting that my voice and speech is always like this. Sometimes out of the clear blue, a normal voice inexplicably emerges surprising me and everyone else.

My heart broke when I observed someone with advanced PD mouth the words to her husband, describing her PD voice as “I feel as though I’ve lost my zest.”

Although eighty-nine percent of those with PD experience communication difficulties, only 3-4% of those with PD receive speech therapy. Tomorrow I begin the Lee Silverman Voice Treatment (LSVT) for PD folks with speech and voice problems. I’ve participated in a modified version of LSVT in the past, but tomorrow I start the real deal (four times a week for four weeks). I’m both excited and skeptical, knowing that it’s going to take a lot more than “think loud” to resuscitate my PD voice. I’ll keep you posted.

“You Don’t Look Like You Have Parkinson’s”

Photograph © Hulton Archive/Getty (photographer not credited)
Click on photo for larger image

It happened again last night. My husband, Tom and I had dinner with my accordion buddies. They scrutinized my lack of tremor and dyskinesia. I felt like my meds weren’t working. And then the comment I was waiting for: “You don’t look like you have Parkinson’s.”

Several days earlier, the hospital volunteers focused on me when I attended the holiday party, this time as a hospital volunteer and not a hospital employee. My body was stiff as a wooden solder. Many of these folks had seen me at my worst in the past, and they were astonished by the change for the better in my outward appearance. “You look marvelous,” they exclaimed.

Several weeks ago at my DBS reprogramming session with Dr. Olga, she tweaked the settings on the stimulator. My voice was garbled when I asked her questions. Dr. Olga requested that I walk up and down the hall. She was amazed and commented, “If I looked at only your gait and your legs, I couldn't tell that you have Parkinson’s.”

I graciously accepted their feedback as compliments, as they were intended.

I wondered if “looking as though I don’t have Parkinson’s” should be my goal. If I look like I don’t have Parkinson’s, people expect me to act like I don’t have it. It reminds me of an 11 year old who at 5’10” looks like an 18 year old. People expect him to act like a young adult, not a child.

Parkinson’s is not simply a movement disorder. There are many behavioral aspects that are invisible to outsiders.

Sometimes I will:

Look like I have Parkinson’s to outsiders and feel like I have Parkinson’s on the inside

or

Don’t look like I have Parkinson’s to outsiders and don't feel like I have Parkinson’s on the inside or vice versa.

The bottom line with Parkinson’s is that I never can predict how I look or feel on the inside or appear on the outside.

I hope to have many more experiences of feeling as well on the inside as I look on the outside. Keep those compliments coming!

Related posts on my blog:

What’s a Person to Say

I’m Looking Good

Paving the Path to Gratitude

I know that I should feel grateful throughout the year. Although I frequently feel blessed, I tend to focus on gratitude during the month of November, when Americans observe Thanksgiving.

Sometimes I question what I have to feel grateful for with being diagnosed with Young Onset Parkinson’s Disease (PD) at the age of 46 in 1996. When I get down in the dumps, I usually grab my pen and start writing or more recently with my PD-related handwriting problems, it’s easier for me to type using my computer.

In early November, I received Susan Borkin’s email newsletter, Write Now! A-muse Letter. Susan provided ideas to jump start my attitude of gratitude.

Gratitude List: Set a time each day to list five things for which you are grateful.

1. I am grateful that my PD symptoms have lessened with the reprogramming of my DBS (in other words, it could be worse).

2. I am grateful to have discovered yoga and dance which are complimentary to traditional medicine and help sooth my body and calm my mind.

3. I am grateful to have a supportive husband, Tom, for the past 33 years who encourages me to be all that I can be.

4. I am grateful to be living in a community in Colorado where I feel supported by friends and family.

5. I am grateful to have carved out my new path in retirement.

Blessings: List three blessings of the day followed by what part you played in making this blessing happen.

1. I was acknowledged and supported for my volunteer work in the hospital as a DBS patient and family liaison. I created this rewarding new volunteer position, drafted a position description and jumped the hoops necessary to make it happen.

2. I received an email from a reader of my blog, telling me he is inspired by my writing. In September 2006, I created and developed a blog called Shake, Rattle and Roll: An Insider’s View of Parkinson’s Disease. I persisted even with suffering through the ups and downs of PD, as well as times when I thought I absolutely had nothing more to say about PD.

3. I practiced my new dance routines and am slowly mastering them. I searched to find an appropriate dance class that would accommodate my PD as well as provide a challenge. I was delighted to have found the perfect class for me.

Turn Resentments Upside-Down

When feeling challenged in writing down blessings or listing what you are grateful for, list resentments followed by a benefit or appreciation this situation provided.

I resent being diagnosed with PD at such a young age and being forced to retire because of PD. However, I have benefited by meeting wonderful people along my PD journey and by challenging myself to develop a meaningful life outside the traditional work world.

In addition to feeling happier and more optimistic, doing these exercises over time develops your self-esteem.

I am grateful to you, my blog readers, for helping me pave the path to gratitude.

In gratitude,

Kate

For more information on Susan Borkin, her books and her programs for personal growth and transformation, check out her website at:
http://www.susanborkin.com/

What’s a Person to Say?

My friend, Gayle sent this email in response to my post, I’m Looking Good:

“I liked your piece about "feeling good" or rather "looking good" and that "looking good" doesn't always add up to actually feeling good, and in fact it may be the opposite because of the medication correlation.

Here's a question: With someone with Parkinson's, what's the thing to say? I mean everyone jumps on the looking good thing because they so want the person to look and feel and get better. But as you say it's progressive, so there will be ups and downs but the ultimate progression is down. So then others are kind of denying it. Yet, if people constantly make a big deal of it, aren't they helping the person to ignore it for a little while - or live as normal a life as possible for that period of time?

What do you think if people say you are brave or courageous (which you are)? In some ways if it were me, I'd want to answer; "I don't have much of a choice, you fool!" People just want it all to go away for the PD person and the carepartner. I guess just being empathetic, listening and helping the PD person manage their challenges is the most a friend could do, but you might write a column about this.”

My question to my blog readers with Parkinson’s is: “What’s a person to say?”

Dialoguing with Disease: Part II or Rockyettes not Rockettes

I thought I had reconciled with Parkinson’s (PD) when I posted Dialoguing with Disease. But the saga continues in today’s entry in my journal.

Kate: I woke up this morning, and I felt your presence with my shaky hands. I haven’t noticed that tremor of yours for a while.

PD: Yeah, you haven’t noticed me for a long time! I was trying to get your attention.

Kate: Well, you got it! You had my attention before with the dyskinesia, your involuntary flailing of my arms. But now that the dyskinesia has subsided with the expert programming of Dr. Olga, your tremors returned and woke me this morning out of my sound sleep. What are you trying to say?

PD: I am trying to get you to notice me with my metronome-like, rhythmic tremors. You walk around with your snooty attitude as though I don’t exist.

I overhead you boast to Tom: “When I look at myself in the mirrors at my Broadway dance class, I don’t look or feel like I have PD.” And then you signed up to dance with a group called the Rockyettes* because you always wanted to dance with the Rockettes. And you didn’t tell Ann Kennedy, the leader of the Rockyettes that you had Parkinson’s until after she asked you to join her group.

Kate: That’s all true. I’ve always wanted to dance, and outside of a couple of years of jazz dance lessons during the honeymoon stages of you and me and PD, I haven’t pursued it.

I was always one of those kids who was never good at sports. But now as an adult with PD, I have a different attitude toward fulfilling my dreams. I’ll never be good enough to dance with the Rockettes, but I can still have fun dancing with the Rockyettes. I’m letting go of my perfectionist standards of “having to be good enough” to perform. I’m now enjoying doing what I really want to do, for as long as I am able to do so.

PD: You have a point. I’ve heard that dancing can really help those with PD loosen their stiff joints, improve their balance and increase their overall movement. And just getting out of the house and being a part of a community, can lift your spirits.

Kate: And I only told Ann, the leader AFTER the first class because I was afraid that she wouldn’t allow me to join. Quite the contrary, once I told her about having PD for eleven years, she continued to be supportive of me participating (She must have been desperate for dance members!). In fact, Ann said that she wouldn’t have known that I had PD, but she should have known because her brother also has PD.

PD: As long as Ann knows about you having PD and you are monitored, I guess it’s okay.

Kate: It looks as though “I’m in” as I was measured for my dance costumes. So for now, I’ll pretend you, PD, don’t exist, and I'll keep on dancing.

*Note: The Rockyettes are a Colorado dance troupe of young-at-heart women. They dance and perform to Broadway show tunes and hits from the 40’s and 50’s. Ann Kennedy is their fearless and exuberant leader, who wears multiple hats in her roles as director, choreographer, seamstress and costume designer.

When Talking and Thinking Need to Kick Into Action

I will never forget my husband Tom’s response to one of my long-forgotten questions.

“I don’t wear my feelings on my shirt sleeves,” was his answer to my presumably touchy-feely inquiry when we met 35 years ago. I’ve been fascinated by the differences in male and female communication and problem-solving ever since

The article, Women Talk, Men Think It Out, by Laura Sessions Stepp addresses this important topic. Stepp claims that while males tend to think their way through problems, females tend to talk their way through. I realize that she is stereotyping, but it is mighty interesting stuff.

I recalled a girls-night-out event where we complained about everything from difficult husbands and demanding bosses to defiant children. I remember leaving this event feeling worse than ever. Stepp might have described it as a pity party. It’s the "I wanna be in a mess too" syndrome, known by some therapists as co-rumination.

The article also discusses the following:

• There is distinction between healthy catharsis (venting) and unhealthy rumination, which can become contagious.

• Studies have shown that talking may strengthen female friendships, and women may feel temporarily better.

• While females tend to demonstrate increased anxiety and depression as their friendships become closer, males don’t typically show such symptoms.

• The female brain picks up verbal and nonverbal emotional cues, more quickly than the male brain. Starting at about age 12, girls put feelings into words more efficiently than boys. Women, who tend to over identify with the problems of their friends, can be impacted negatively. It’s called emotional contagion.

• Women develop friends by sharing personal information, while men bond around common interests (I know – another stereotype).

• Women grow up more curious about their inner life and enjoy talking about it. Men, on the other hand, view emotions as a cue to solving problems. They want to move from feeling to action, or make a decision if there is nothing they can do (more stereotypes).

Lesson Learned:
It is important to share our problems. However, talking about our personal problems needs to eventually lead to problem-solving and action. Sometimes talking and thinking are just not enough.

A Bad PD Voice Day

Like Nora Ephron in her book, I Feel Bad About My Neck, I too feel bad about my neck. But I feel just awful about my voice.

Approximately 75-90% of individuals with Parkinson’s Disease (PD) have speech and voice disorders at some time in the course of their disease. PD affects my voice and speech. At times my voice passes for normal, while other times my voice sounds raspy, hoarse, husky, soft, monotone, breathy and/or slurred. I sound like a chain smoker, although I’ve never smoked.

It recently became an issue when I tracked down some lost classmates for our 40th high school reunion. I’ve been able to locate several classmates on the Internet, but also I’ve contacted several people by phone. People have a difficult time understanding me and don’t recognize my voice on the phone. I’ve apologized for my gravelly voice and explained that I have PD.

I often feel as though I am shouting when others hear me as whispering. Often people with PD have difficulty monitoring how loud they are speaking. This is not the result of a change in hearing, but because of changes in the sensory system where the softer voice sounds louder to the speaker with PD than it does to the listener (with or without PD).

Deep Brain Stimulation (DBS) for PD can also worsen one’s voice and speech. However, in my case, my PD voice sounds about the same as before DBS.

Lee Silverman Voice Treatment (LSVT) is the most popular treatment for speech and voice problems of PD patients and focuses on increasing loudness. Although I’ve gone through this program in the past and found it helpful, like anything else, it requires ongoing practice. LSVT has created a DVD of homework exercises to accompany their program. I purchased a copy of the DVD today and once I’ve had a chance to practice with it, I’ll let you know its impact on my voice and speech.

In the meantime, I’m singing along with my Anne Murray CDs with her beautiful alto voice and dream of sounding like her someday.

So if you phone me and I don’t pick up, I’m probably having a bad PD voice day. But hang on long enough to listen to my greeting taped nine years ago during my early stages of PD. I miss that lovely voice of the past.

Dialoguing with Disease

I was delighted to find an old entry in my journal dated March 7, 2004, about eight years into my diagnosis of Parkinson’s. It illustrates the healing value of having a written dialogue with one’s body.

Kate: Parkie, we need to talk. I’ve been avoiding you for a long time.

Parkie: What’s going on?

Kate: I can feel your progression. In the past, you stayed in one place for a long time. Now you seem like you are in a race to catch up. And I think you are winning.

Parkie: What do you mean by winning? I travel at my natural pace–sometimes I'm slow, sometimes I standstill, and sometimes I make tracks.

Kate: I’m angry that you came into my life. Everything was just fine until you arrived.

My finger dexterity sucks. How can I play the accordion when I never know if you are going to sneak in? I hate being so shaky.

I’m mad that dystonia is curling my toes and cramping both of my feet in the morning.

I want you out of my life, yet I know that I can’t get rid of you.

Parkie: You can’t banish me. There has been no cure to eliminate me. You’re just going to have to learn how to live with me.

And so on…

For other great journal-writing ideas, check out the books of Susan Borkin and Kathleen Adams (below).

My Favorite Journal-Writing Books:

When Your Heart Speaks, Take Good Notes: The Healing Power of Writing
by Susan Borkin

Writing From the Inside Out: Using a Journal for Personal Growth & Transformation
by Susan Borkin

Journal to the Self: Twenty-Two Paths to Personal Growth - Open the Door to Self-Understanding by Reading, Writing, and Creating a Journal of Your Life
by Kathleen Adams

Walk or Talk

I cringed when I heard someone say, “You can walk or talk with DBS.” DBS referred to Deep Brain Stimulation surgery for Parkinson’s Disease (PD). I wondered if it was a cruel joke, making light of PD and such serious brain surgery.

Perhaps I’m greedy, but I’d prefer to walk and talk with DBS. So does Pam Gehrts.

Pam is too humble to tell her story, but generously gave me permission to share it with you. Pam doesn’t consider herself a PD hero because “we're all going through the same thing” on parallel PD paths. However, I personally don’t believe that the number of PD heroes is limited but is infinite. We are all trying to make a difference in this world, fighting the good fight, while living with this debilitating disease.

***

Pam’s Story

“I’ve had Parkinson’s Disease (PD) for sixteen years – since age 35. I’m now 51 years old. Needless to say, I’m a “young on-setter” (Young Onset Parkinson Disease - YOPD). Due to PD, I was forced to retire from my career as an urban planner about ten years ago. When my PD symptoms began, I had two young children, ages 7 and 3, and I had just started my own urban planning consulting firm. I had the credentials (a Master’s Degree) and extensive work experience to be on my way to the “good life” – then PD hit and everything changed.

For the first five years, I was in denial. I didn’t take any PD drugs and persevered in spite of this insidious disease. Naively, I thought no one noticed my tremors and slow movement. Finally, everything caught up with me, and I started taking the PD drug Sinemet. Sinemet got me through the next four years but there are horrible side effects to this drug - dreaded “dyskinesias” (uncontrollable body movements). From that point on I went down hill fast. I had extreme pain from dystonia (muscle spasms and rigidity) in my legs. I lost over 40 pounds from the constant and violent dyskinestic movements.

In spite of my loving family and supportive husband, the daily physical pain from PD was unbearable and at age 48, life was not worth living anymore.

Deep Brain Stimulation (DBS)

On December 22, 2003, I had bilateral Deep Brain Stimulation (DBS) surgery at the University of California in San Francisco. During this 11-hour brain surgery, two pacemakers were implanted in my chest and wires were run under my skin, up my neck into to holes in my skull.

Although DBS was not a cure, it gave me back much of my life. I no longer have the unbearable leg pain and the dyskinesias are gone. I still have mobility issues with walking and balance, but in the scheme of things, these problems are a small price to pay for the temporary relief from the terrible physical pain and disability of PD.

But alas, no PD treatment is without its side effects. Due to the DBS, I now have slurred and delayed speech. I’ve given up ordering Chinese food over the phone or calling motels to make reservations. I usually get hung up on because they think I’m drunk. (I seem to have the most trouble being understood by nonnative speakers). “Getting the words out” is an exhausting experience because my lips are so tight over my teeth. By the end of the day, I feel tired, frustrated and misunderstood. I tried conventional and LSVT (Lee Silverman Voice Therapy) speech therapy. But, voice volume is not my problem – my problem lies with the DBS stimulating the area of the brain that coordinates the muscles that control speech. I know this is true because when I turn off my DBS my normal speech returns in several hours. Unfortunately, the PD symptoms also return and I must turn on the DBS again.

Before my surgery, I had been homebound for several years and was visited on a weekly basis by a wonderful volunteer from the Friendly Visitor’s Program. Once I had my DBS surgery, I no longer fit the program’s criteria and I ‘graduated’. During my pre-DBS years of physical pain and debilitation, I always said that, “If I can ever function again as a person without extreme pain and disability, I want to volunteer my time and share 'the lessons' that I have learned.” My wish came true and I learned about a wonderful disability awareness group called A Touch of Understanding (www.touchofunderstanding.org) started by Leslie DeDora.

A Touch of Understanding (ATOU)

ATOU’s talented and compassionate volunteers go into Sacramento-area schools and share the message that disabled people are just like everyone else. Disabled people like to have friends, they like to go places, they have family and pets, and most importantly, WE have feelings and souls. The kids hear the message that by choosing to be kind to all people – even those with disabilities- the world is a better place for everyone.

The three-hour ATOU program consists of two parts – in one part, the kids are introduced to a hands-on activities which allow them “to walk in the shoes” of a disabled person. There is the mirror station (which replicates the experience of having a learning disability); the Braille station where kids learn how to write their names in Braille; the prosthetic station; the wheelchair station, and the white cane station. The second part of the program consists of disabled speakers sharing their stories. Some of the speakers were born with their disability and others became disabled due to an accident or a disease.

ATOU has given me the opportunity to share my story with the kids – YEAH, my wish has come true! I have always found the kids to be empathetic, curious and supportive. After my talk, it is so rewarding to see the warmth and the twinkle in the kid’s eyes that clearly conveys, “Ah...now I understand …”

Although I have been an ATOU volunteer for almost three years, it has become increasingly difficult because of my speech and voice difficulties. For the past two years, due to DBS-related speech problems, I have been unable to be a speaker for this program. However, on February 23, 2007, I turned off my DBS so I could present "my story" to twenty-nine sixth graders. I have never turned off my DBS before as it was too scary. I turned off my DBS at 8:30 AM and spoke to the students from 9:45 AM to 10:15 AM. My speech was clear and it got clearer as the day progressed. I had to turn the DBS back on at 3:30 PM due to the return of debilitating PD symptoms. Within an hour of turning my DBS on, my speech reverted back to slurring with the tight lips and throat. This was a very interesting DBS/speech experiment.

I touched one little girl so much during my presentation that she cried. She left the room to compose herself and after the speakers finished and we asked for questions, she said, "It's not a question, it's a comment. I want to thank you all for coming. You are all my heroes." The teacher then told us that during the time she went out of the classroom to compose herself, this sixth grade girl committed to becoming a neurosurgeon when she grows up.

Because of my ongoing speech and voice difficulties, I recently consulted with the same neurosurgeon who performed my first DBS surgery. He has agreed to perform a second DBS surgery on April 10, 2007. He hopes to move the electrodes to a place in the brain that allows me to speak and doesn’t compromise my mobility.”

***

Although Pam doesn’t consider herself a hero, I consider her one. I look forward to her walking and talking with ease and spreading her message of hope and inspiration.

Reveal Instead of Conceal

After I sent my positive customer service letter (see my posting “Kindness of Strangers” on September 28), I expected the call from the local branch of the Wells Fargo Bank The call came yesterday. “It is so gratifying to receive such a letter. Thank you for taking the time to write it,” the bank manager said, her voice choked with emotion. She continued: “I will make sure that the employee is recognized, and your letter will be included in her personnel file.”

It happened every time that I sent such a letter to the car rental agency, bank, airline, doctor, teacher or whoever provided good customer service. So accustomed to receiving letters of complaint, many said that this was the first letter of appreciation that they had ever received – in their entire careers.

I also reaped many benefits from sending such a letter. In addition to receiving ongoing good customer service, this particular exchange gave me the opportunity to inform and educate people about having Parkinson’s Disease (PD).

This is a new mission for me – that of informing and educating about PD. I am motivated by the quote of Johann Friedrich Von Schiller: “It is wise to disclose what cannot be concealed.” Since most of the time I can no longer conceal having PD, it is wise to disclose it.

For the seven years during the honeymoon stage of PD when the meds were working most of the time, denial was my motto. When I often passed as healthy, or so I thought, my magical thinking went like this: If I didn’t talk and think about PD, then I didn’t really have it. So I pretended.

The problem with denial was that it required secrecy, which led to deception. I told some people and not others about my PD secret. I didn’t want to be pitied, judged or people to lower their expectations of me. I didn’t want people to scrutinize me and look for my worsening PD symptoms.

However, when I overheard rumors that I had multiple sclerosis, it was time to come clean. It was time to be honest.

When PD was no longer a taboo subject for me, reveal instead of conceal became my new philosophy. And what a relief it has been for me to live a life of openness without secrets.