Shake, Rattle and Roll

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

 

 

 

 

 

 

Going Through a Bit of a Rough Patch

I’m hungry for a vegetarian pizza for dinner. I order online. I am grateful that I don’t have to talk to a person to order my pizza. The printer spits out my order confirmation indicating that my pizza will be ready in 18 minutes.

In the past when I’ve tried to order pizza by phone, the pizza clerk didn't hear or understand me. She repeatedly shouted, “Ma’am, you’ll have to speak up” in a voice that is filled with frustration and annoyance. The pizza clerk hangs up the phone on me. I feel defeated and hungry, and with all that effort. there is still no pizza.

But several months later, when I ordered a pizza by phone, I had a very different experience. I was now able to speak, and my voice was frequently strong enough to be heard. I decide to drive over and pick up the pizza in person. I use my driving time to and from the pizza place to practice the voice and speech exercises from Mary Spremulli’s Voice Aerobics CD. It's a fun way to strengthen my voice and improve my speech skills, and it feels like I’m getting my own individual voice session with Mary. Also, it takes only 22 minutes to complete, and most of the places that I drive to take less than 22 minutes of driving.

I arrive at the pizza place and am greeted by a red-haired, twinkly-eyed man who looks vaguely familiar. He had a name badge that says “Hi, My name is Gary.” He’s the kind of guy who has 1000 friends on Facebook but has met only a few of them in person.

The mostly one-sided exchange went like this:

Pizza Guy: (looking surprised) “I haven’t seen you for a long time.”

Me  I wanted to say but didn’t “I am confused that you are keeping track of me when I don’t even know you.”)

Pizza Guy: “Your husband said that you are going through a bit of a rough patch.” and that you have problems with your voice due to Parkinson’s and the surgeries.

Me: I considered saying, but didn’t “How do you know my husband?” but then I remembered that my husband picked up a pizza for our evening meal a couple of weeks ago, and Gary must have introduced himself.

If Gary was a true fiend and if the long line in the pizza place wasn’t filled with hungry customers waiting to be served, I might have expressed myself as follows:

“Rough patch.” That’s an understatement. I’ve had too many rough patches along my Parkinson’s path for the last 18 years and Deep Brain Stimulation for the past 9 years. The major rough patch was the loss of my voice and I am delighted to say, the recent recovery of a new and different voice (which I will write about in more detail in another article).

In the last couple of years, I’ve been bombarded by the illnesses and deaths of many family members and loved ones. I’ve been consumed by the sorrow of losing too many people, too soon and before their time. Too much tragedy for one family to endure.

Yes, I’ve lived through the previous rough patches. I’ve sanded some of the rough patches into smooth patches, and I’m beginning to heal and recover. Life is full of rough patches to conquer.

Despite Parkinson’s, Making It a Great Day

Yesterday was a great day. I've had so few great days lately with Parkinson’s that I’m excited to share my positive experience.

I take Broadway dance classes and perform with a group called the Rockyettes. One of the dances that we are learning to perform is our version of John Travolta’s dance to Stayin’ Alive. While I know many of the dance steps, I am struggling to learn the sequence of these steps. So instead of dancing from the beginning to the end, I broke up the dance into five segments and tried to learn the dance in a different manner, e.g., in a. different order (e.g., segment 3, 5, 1, 4, 2) and with different cues for transitions and dance sequences.

Observing our group having trouble learning this dance and considering that we were performing it the next day, Ann, the dance instructor, offered to dance with our group to Stayin' Alive. We happily agreed to take her up on her offer. It gave us the confidence that we needed to learn the dance well before performing it on our own.

Ann had encouraged the dancers to smile while performing. The dancers provided all kinds of excuses on why it was impossible—“I can't multi-task” or “I can't think about my current dance step, my next dance step and smile all at the same time” or "I'm not a smiley kind of gal.” But during this performance, we miraculously cued ourselves by smiling to each other and the audience. Smiling became contagious.

And the best part of the day was that my voice worked almost all day. I was able to communicate with the dancers and talk to members of the audience after our performance. I had glimpses of my former self before Parkinson’s when I enjoyed talking and didn’t have to struggle to be heard or understood.

One of the dancers is a newbie to our group and found it challenging to learn the new dances. When I had observed tremendous improvement in her learning of the new dances, I told her that it was obvious she was working hard at it. She thanked me and hugged me, likely because I had noticed.

Lessons I Learned:

A great day doesn’t have to be a perfect day. In the past, if I had a great day for most of the day, but I had one setback, I would discount all the good aspects and call it a bad day, For example, during my last dance at the performance, my right hand started tremoring. In the past I would have been mortified, tried to cover it up, and said it was a terrible day. However, when my right hand shook at a recent performance, I tried to accept it and refocused on my dancing.

It is important that I verbalize supportive thoughts and observations instead of keeping them to myself. A few honest words of encouragement can brighten someone’s day.

It is necessary for me to analyze the components of a great day so that I can continue to create more of them. Despite having Parkinson’s Disease for 18 years, I can have a great day if it includes dancing, communicating and interacting with others and being creative. I’m looking forward to making many more great days, weeks, months and years.

Make it a great day.

 

Rockyettes Group Photo--2014

(I'm in the 2nd row at the 1st position on the far left).

 

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

Weathering Life’s Storms

It has been a difficult summer for the people of Colorado—coping with the devastation caused by the extensive wild fires and now dealing with the tragedy of the movie theater massacre.

My husband, Tom Kelsall, has spent his entire career as a licensed clinical social worker, working with families in crisis and helping them cope with tragedy.

Tom compiled a list of some helpful and practical hints for dealing with traumatic events:

• Express yourself and use your support network by talking to a trusted spouse, friend, family member or colleague at work about the trauma and your feelings about it.

• In addition to or instead of talking, write about the trauma and your feelings in a journal or draw pictures about the trauma and your feelings.

• Take care of yourself by attending to your spiritual needs.

• Nurture yourself by enjoying some fun activities with your family and friends.

• Continue normal routines and activities of interest, i.e. sleeping, eating, exercise, work, social/recreational activities, contact with family and friends.

• Protect yourself by avoiding over-exposure to trauma through electronic, social media and your own social network. Turn the television off when overloaded.

• Try to make a difference and build a better world. If interest, time and resources are available, do something that is positive and supportive in the community, i.e. volunteer, give money, donate blood, visit a memorial, attend  a religious service, visit victims and families, make and deliver meals, etc.

• For helpful tips in dealing with children, read How to Help Children Frightened by News Events at  http://www1.cyfernet.org/hotnew/07-12-news.html