Shake, Rattle and Roll

In Search of Meaning

In Search of Meaning
By Tom Kelsall
Copyright © 2008

What do a 45-year-old former journalist, a 50-year-old former urban planner, a 53-year old former lawyer, a 47-year-old former technician and a 58-year-old former volunteer coordinator have in common? After 10-15 years of enduring young onset Parkinson’s Disease (PD), these individuals were forced to give up their hard-earned careers, and their dreams of the good life were shot down early.

I am currently eligible for retirement. I can choose to retire when the time is right. PD gives a person no choice. The disease is always in control. There is no right time. I could go on to other jobs in my profession, do different work altogether, do volunteer work or just relax and have fun. PD puts people on disability and shuts down the work world for them forever. Surviving becomes a priority for most PD patients, not working, volunteering or having fun.

My own career has spanned 34 years and continues to energize me. My work has given me a sense of deep satisfaction, enjoyment and a sense of accomplishment in giving back to the community. An employee is rewarded for many years of work and commitment, while disability pays those living with PD not to work. If I had given up my career 15-20 years ago, I would not have felt the same – perhaps less complete and less satisfied in retrospect. A fulfilling career can leave a person feeling very satisfied and victorious. I am blessed that I can still choose my own course in life and not have PD dictate it for me.

Succumbing to PD is equivalent to ending a dream early, leaving a person feeling unfulfilled and defeated. I often wonder about how people living with PD maintain their dignity and self-respect without meaningful employment. I admire their struggle to find meaning and their refusal to accept defeat.

The Road Less Traveled

The Road Less Traveled
By Tom Kelsall

Yes, it has happened again. The resilience and resourcefulness of families never ceases to amaze me, even after 34 years of being a therapist!

I have met two couples over the past few months who have been coping with Parkinson’s Disease (PD) for 33 years. Holy cow! That is as long as I have been married. I wonder if I could have survived 33 years married to a PD spouse. Kate, my wife, has only had PD for 12 years. Welcome to boomer longevity, PD not withstanding. I guess we are just getting started.

How can these unique people be so loyal and enduring for 33 years? It must take one very special partner with patience, strength and commitment that is off the chart. I applaud these individuals who have set the bar quite high for the rest of us mere mortals. I am not sure if I can match their feat or if I really want to. Their solution might not fit the challenge PD is giving me. Perhaps an assisted living facility at some point in the future for Kate will be necessary to keep my sanity intact.

Although the PD road is steep and treacherous, I am coping with our PD journey just one day at a time.

Another Article by Tom Kelsall:

Insight from a Parkinson's Spouse and Social Worker

When A Daughter Becomes Her Mother’s Caregiver

I struggled between going to sleep at a decent hour last night and reading the book that I started the same afternoon. Carol D. O’Dell’s compelling book, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, easily won my familiar battle between sleeping and reading.

Carol and I just had too many similarities (and a couple of major differences) not to continue reading this page-turner until the bittersweet end.

Carol, a mother of three, with her husband, invited Carol’s mother with Parkinson’s and Alzheimer’s to move in with their family. Carol, an adopted child with no siblings, attempts to fulfill the childhood promise of never putting her mother in a nursing home. Carol struggles to maintain her roles as wife and mother in her own family and roles of daughter, caregiver and mother to her own mother.

I admire Carol for taking on this challenge. I was curious how she managed to accomplish this without losing herself (she almost lost herself a couple of times, and you’ll have to read the book yourself to learn the details).

On the other hand, I am married, have been diagnosed with Parkinson’s for eleven years, and my mother, 600+ miles away, is slowly dying of Lewy Body Dementia (LBD). LBD is a horrible combination of Alzheimer’s, Parkinson’s Disease with some of the features of Schizophrenia (see Lewy’Has a Grip on Mom). Like Carol’s mother, my mother is adamant about not wanting to be in a nursing home, and until her money runs out or the caregivers wear out, is living in her own home with 24/7 paid caregivers with my sisters and brother nearby actively participating in her care and visiting on a daily basis.

Also, my mother-in-law died with/from Parkinson’s three years ago. So I’m quite familiar with the emotional roller coaster that Carol is talking about, and you too will resonate with this topic in the future, if you haven’t already had a similar experience.

I enjoy Carol’s style of writing with her honesty, sensitivity and humor. Her book is a compilation of her journals as short vignettes, that she wrote to help her maintain her own sanity, while caring for her aging mother.

I laughed and cried as I identified with almost every funny and painful incident and felt like I was in the room with Carol and her mother throughout the entire book.

In fact, after staying up late to finish this book, I woke up early to purchase copies of the book for my brother and sisters, convinced that they too will identify with Carol’s challenges in her role as caregiver.

For more information about Carol D. O’Dell and her book, check out her website at:
www.mothering-mother.com

Those Nine Letter C Words

Perhaps I’m too thin-skinned, but I bristle when I hear those nine letter C words - caregiver or caretaker. I picture a bedridden patient, unable to do any of what the neurologists call “activities of daily living” without assistance. I visualize a helpless victim, unable to contribute to family or society, while the saintly spouse caregives and the patient takes.

It makes me feel like shouting “we’re still here” as many of the six million people worldwide living with Parkinson’s Disease (PD), who are doing our bests to seek meaningful activities to fill our days and contribute to society.

Those of us living with PD are unaccustomed to being idle, as we go about our business, struggling to pass for normal. While we may be impaired, we are not helpless or demented. We are single, married, have multiple roles as husbands and wives, parents, brothers and sisters, sons and daughters, friends and neighbors.

We are the movers and shakers of the past who because of PD, have physically become the movers and shakers of the present. Most of us are well educated. We are volunteers, writers and political activists. You may find us in your yoga class or walking our dogs in your neighborhoods.

When describing these relationships, I prefer the term “support of spouses," “family care” or “kindness of outsiders” than the words “caregivers” or “caretakers.” Perhaps it’s an illusion, but I believe that in our relationships with others, we both give and take – that it’s reciprocal.

So until I’m on death’s doorstep and require full-time paid care, I will ban those two C words from my vocabulary.

The Courage to Ask

It was about time that someone asked.

Everyone always asked my husband, Tom how I was doing, but seldom asked how he was managing. Finally, someone asked him that inevitable question, “What is it like for you to live with Kate and Parkinson’s Disease (PD) for the past eleven past years?”

We attended the screening of “Shaken,” a documentary about PD on Tuesday in Boulder. For the first time ever, Tom and I were on a panel with people living with PD and their spouses, children, and parents.

I was a little nervous about what Tom might say about living with me and PD. I was worried that he might have years of resentment built up that might come spewing out in front of these Boulder strangers.

No need to worry. Tom learned about compassion early in life when sharing a bedroom with a developmentally disabled brother while growing up. He always has been a caregiver.

Tom’s frustrations were similar to mine. He hated the unpredictability of this awful disease, as one minute I seemed to be functioning well and we were going to karaoke, while the next, I moved slowly, slurred my words and could hardly talk much less sing.

Tom mourned the loss of our pre-PD levels of activity with week long bicycle trips in California, Vermont and Wisconsin and running ten-milers in the Canadian Rockies and along the California coast.

Tom expressed his pride that I continued working as coordinator of hospital volunteers until the bittersweet end, and that I was carving out a new life for myself being on permanent medical disability.

I am not the same person that Tom married 32 years ago. PD has impacted me, Tom and our relationship.

We were touched that someone had the courage to ask.