Shake, Rattle and Roll

In Gratitude

Author Unknown 

The 92-year-old, petite, well-poised and proud lady, who is fully dressed each morning by eight o’clock, with her hair fashionably coiffed and makeup perfectly applied, even though she is legally blind, moved in to a nursing home today. Her husband of 70 years recently passed away, making the move necessary.

After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready. As she maneuvered her walker to the elevator, it provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window.

“I love it,” she stated with the enthusiasm of an 8-year-old having just been presented with a new puppy.

“Mrs. Jones, you haven’t seen the room. Just wait.”

“That doesn’t have anything to do with it,” she replied.

"Happiness is something you decide on ahead of time. Whether i like my room or not doesn't depend on how the furniture is arranged, it's how I arrange my mind. I already decided to love it.

It's a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed  and be thankful for the ones that do. Each day is a gift, and as long as my eyes open, I'll focus on the new day and all the happy memories I've stored away, just for this time in my life.

Old age is like a bank account. You withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories.”

Thank you for your part in filling my memory bank. I am still depositing. Remember the five simple rules to be happy:

1. Free your heart from hatred.
2. Free your mind from worries.
3. Live simply.
4. Give more.
5. Expect less.

 

Gratitude: A Memory of the Heart

Instead of comparing our lot with that of those who are more fortunate than we are, we should compare it with the lot of the great majority of our fellow men. It then appears that we are among the privileged.   Helen Keller

 

I COMPARE myself with people who are more fortunate, taller, leaner, smarter, healthier, prettier, more talented and those who are better speakers, writers, athletes, musicians, singers, and the list goes on. I’m GUILTY of these charges. When I get stuck in a place of jealousy and envy, I need to reflect on my blessings. I start by keeping a gratitude journal of the little and big joys while living with Parkinson’s Disease (PD) with Deep Brain Stimulation (DBS). To begin…

I am GRATEFUL to my husband, Tom, for sharing our lives together for more than 40 years and for his patience and sense of adventure while on my PD path.

I am APPRECIATIVE of my brother, Tom, and my sisters, Pat and Denise, who really “get” this PD and DBS stuff. They allow me to express whatever I feel at the moment, and I don’t have to sugar-coat PD and DBS when I’m talking to them.

I am BLESSED to have Donna Miller, as my business partner who volunteers with me and works with individuals and families with DBS. She brings passion and energy to every person and situation she encounters.

I am FORTUNATE that Valerie Graham, the co-founder of the DBS Voices of the Rockies, is in my life. Her gifts are her compassion and sensitivity relating to those in need, combined with her tenacity in getting the job done.

I’m LUCKY to have found a kindred spirit in my friendship with Mary Spremulli. As a speech and voice therapist, Mary has helped me to improve my speech and voice, and as a friend she has provided guidance, support and hope.

I feel HONORED to have met so many people in the Parkinson’s and DBS communities who have impacted me personally—those living with PD and DBS, the wonderful DBS medical teams in the Denver area, and those allied professionals providing speech, physical and occupational therapy who are often overlooked.

And finally, I THANK my dear readers, who are supportive of my writing and who allow me to do what I love doing and trust me by sharing their personal struggles along the way.

Happy  Thanksgiving—Thursday, November 26, 2015

 

 

 

 

 

 

My Gratitude Adjustment

 

Gratitude has never come easily to me. However, with the observance of American Thanksgiving tomorrow, I am prompted to reflect on the topic of gratitude.

“Gratitude is the inward feeling of kindness received. Thankfulness is the natural impulse to express that feeling. Thanksgiving is the following of that impulse.” Henry Van Dyke

As a lifelong perfectionist and control freak, I tended to disregard my feelings of kindness and overlooked the expression of gratitude. I felt that I could only be grateful when things were perfect in my life. But with the diagnosis of Parkinson’s Disease (PD), things never will be perfect, and there is only so much I can do to control some of my PD symptoms.

While I’ve never been grateful for being diagnosed with PD, I had taken for granted the people and experiences that I had while walking down my PD path. I needed a gratitude adjustment.

I started a Gratitude Journal. Some of the blessings that I recorded include:

I am grateful for the love and companionship of my husband, Tom, over the past 39 years of marriage.

I am grateful for the camaraderie and the sharing within our Bionic Brigade DBS (Deep Brain Stimulation) Support Group.

I am grateful to family and friends who accept me with PD and provide encouragement and enjoyment.

I am grateful for the medical and allied health care communities who provide competent and compassionate care.

I am grateful to be a dancer with the Rockyettes. They always make me smile and bring a spring to my step.

I am grateful to the readers of my blog, Shake, Rattle and Roll, who allow me to share my ideas and validate that I’ve found my niche as a voice for those with PD.

Happy Thanksgiving.

With heartfelt thanks and warmest wishes,

Kate Kelsall

Shake, Rattle and Roll

Are You Afraid of Those Embarrassing Tears?

Several people from our Deep Brain Stimulation (DBS) support group approached me and expressed concerns about their expressions of “inappropriate” crying or tearfulness that did not coincide with their current mood. One woman said she found herself in tears when observing high school cheerleaders forming a pyramid. Coincidentally this woman was a high school cheerleader nearly 40 years ago. One man said that he had never been a crier until after DBS, and now he cries at happy or sad events, and that he often doesn’t know what triggers it. A few indicated that they become tearful when sharing their DBS stories.

Currently, I also find myself frequently tearful or crying at happy movies, sad movies, when receiving a compliment, when I see a cute baby, a beautiful sunrise, or for unknown reasons. I describe myself as “sentimental” since DBS. I figured it might be related to 15 years of repressed emotions while practicing as a Certified Public Accountant prior to my diagnosis of Parkinson's. In those years, I was proud that I never shed a tear in the line of duty.

Neuropsychologist, Paul Short, PhD, proposes that you ask yourself the following questions if you suspect that you may have a problem:

Do you sometimes find yourself crying in response to insignificant incidents?

Is the tendency to weep easily something that is new and uncharacteristic of you?

Is the tearful response uncontrollable and disproportionate to the event that set it off?

Does this crying occur when you were not feeling sad or depressed?

Is the outburst sometimes incongruent with the event that set it off, such as crying when one hears a funny joke or the converse such as inappropriate laughing when feeling sad or stressed?

Dr. Short indicated that if you answered yes to any of these questions, you may be experiencing a neurological phenomenon called Involuntary Emotional Expression Disorder (IEED) (also known as Pseudobulbar Affect (PBA) or Emotional Incontinence).

In my research of this topic, IEED is described as a condition when a person experiences uncontrollable episodes of emotional expression including crying, laughter or anger that doesn’t coincide with their present mood. The unpredictability of episodes of IEED can take an emotional toll, causing a person to avoid interacting with others, and it can be socially isolating and socially embarrassing if these episodes occur at inopportune times.

The crying episodes are different from the episodes of depression. With depression, people often lose interest in formerly enjoyed activities and frequently develop changes in sleep and appetite patterns. Depression can be all encompassing, particularly if untreated; however, with IEED, the episodes are unpredictable, short lived and intermittent.

IEDD is another one of those “non-motor” symptoms of Parkinson’s that isn't discussed. IEED is often present in patients with neurological disorders, with about 4%-15% of those with Parkinson’s experiencing this condition. I suspect that the percentage is higher for post-DBS patients, but I haven’t found any research to substantiate this. IEED is often under-diagnosed, as sometimes the symptoms mimic other clinical emotional disorders such as depression or bipolar disorder.

For many patients, IEED can be treated medically with Nuedexta. However, little or no testing of this drug has been done with Parkinson’s patients, and it may interact adversely with their current medications.

As for myself, I am carefully choosing my PD battles, and I am also reluctant to take an additional medication. I’m going to “learn to live with it” as I continue to describe myself as “sentimental,” which is not the worst label in the world that I could have.

References:

Why Do I Cry? by Paul Short, PhD

April 14, 2011

http://www.youngparkinsons.org/blog/why-do-i-cry

 

A Flood of Emotions by Debra Gordon, M.S.

Neurology Now

February-March 2012 - Volume 8 - Issue 1 - p 26–29

http://journals.lww.com/neurologynow/Fulltext/2012/08010/A_Flood_of_Emotions__Treating_the_uncontrollable.19.aspx

The "Why" Questions

Living with Parkinson ‘s Disease (PD) and Deep Brain Stimulation (DBS), I’ve often asked myself the question, “Why me?”

Mary Spremulli addressed this issue in her insightful article "Why Me?" Might Be a Question for Good Times and Bad When Living from the Heart at: http://voiceaerobicsdvd.blogspot.com/2012/12/whyme-might-be-question-for-good-times.html

More recently, I’ve also added the following questions:

"Why not me?"

“Why her or him?”

“Why not her or him?”

“Why this?”

“Why now?”

Living with PD and DBS is a mixed bag. It results in a lot of grumbling on my part about the negative aspects of the disease and the surgery. I complain about my devastated voice caused by PD and DBS. I frequently “why me” about being diagnosed with PD at the age of 46 nearly 17 years ago. I bemoan the loss of my “real” (e.g., paid) job and professional career. I whine about the extreme movement or the lack of movement caused by this movement disorder.

In the past, I’ve ruminated about the problems that I’ve experienced as a result of PD and DBS. However, in moving forward, I am challenging myself to ask the same “why” questions about the blessings in my life that have occurred as a result of living with PD and DBS. Blessings include making new friends like Mary Spremulli and the reward of gratifying work with my friend and colleague, Valerie Graham, in assisting individuals and their families as volunteers at hospitals and through the Bionic Brigade (Denver’s DBS support group).

To help rethink the circumstances of our lives, ask the “why” questions about the good, the bad, and the ugly aspects of living with PD and DBS. When we’re able to use whatever difficulties we’ve experienced to help others, then all of our suffering and struggles are elevated to a higher level beyond ourselves. This just may lead us down the road to meaningful and purposeful lives.

 

And on the lighter side:

 “When his life was ruined, his family killed, his farm destroyed, Job
knelt down on the ground and yelled up to the heavens, "Why god? Why
me?" and the thundering voice of God answered, There's just something
about you that pisses me off.” ― Stephen King

“Sometimes I lie awake at night and ask why me? Then a voice answers nothing
personal, your name just happened to come up.” ― Charles M. Schulz

It’s Time to Share Your Secret about Parkinson’s

 Everybody's got a secret, Sonny

Something they just can't face

Some folks spend their whole lives trying to keep it

They carry it with them every step that they take

'Till some day they just cut it loose

Cut it loose or let it drag 'em down ...

 From: "Darkness On the Edge of Town" by Bruce Springsteen

When I was diagnosed with Parkinson’s Disease (PD) 16 years ago, at first I only told my husband, mother, brothers and sisters. Throughout the years, I gradually told a few more close friends, colleagues and a few relatives.  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.

I scheduled my neurology appointments at 7:30 AM before work so that I could avoid the shaky folks in the waiting room. When my hand shook at work, I would put it in my pocket. When people would ask me about illness, my response was frequently "I don't want to talk about it."

When my PD meds were working, denial was my motto. When I often passed as healthy, or so I thought, my magical thinking went like this: If I don’t talk and think about PD, then I don’t really have it. So I pretended.

The problem with denial was that it required secrecy. For nearly a decade, I kept my PD shrouded in secrecy. It was my secret.

By the time that PD had progressed to the point that I required DBS surgery, I found it necessary to disclose what I could no longer conceal. Concealment had become as stressful as the disease itself. 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.

Related Article:

Keeping Parkinson's Disease a Secret at:

http://well.blogs.nytimes.com/2012/07/09/keeping-parkinsons-disease-a-secret/ 

Getting Better Every Day

“Today, I am better than I'll ever be again.” I was jolted when I read Diane Marty’s statement in her inspirational story about her diagnosis of Parkinson’s, Choices, at http://katekelsall.typepad.com/my_weblog/2012/02/choices.html

I would have made the same statement in my earlier stages of Parkinson’s, but after nearly sixteen years of living with Parkinson’s, I respectfully disagree.

A friend of mine with Parkinson’s said that her neurologist said she was better at her current appointment than she was at her previous appointment. The same friend thought that she might be getting better every day with Parkinson’s.

Although no one would probably state that I was getting better every day with Parkinson’s, I’ve been struck with how many times those from my earlier Parkinson’s days have said how “great” I now looked. Did they mean that I looked terrible before and now looked presentable? Some have gone as far as to say that “you look like you don’t have Parkinson's.” Initially, I felt misunderstood when receiving such comments, but now I gratefully accept these as compliments as they were intended.

It also confuses me that sometimes I can look good on the outside when I feel sick on the inside, due to my on/off medication/stimulation fluctuations. Equally confounding are times when I can move with ease, yet simultanneously my speech and voice are weak or slurred, or vice versa, when my movements are slow and stiff, yet my speech and voice are strong and clear.

Without a cure for Parkinson’s on the near horizon and with progression of the disease, I continue to ponder if it’s possible to get better with Parkinson’s. I believe that I am currently functioning “better” due to a supportive husband, family and friends, fine neurological care, medications, Deep Brain Stimulation and competent programming, exercise, yoga, dancing, massage therapy, acupuncture, traveling, volunteering, blogging, a positive mentally attitude, and likely a plethora of other factors.

Now when people ask me how I’m feeling, I'm going to change my response to “I am getting better every day."  Call it stubbornness, denial or delusional thinking, I am unwilling to resign myself to “this is as good as it gets for me living with Parkinson’s and Deep Brain Stimulation.”

Making Peace with Parkinson’s

I personally don’t like New Year’s resolutions. I've had a long history of making them and breaking them. Instead of resolutions and goals, I prefer creating a theme for the upcoming year. My theme for 2012 is Making Peace with Parkinson’s.

In a brief ah-ha moment, I realized that I’ve experienced many feelings about living with Parkinson's during the past 15 years. I’ve denied having PD, attempted to keep it in the closet and covered up, been angry and frustrated with it, mocked it, battled it, feared it, been terrified of it, been depressed about it, been embarrassed and shamed by it and been anxious and worried about it. But…I’ve NEVER accepted or made peace with Parkinson's.

The Serenity Prayer will be my guide on my path in learning how to make peace with Parkinson’s. I look forward to experiencing many moments of peace and inner serenity as a result of this journey.

Celebrate the Year of Making Peace with Parkinson's.

 

Back to the Basics

When I worked  in my high-powered  career  as a Certified Public Accountant, I frequently set goals at year end.  My focus was on goals that were specific, measureable with exact deadlines, and that would lead to progress up the corporate ladder.

It seems like a lifetime ago.

Living with Parkinson’s for more than 15 years has forced me to become more flexible in my goal-setting or rather my lack of goal setting. My  goals now are quite basic: get up in the morning when I can maneuver my body out of bed, take my Parkinson’s meds every three hours during the day, walk the dog when my legs can move, respond to my email when my fingers can type, do errands when my PD meds are working, respond to telephone calls when my voice has some strength. work on my book when my brain is functioning, dance and do yoga when I have some rhythm, and prepare meals when my hands are not too shaky.

My day-to-day activities currently hinge on how my Parkinson’s body and brain are working. But lately, as my Parkinson’s progresses, my body and brain have become so  unpredictable.  For example, if my voice seems  strong during  the first five minutes of a conversation, it doesn’t mean that it won’t turn weak in the sixth minute. Or when I function well with movement, I generally don’t speak well and vice versa. I know I’m greedy. I want it all—to both walk and talk and simultaneously—imagine that!

Sure, I frequently push myself beyond the basics,  and I’m glad that I still have the perseverance to do so.

So I won’t be staying up late tonight making a list of my goals with deadlines. More likely, my husband and I will fall asleep watching TV at 9:00 PM and set the alarm for midnight so we can welcome the new year.

Happy New Year!

 

It Consumed Me

Parkinson’s was in my thoughts and body 24/7. I allowed it to take over and become my identity. It moved in, took up residence and became a roommate that I couldn’t seem to evict. It turned my life off kilter, and I felt incapable of restoring balance. I became a one-dimensional, boring person, preoccupied with it, thinking about it, talking about it, listening to it, and studying it.

I had enough of it and was determined to find some possible solutions to deal with it. I developed the following strategies:

Remind myself that I am not my disease.

Don’t label or define myself by Parkinson’s. Words are powerful and calling myself or others “Parkies” even in jest, can be minimizing.

Focus on what I can do with Parkinson’s instead of what I can’t do.

Hang out with people who don’t have Parkinson’s.

When introducing myself to a new person, describe myself in ways that don’t involve Parkinson’s or its symptoms. Don’t allow Parkinson’s to be high on my list of how I describe myself because it may prevent more valuable qualities and traits from emerging.

Allow myself a set period of 15 minutes every day to think about, stew about or worry about Parkinson’s.

Establish Parkinson’s-free times when I don’t speak about Parkinson’s.

Go on a vacation and leave Parkinson’s at home.

Be selective when choosing volunteer activities. Learn to become comfortable saying “no” to activities that don’t enhance my life and choose activities that match my values and interests.

Lead a healthy life by attending to all of my needs – physical, emotional, intellectual, relationship and spiritual.

Although this self-improvement program is a life-long process, these strategies will help me to live well with Parkinson’s instead of being consumed by it.

A Personality Plus Wannabe

Growing up, I was a Personality Plus Wannabe. When my aunts described someone as having Personality Plus, it was a sincere compliment which meant that the person shined and glowed in social situations. In childhood, I had not acquired the social skills to be a Personality Plus.

At age 8, my parents and relatives said that I had the brains and that my brother had the personality. We interpreted this as I had no personality and my brother had no brains.

My friend, Diane Marty, who didn’t know me at age 8 and who I met at age 60, disputes the above: “Well, they were infinitely, unarguably, outrageously wrong -- on your account anyhow. I can't say anything about your brother, not knowing him. But if they are as wrong about him as they are about you, he is an Einstein.”

Thanks, Diane, for your much-needed compliment.

At age 9, I played in monthly accordion recitals at Quigley Music Studios in Kansas City. Suffering from a severe case of stage fright, with sweaty hands and a terrified grin on my face, I stood up and played “Parade of the Wooden Soldiers” on my heavy 120 bass accordion which was almost as long as I was tall. The evaluator’s comment on the 3 x 5 note card was “Her personality really projects, doesn’t it?” I wondered if he was describing my anxious personality or what other personality traits he observed.

In 1959 at age 10, the song “Personality" reached #2 for Lloyd Price. I remember him crooning:

 'Cause you got personality

 Walk, personality

 Talk, personality,

 Smile, personality

 Charm, personality

 Love, personality

 And of course you've got

 A great big heart

 So over and over

 Oh, I'll be a fool to you

 Now over and over

 What more can I do?

At age 17, I overheard one of my aunts describe me as a “diamond in the rough.” Although she was well-intentioned, I always wondered if she meant that I had potential to be a Personality Plus girl.

From age 18 through age 60, I honestly don’t recall thinking much about personality –- what it was, whether I had any, or what kind of personality I had. Then on my 61^st birthday, the personality issue once again surfaced.

After attending the World Parkinson Congress in Scotland, Joyce and Jim, my Scottish friends (who Tom and I met when we lived in Calgary, Alberta, Canada) took Valerie and me out for a beautiful day of touring the Scottish countryside. Over a delicious birthday lunch at Loch Lomond, we reminisced about our wonderful Canadian experiences. I was stunned when they described me in the past with words and phrases such as:

always being on the go

positive

energetic

frequently entertaining and having people over for dinner with gourmet meals

arranging interesting and fun entertainment such as mystery dinners, ski weekends

spontaneous and impromptu, and

the life of the party.

They even produced a photo from 1986 to document their description (see below):

 
From left to right: Jim, Joyce, Kate, Tom in Calgary, Alberta, Canada in 1986

I couldn’t recognize the person they were describing. Perhaps in the past, I had been transformed into a Personality Plus gal and hadn’t even realized it.

On that particular day in 2010 in Scotland, after an exhausting week at the congress, I felt like I had Personality Minus, not Personality Plus. Being very quiet, reflective, and tearful, although I was at a party, I certainly wasn’t the life of it. I felt as though Parkinson’s had destroyed my personality with my masked facial expression, quiet breathy voice, sometimes stooped posture and shuffling steps.

On the other hand, I was happy to be reminded that once I had Personality Plus. I left Scotland with a lilt in my voice and a spring to my step.

How Prevalent Is Suicide in Parkinson's Disease?

The dramatic headline “Suicide is Five Times More Likely in Parkinson’s Disease” caught my attention. It made it seem as though everyone with Parkinson’s Disease (PD) was either thinking about suicide, attempting suicide or committing suicide.

I was skeptical and asked Benzi Kluger, MD, neurologist and specialist in the non-motor symptoms of PD, at the University of Colorado at Denver.

Dr. Kluger’s comments about the study (at the bottom of this post) are as follows:

1) This is a relatively small study. There were just over 100 patients followed for 8 years and only 2 suicides. With such a small sample the chance of error is high. One more or less suicide would have totally changed their results.

2) Suicidal ideation (thoughts) seem to be higher in PD, which is not surprising because depression is also more frequent.

3) Suicide is a cultural phenomena and higher in Serbia, where this study was done, than in the US.

4) Some studies suggest suicide may be at increased risk after DBS, but again these studies are small.

5) There is probably some increased risk for suicide with PD, but larger studies are needed in this country to reliably estimate this risk. Physicians, patients and care givers should be aware of this risk and take it seriously.

1: J Neurol Sci. 2009 Sep 7. [Epub ahead of print]

Suicide and suicidal ideation in Parkinson's disease

Kostiæ VS, Pekmezoviæ T, Tomiæ A, Jeèmenica-Lukiæ M, Stojkoviæ T, Spica V, Svetel M, Stefanova E, Petroviæ I, Džoljic E.

Institute of Neurology CCS, School of Medicine, Belgrade, Serbia.

Little is known about the prevalence and correlates of suicidal behavior in Parkinson's disease (PD). In the first part of the study, we followed a cohort of 102 consecutive PD patients for 8 years and found that the suicide-specific mortality was 5.3 (95% CI 2.1-12.7) times higher than expected. In the second part, we tested 128 PD patients for death and suicidal ideation and administered an extensive neurological, neuropsychological and psychiatric battery. Current death and/or suicidal ideation was registered in 22.7%. On univariate logistic regression analysis, psychiatric symptoms (depression, but also anxiety and hopelessness), but not the PD-related variables, were associated with such ideation. On multivariate logistic regression analysis this association held for major depression (odds ratio=4.6; 95% CI 2.2-9.4; p<0.001), psychosis (odds ratio=19.2; 95% CI 1.4-27.3; p=0.026), and increasing score of the Beck Hopelessness Scale (odds ratio=1.2; 95% CI 1.0-1.4; p=0.008). In conclusion, the suicide risk in PD may not be as high as it is expected, but it is certainly not trivial. According to our data almost a quarter of PD patients had death and/or suicidal ideation, that may significantly influence their quality of life.

PMID: 19737673 [PubMed - as supplied by publisher]

Parkinson's Disease's Deficits

It's 3:02 in the morning in Colorado. It's NOT a normal waking time for me. However, most of my friends around the world with Parkinson's Disease (PD) have fragmented sleep patterns and wake up in the middle of the night or too early in the morning. But the lack of sleep in PD patients is a story for another time.

There are too many deficits or "lacks of" with PD starting with the "lack of dopamine." In the middle of the night, I am stewing about my "lack of voice and speech." It happened again yesterday: the "lack of communication" when I was talking to a Deep Brain Stimulation (DBS) patient and his family at the hospital. I secretly admired the family member who had the guts to ask me: “How did DBS affect your voice and speech?” I knew he was worried about his father sounding like me after DBS.

My voice and speech have been impacted negatively by PD and worsened by DBS.

The organization DBS-STN conducted an interesting survey, "Speech in individuals with PD with and without DBS" at:  http://www.dbs-stn.org/UserFiles/File/SpeechIn%20Ind_PD_rev_.pdf

The survey indicated the following:

“It is common for individuals with PD to experience monotonous and reduced pitch and loudness, variable rate of speech, short rushes of speech, imprecise consonants, and a breathy and harsh voice.”

and

“Some research has found that speech intelligibility (clarity in expressive speech) worsened following DBS, and speech sounded more slurred. DBS has also been found to have an adverse impact on intonation or rhythm, articulation, and intelligibility; the stimulation itself can cause changes in speech."

My voice and speech sometimes suffer from further “lacks”:

Lack of strength

Lack of volume

Lack of clarity

Lack of warmth

Lack of vitality

Lack of articulation

Lack of variety

Lack of speed

Lack of being heard

Lack of being understood

which result in my:

Lack of self-esteem

Lack of confidence

Lack of contact with people

Lack of feeling normal

I often feel like One Big Lack!

Occasionally my voice and speech seem almost like my pre-PD self. This is the reason that I refuse to delete my 10-year-old voice mail greeting which demonstrates my potential for a warm and clear voice.

At my last DBS programming session, my neutologist/programmer and speech therapist claimed that my voice sounded "perfectly fine," that the goal is understandable speech, and they can understand me (my interpretation was "So what's the problem?").

When 600 people were chatting in the lobby after the Rockyettes dance performance on June 11, my speech therapist commented that she heard every word I said above the roar of the crowd. It is ironic that I am satisfied with my dance performance but dissatisfied with my speech performance in a situation that requires no speaking.

I don’t know if the professionals are accustomed to such poor speech and voice in their PD patients, that my speech and voice sounds “perfectly fine” to them. But the medical folks are not there to witness the frustrated phone calls or the anger in the faces of the audiences when they can’t hear or understand what I’m saying.

It is similar to the experience that most of us have had when taking our car in for repair only to discover that our car works “perfectly fine” when the car mechanic is present.

During the past years, I’ve tried the following measures to improve my speech and voice. You'll notice that I'm no slacker. 

Thyroplasty

• Before I was diagnosed with PD thirteen years ago, I went to an ear-nose-and throat physician because of my “lack of voice volume.” During the evaluation process, he discovered that my vocal cords didn't come together when I spoke. The only population he had seen this was in stroke patients. It was obvious that I did not have a stroke, but he never considered the possibility of PD. He suggested having a surgical procedure called a thyroplasty to correct vocal cord weakness. Patients with vocal cord weakness have a weak, breathy and hoarse quality to their voice and speaking requires considerable effort.

Traditional speech therapy

Lee Silverman Voice Treatment (LSVT) and post LSVT exercises including “Think Loud” at: http://www.lsvtglobal.com/

Voice Aerobics at: http://www.voiceaerobicsdvd.com/

Toastmasters International at: http://www.toastmasters.org/

DBS programming adjustments

The BREATHER­ – this device strengthens and acts like resistance training for respiratory muscles. Information about the BREATHER can be found at the following websites: www.blaismedical.com  www.pnmedical.com  www.beterairways.com

Blowing up balloons – to strengthen lung capacity

Facial steamer

Humid climate or humidifier

Singing in the shower and car

White noise machine – to talk louder than machine to increase my voice volume

Metronome –to pick up the tempo of my voice

I have found that LSVT, Voice Aerobics, the BREATHER, and humid weather sometimes make my voice and speech almost seem normal.

Perhaps this is as good as it gets with PD and DBS. Perhaps I’m greedy and want it all – to talk and dance simultaneously–imagine that! Perhaps I need to lower my expectations and learn to live with it. However, despite my deficits with PD, I’m not ready to give it up and will keep on talking and dancing for as long as possible.

Parkinson's Disease Is No Picnic

I’ll never see Parkinson’s Disease as a gift, blessing, or journey.

Parkinson’s is NO PICNIC.     

Parkinson’s is not a friend of mine. Although I’ve met many wonderful people through having Parkinson’s, I would have preferred meeting these folks under different circumstances such as a cocktail party, not a support group.

I’ll never write a book called The Joy of Parkinson’s. I don’t believe that there will be a cure for Parkinson’s in my life time. I’m doomed to be a pessimist.

I think optimism is highly overrated. I’ve tried to convert myself into an optimist, but deep down, I’m really a glass-half-empty kind of gal. According to social psychologist, Roy Baumeister, optimists are more divorced from reality than pessimists. They have high opinions of themselves and show exaggerated beliefs in their ability to control what happens around them. They think their future will be far better than the average person's. On the other hand, pessimists display fewer self-enhancing illusions and are more realistic.

Being a pessimist, I worry about peculiar things such as when the time comes, will I be able to afford living in an assisted living facility or nursing home in the style that I’ve grown accustomed. I fret about when and how I’ll die from Parkinson’s. Will I fall, choke, or develop aspiration pneumonia? Will someone try to prolong my life when its quality is no longer there?

Someone recently accused me of being a DBS (Deep Brain Stimulation) Cheerleader, although I’ve never seen myself as a rah-rah kind of girl. I invariably expect things to turn out worse than they do. After having Parkinson’s for 13 years, I was sure that I’d be dead by now. At any moment, I expect that God will drop by, tap me on the shoulder and say, “Sorry, little missy, but your time is up.” It’s that Irish Catholic anxiety syndrome that makes me expect the worst and go through life being fretful.

However, there is an upside to not having a naturally sunny disposition. Being the kind of person who fears the worst, I have often been pleasantly surprised.

You optimists out there, please surprise me. Find the cure for Parkinson’s in my life time and turn Parkinson's into a picnic.

.

Apathy as a Virtue

Jean from Columbia, Missouri responded to What Difference Does It Make: Apathy and Parkinson’s with the following:

“Darn!!!  I thought that I was becoming a better person, mellower and less confrontational.  I thought that I had finally developed the good sense to know which battles to fight and which to just let slide.  But now I learn from your website that what I thought was a VIRTUE is really just a SYMPTOM--apathy.

Drat, phooey, and rats!  I think that I'll just ignore the diagnosis and keep believing that Parkinson’s has given me a new perspective and greater tolerance.  I think that I'll keep apathy in the VIRTUE column.  I kind of like the new, more tolerant, me.”

***

I can be just as virtuous as the next gal. But I am less tolerant than Jean and still struggle with picking and choosing my battles. Perhaps a little dose of apathy might be the antidote for my Parkinson’s woes.

What Difference Does It Make: Apathy and Parkinson's

I am happy to report that apathy is NOT one of the Parkinson’s Disease (PD) symptoms that has hit me, at least for now (but one never knows if apathy might be lurking around the corner). In fact, I may have the opposite problem of caring too much, but that’s another story.

Features of Apathy

Hubert H. Fernandez, MD from the National Parkinson Foundation’s Center of Excellence at the University of Florida in Gainesville, discussed apathy at the Colorado Neurological Institute’s program on January 24, 2009.

Apathy is defined as a dulled emotional tone associated with detachment or indifference. The apathetic patient’s typical response when asked a question such as what he wants to do or eat is “I don’t care.”

It is normal to have specific disinterests in life, such as not caring about sports, money, or politics. However, with apathy, the patient loses interest in all aspects of life, including areas of former interest. An apathetic patient is typically a couch potato.

Joseph H. Friedman, MD (a former mentor to Dr. Fernandez) in his book, Making the Connection between Brain and Behavior, states that apathy encompasses a behavioral pattern of:

• Loss of interest in events
• Reduced spontaneous interaction with people and pets
• Decreased concern or seeming indifference to friends and family
• Muted emotional tone
• Loss of interest in hobbies
• Loss of enjoyment
• Loss of distress at hearing bad news
• Loss of motivation

Apathy is Different from Depression

Dr. Friedman described some of the similarities and differences between depression and apathy.

Depressed and apathetic patients frequently share these similarities:

• Anhedonia (absence of enjoyment)
• Loss of motivation
• Lack of interest

Depressed patients often have the following symptoms while apathetic patients rarely experience these symptoms:

• Sadness
• Irritability
• Reduced effort
• Sleep disturbances
• Anxiety

It is also possible to have the dual diagnosis of depression and apathy.

How Apathy Affects Caregivers and Family

Dr. Fernandez indicated that depression tends to drive the patient crazy, whereas apathy can drive the patient’s family crazy. Apathy becomes more of a problem for the caregivers, family and friends than for the PD patient.

Apathetic patients participate less in activities that help them function. This results in a greater burden on the caregiver which requires more understanding, patience and effort. A less responsive patient provides little satisfaction for the caregiver.

How Apathy Affects the PD Patient

Both physicians agreed that the apathetic patient doesn’t care that he doesn’t care. The “I don’t care” attitude provides a protection from the grief and loss suffered by the PD patient. It might be preferable for the apathetic patient to not care versus feeling frustrated and disgusted with one’s loss of functioning. Not caring conserves energy that the apathetic patient might not have to expend.

Treatment of Apathy

Although there is treatment for depression, there is currently no treatment for apathy. Dr. Fernandez stated that research is being conducted using pet therapy to help PD patients with apathy take some interest in life. Wouldn’t it be great if dogs could break the behavioral resistance and emotional barriers of apathy and allow PD patients to express some zest for life?

Resources:

Making the Connection between Brain and Behavior by Joseph H. Friedman, MD at: http://www.joseph-friedman.com/

Hubert H. Fernandez, MD at Ask the Doctor, National Parkinson Foundation at: http://www.parkinson.org/NETCOMMUNITY/Page.aspx?pid=255&srcid=216

Sunshine after the Rain

 

“Laughter through tears is my favorite emotion.” ~Steel Magnolias

 

When I read Terri Reinhart’s story, For Crying Out Loud, I cried until I laughed.

 

I never used to be one who cried. During my pre-Parkinson’s days when I was a Certified Public Accountant, I never cried for 15 years. Of course as an accountant, I seldom laughed or expressed much of any emotion.

 

The “gift” of Parkinson’s opened up my tear ducts. Now…

 

I cry at weddings.

 

I cry at funerals.

 

I cry when I talk about having Parkinson’s Disease, and I cry when “I don’t want to talk about it.”

 

I cry when waiting for approval of my disability benefits, and I cry when the benefits are approved.

 

I cry when I do amazing things such as dance with the Rockyettes and climb the vertical ladders at Mesa Verde National Park, and I cry when I think of the future without these activities.

I cry when people are kind and cry when people are cruel.

 

Perhaps I have turned into a Cry Baby, but that’s okay because I am emotionally healthy now. Opening up the flood gates has allowed the full expression of ALL my emotions. Laugher through tears is my favorite, like sunshine after a hard rain.

 

 

Ask the Psychologist

From time to time, my blog readers ask questions beyond my area of expertise. This was the case when I recently received a question from a support group leader. I asked Carolyn Zeiger, a clinical psychologist and PWP spouse, for her response. Thank you, Carolyn, for generously sharing your expertise.

Question: In our support group, I think what we have is a PWP married to a Type-A personality male who seems (to the PWP) to be using her diagnosis to exert more control. Refusal to cooperate causes such stress it becomes counter-productive to her. She goes nowhere without him except to support group meetings. He tells her doctor, family and friends that her depression and growing lack of sense of herself is due to the PD. I think this is a long standing difficulty that the PD is exacerbating - and may be yond the support of our group. Any thoughts??

My thoughts: I have definitely seen this in other couples (PD and Alzheimer's) usually with a pre-illness domineering husband. The men I've seen are scared: PD can't be controlled! "But I have to control it! That's what I know how to do." In a new situation, when we don't know what to do, we do what we already do know how to do. Further, not being able to even acknowledge being scared (not manly), some men handle their fear by becoming ever more controlling of the PWP.

Not only does illness shape us, who we are shapes our illness--not just the person with the diagnosis. Those closely connected also are shaped by, and shape, the way the illness manifests and progresses. Just ask the renowned neurologist Oliver Sacks (Awakenings).

Sometimes there's a self-esteem issue involved, so if something is wrong with his wife, it must be due to the illness--nothing that reflects badly on him. Also, most men believe they should fix their wives problems (poor guys!) and I have seen some men make the most desperate attempts to personally fix, care for, etc. their wives, beyond what works for either one of them. Their efforts ultimately become counter-productive.

And a third motivating factor can be a fear of being emotionally abandoned, due to either disability or death. I remember a man who collapsed in sobs telling me that he couldn't imagine living without his wife--who was in her late 80's and had advanced PD. His love is very real, but this is something we all need to imagine, to prepare ourselves for, even when our spouses have no medical problems. He spent a fortune trying to cure or ameliorate the PD, and devoted his life to caring for her--to the extent that it made her feel suffocated and restricted.

Of course, these particular tendencies show up in women also, but are more common in men. We women have our signature ways of coping also. For better or worse.

In all cases, when you look closely, it is a matter of attempting to meet the needs of the caregiver, not the PWP (I need to be in control, I need to be the fixer/provider, I need this person emotionally). We all try to meet our own needs, and should, but the needs of both spouses need to be understood, considered, and the ways of meeting them negotiated. PARTNERS! Many couples do not have a history of being able to do this. They can still learn, however. PD may give them the opportunity to enrich their marriage out of necessity.

I got really carried away here...anyway...I would recommend referring the PWP to a licensed mental health professional who is experienced in working with people who have a chronic, progressive illness, better yet, experience with PD itself. The background of the therapist matters because he or she needs to be able to differentiate, for example, PD-based anxiety or depression from that which is psychological in origin. Problems that appear to be psychological can be neurological and vice versa. The therapist needs to consult with the PWP’s neurologist on occasion. The PWP needs to have what it takes to go for counseling with or without her husband's consent. If he won't drive her, find a friend who will. Perhaps, in time, husband will come too if that's what's needed.

Almost nobody with PD that I have met, or their caregiver, is in therapy. (I do know a couple that has been in therapy for years to deal with each thing as the PD progresses.) At some point, every one of us could use a little help, both PWPs and their caregiver-spouses. I found it enormously beneficial to see a grief counselor to get beyond my overwhelming sense of loss when my husband was diagnosed with PD. Therapy doesn't need to be long term. Just one session did me a world of good.

It would be good for the support group to create a list of qualified professionals, both neuropsych and grief counselors, (as I did for ours), and give it to everyone in the group to have in their "PD Survival Kit," so to speak. The list is right there if they need it, and they don't have to ask anyone, to publicly reveal their distress, to be able to get help.

Your friendly neighborhood shrink and PWP spouse,
Carolyn

Carolyn Allen Zeiger, Ph.D.
Clinical and Health Psychologist

Shining Light on the Parkinson’s Personality and DBS

Many of you have heard of the so-called Parkinson’s personality, described as a person having traits and behavior such as:

Serious and humorless

Unwilling to take risks

Rigid and inflexible

Hard working

Obsessive

Introspective

Yep, that pretty much describes me as a “normal” person living with Parkinson’s Disease. I might throw in a several more characteristics:

Type A personality

Perfectionistic

Controlling

High-driving

Intelligent and highly educated

So what happens when “normal” people with Parkinson’s personality traits (perfectionist, high-driving and risk-adverse) take the risk of having Deep Brain Stimulation (DBS) Surgery?

We want perfection.

We want immediate results.

We want to be like the persons we were before we had Parkinson’s. We’d prefer to be a little better.

We want control of the neurostimulator.

And we want it now.

Despite the propaganda seen in videos promoting DBS, most of us won’t immediately jump out of our wheelchairs and run a marathon after DBS. DBS is not like a tonsillectomy or appendectomy where you take out the tonsils or appendix and you immediately feel better. It’s a process that requires patients with patience. Only after reprogramming of my DBS system, am I willing to say that I would do it over again (thank you, Dr. Olga).

The light bulb moment came for me when I figured out and accepted that with DBS, I am exactly the same person that I was at an earlier stage of Parkinson’s. And that’s good enough for me.

Stopping the Negative Self-Chatter

I need to stop nagging myself. With Parkinson’s (PD), I have become both the nagger and naggee. It is demoralizing.

When my neurologist scrutinizes my gait, I force myself to swing my arms, unclench my hands and stand up straight.

When walking, I order myself to flex the front of my foot and let my heel strike first to avoid shuffling.

When I’m at my yoga class, I remind myself to push my shoulders blades together, straighten my back and “don’t forget to breathe”.

When I’m performing with my dance group, I tell myself to get rid of that PD frozen facial mask by smiling to the audience and pretend that I’m having the most fun of my life.

When I am driving, I reprimand myself to focus entirely on driving. I turn off the music in the car to avoid distractions.

When I speak to others, my internal chatter warns me to speak loudly and enunciate my words.

When I concentrate on making my handwriting bigger and more legible, I suddenly have nothing to say.

Why is multi-tasking so difficult?

According to Joseph H. Friedman, MD, author of Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease, people living with PD have trouble doing two things at the same time because of the loss of the “automatic pilot” mechanism due to PD. It's as if the program to the brain that previously allowed us to do many complex tasks without thinking about them, has gone on strike.

Dr. Friedman elaborated further about the PD brain which “says to blink less, swallow less, write small, talk softly, stoop the shoulders, shuffle, and while all of these problems can be overridden, they can only be overridden consciously, that is, while people are thinking about one particular problem. Unfortunately there are lots of other things to think about.”

This self-flagellation has become just too much. I need to cut myself some slack and keep on walking, talking, dancing and exercising as best as I can, for as long as I can.

The Brain-Behavior Connection in Parkinson's

Finally, someone gets it! At long last, someone is talking about the behavioral issues related to Parkinson’s Disease.

And that someone is Joseph H. Friedman, MD* in his new book Making the Connection Between Brain and Behavior: Coping with Parkinson’s Disease, released on November 28, 2007. It is refreshing that Dr. Friedman not only understands the connection between the PD brain and PD behavior but also has the ability to clearly explain this relationship.

This book, written in laymen’s language, is the only one of its kind. It focuses entirely on an area that most doctors overlook, an area that often causes the most problems and can be the most treatable.

While patients and families are usually aware of the physical challenges that accompany Parkinson’s Disease, few are prepared for the common behavioral aspects that impact their quality of life, including depression, anxiety, fatigue, apathy, dementia, paranoid delusions, compulsive behaviors, and sleep disorders. There is also a chapter on the impact of Parkinson's on patients’ driving abilities.

This book is a wonderful resource for patients, care partners and family members. It is also invaluable for healthcare professionals looking for a tool to help their patients open up about the challenges they are facing.

And who wouldn’t be touched by a doctor who dedicated his book to: “My patients, whose courage, resilience and fortitude are a never-ending source of inspiration.”

Learn more about Dr. Friedman and his valuable book on his website at: http://www.joseph-friedman.com/

* Joseph H. Friedman, MD, is the director of the Parkinson’s Disease and Movement Disorders Center of NeuroHealth; Clinical Professor of Clinical Neurosciences at the Warren Alpert School of Medicine of Brown University; and Adjunct Professor in the School of Pharmacy of the University of Rhode Island.

It's Time for Depression to Come Out of the Closet

Check out May You Never Understand, Joe's post in his blog, Day by Day Adventures of the PD Warror.

Joe took a risk and shared his personal experiences with clinnical depression. His message will break the stigma attached to depression and the stereotypes attached to depressed people.

According to statistics, 40-50% of people with Parkinson's suffer from depression. I’ve been fortunate that I don’t suffer from depression, although in the past I’ve had periods of low level depression, sadness and anxiety. However, many of my friends with Parkinson’s Disease have suffered a great deal due to clinical depression.

Thank you, Joe for bringing this important topic out of the closet. It took a lot of courage to do so. By taking the risk, you have educated and inspired all of us.

Unpredictable

Unpredictable arrives with no reservations reminding me that life, like food, is not always made to order.

I brag to my friends that I’ve gotten rid of Unpredictable as though she is a pesky mosquito and if I spray enough insect repellent, she will banish. The next day I wake up with an itchy red mosquito bite.

A neighbor with MS limps up the steps to our front door with her cane. She asks if my PD is in remission because I look so well. I tell her that there is no remission with PD. It is chronic and progressive. There is no cure.

I ponder the concept of remission. Wouldn’t it be great if PD would remit?

The boy down the street wonders if my PD is contagious.

A friend with PD phones, recently having the same surgery as me, attempting to get rid of his PD. I don’t know what to say, feel as though I’ve been a fraud by giving him false hope.

The only thing predictable about PD is her unpredictability.

Converting Anger into Action

Those of us with Parkinson’s, particularly with young onset PD, have plenty of reasons to be angry. Going from being strong, healthy and independent to having a chronic, progressive, debilitating disease such as PD, can be devastating.

I’ve been off and on with my anger about having PD for the past eleven years. Growing up with 16 years of Catholic education, I learned early on that angry words, behavior and even angry thoughts were sins. Being angry was lumped together with the commandment “Thou shall not kill.” The theory was if you get too angry, you might end up killing someone. Anger was one of the Seven Deadly Sins.

Anger as a normal emotion and a fundamental part of the human condition is a relatively new concept for me. Most of us have been pissed off, upset, enraged, mad about something or someone, including ourselves. The comedian, Gilder Radner described her battle with ovarian cancer as being “in a room of anger” in her book, It’s Always Something.

I began making some headway along my PD path when I first acknowledged my anger. Once I owned up to it, it was time to take care of it. I didn’t want to live in a room of anger but wanted to find some ways to manage it. I realized that the stress of not managing my anger would only result in the exacerbation of my PD symptoms.

For the most part, I’ve been able to avoid the depression (anger turned inward) that often accompanies PD by attempting to convert my anger into action. For me, the following action steps have helped:

· Writing letters when I perceive an injustice in the PD community

· Volunteering to promote awareness and understanding of PD

· Co-founding a PD support group

· Writing a blog about living with PD

What steps might you take to help convert anger into constructive action?

Facing Our PD Fears

I was obsessing about my fears and worries about having Parkinson’s Disease (PD) yesterday, when I received a phone call from a woman who was considering joining a PD support group. She was trying to determine the level of functioning of the group members. She attended another PD support group many years ago, everyone was so much worse than her, and it was depressing. I tried to reassure her that there were a number of high functioning members in this group, that everyone with PD exhibits different symptoms, and each person’s PD progresses at different rates.

But I missed the fear in her voice about what’s ahead for her with PD—how will her PD manifest itself, how quickly will her PD progress and ultimately when will she die from/with it.

I had a similar experience 11 years ago. Two days after I was newly diagnosed with PD, my husband Tom and I attended a PD support group geared for young-onset patients. We couldn’t remember much about the content of the meeting, but what we observed will stay with us forever. Some people’s arms and legs were writhing and flailing, others were squirming, and one patient was in a wheelchair. We freaked out, left early during a break and had nightmares for three nights.

If this was going to be my future with PD, I didn’t want any part of it. I avoided all PD support groups and scheduled my neurology appointments early in the morning to avoid the shaky folks living with PD. I led my life based on Sir Winston Churchill’s quote: “Men stumble over the truth from time to time, but most pick themselves up and hurry off as if nothing happened.” My magical thinking sometimes went like this: “If I didn’t talk about PD or see people with PD, then I didn’t really have it.”

My biggest regret was not being open about having PD sooner. I missed opportunities to help myself and provide support to others.

I hope the woman who called yesterday decides to attend the support group. I trust that she will realize, as I recently have, that there is support for her in good times and in bad times and that we are all on both sides of the fence at some time in our lives.