Shake, Rattle and Roll

Whatever Happened to "You're Welcome"

Whatever happened to “you're welcome” as a polite response to “thank you”?

I cringe when I hear “no problem” or “no worries” in response to my thanks. It’s one of my pet peeves.

Other responses that are more palatable to me and that I can live with include:

“Not at all” is used in some cases in response to thank you to indicate that the offer to do something or an action that was done did not require thanks or was of so little trouble that thanks are unnecessary.

“Don't mention it.”

“No thanks are needed.”

“I was glad to do it.”

“Forget it” means to overlook it, it's not important; you're quite mistaken. For example, if I said “Thanks so much for helping,” I might get a response such as “Forget it, it was nothing.” This is a substitute for "Don't mention it" or “You're welcome.”

“My pleasure” implies not just that the speaker was not inconvenienced, but also that the speaker was pleased to provide the help. “Glad to do it” is a less formal version of "my pleasure."

However, when I hear the response of “no problem” or “no worries,” my blood pressure rises, and I get angry, feeling as though my thank you is discounted.

I did a little research on Answers.com to find out more about the origin of “no problem” and similar expressions. The phrase "no problem" is a stock phrase that carries a variety of meanings. Some people associate it with the British Empire and certain former colonies, e.g. Jamaica, Nigeria.

It is typically used to mean "I've taken care of it" or in place of "You're welcome," in response to "Thank you". (i.e. "No thanks are necessary; my effort was no problem for me.") It has no real meaning outside of the context in which it is used.

A phrase or idiom dictionary translation of "no problem" might read "I'll take care of it" or "there's nothing to worry about". However, it effectively means "I'm not going to give you any other assurances," and thus ends a conversation about whatever risk is about to be incurred.

“No problem” implies that the person was not inconvenienced.

In Internet slang, "no problem" is often abbreviated "np" or "NP".

It has also been used in a fake Spanish format as "no problemo."

A British and Australian variation of the phrase is "no worries". I understand that the phrase “no worries” actually doesn’t mean that the person saying it has no worries or that that person is wishing the other person no worries. It is just an empty phrase that has become popular like “Have a nice day” or “How are you?”

It looks like “you’re welcome” has morphed into “no problem.”

“Thanks for listening.”

“No problem.”

Source: Answers.com

Researchers Find Parkinson's Trigger

St. Louis University and Washington University researchers believe they have found the chemical responsible for triggering Parkinson's Disease.

To learn more about this promising study, check out:

http://www.stltoday.com/stltoday/news/stories.nsf/sciencemedicine/story/3140885FFC6D89E286257385001401EA?OpenDocument

End Stage Parkinson's Disease

I can't write about end stage Parkinson's Disease. With a mother-in-law who died from/with Parkinson's, a mother dying from Lewy Body Dementia, and me with Parkinson's who will eventually die from/with it, it is a topic too close to home (see Stages and Progression of Parkinson's Disease).

But Margot, a nurse specializing in gerontology, has clearly and objectively wrote about end stage Parkinson's on this site:

http://en.allexperts.com/q/Parkinson-s-Disease-2096/end-stage-parkinsins.htm

Death from/with Parkinson's is not pretty. It's a dirty job to write about end stage Parkinson's, but someone had to do it. Thank you, Margot.

Interference Problems: An Ingenious Solution

Six months ago, Ramona had Deep Brain Stimulation (DBS) for generalized dystonia. However, she experienced “interference problems” with her DBS system. For example, while entering Walmart through their theft detector devices, her body would develop intense spasms.

For an ingenious solution, check out Ramona’s posting, My Brother, the Genius, in her blog at:
http://lightinearthenvessels.blogspot.com/2007/10/my-brother-genius.html

Hoganites Reunite

I was both nervous and excited before attending my 40th year high school reunion in Kansas City, Missouri the past weekend.

Some of my reunion reflections include:

The Bishop Hogan High School of 1967 morphed into the Hogan Preparatory Academy. Only memories of nuns as teachers exist, now that it is a public charter school. The new Hogan is composed of 99% African American students, all who will attend college and earn an average $20,000/year in college scholarships.

The fellow classmates, the Hoganites who graduated in 1967, are all the same, except in different packages – same needs, feelings, desires, fears, hopes and dreams.

I couldn’t recognize most classmates, unless I stared at their faces for awhile (not recommended). With the women’s dyed and graying hair and the balding men, I wondered “who are these old people?” (me included).

Other classmates and I feared attending the reunion, being uncomfortable with small talk, having to account for the last 40 years. Recalling teenage angst and feeling as though we didn’t belong in 1967, it didn’t seem to matter in 2007.

In 1967, there were numerous cliques in our class: the jocks, the nerds, the smart ones, the dumb ones, the popular ones, the unpopular ones, etc. In 2007, there were no noticeable cliques.

I was viewed as one of the “smart ones” but I frowned on those who weren’t members of the “smart” group.

There were at least three fellow classmates who were forbidden to sing out loud in our high school choir and forced to mouth the words to the songs. I thought it was just me that had a “flat voice.”

A classmate who I never would have pegged as adventurous spent a nine years sailing around the world with her husband.

Even a classmate who is a judge has a compassionate heart.

Classmates that seemed the happiest enjoyed their roles of grandparents. If we could only skip parenthood and move on to grandparenthood, that would be perfect.

With the deaths of seven classmates and illnesses of others, we have a greater appreciation of life.

Reconnecting with former classmates who now live in Colorado has been particularly meaningful for me. Several months ago, four of us discovered that we live in the same metro area and had a couple pre-reunion get-togethers. We are determined to maintain contact with each other and keep that Hoganite spirit alive.

I'm Interviewed by the PD Warrior

Joe Ralph, creator and author of the blog, Day By Day Adventures of the PD Warrior, published this email interview of me in September 2007.

Joe: Parkinson's Disease, like everything else in life, has varying effects on people. Most people automatically think of tremors when they think of Parkinson's, but the "PD Shake" as I like to call it, is not the only symptom of the disease. In fact, some people with PD don't actually show any signs of tremor until they are in very advanced stages of the disease. What was the first noticeable symptom of Parkinson's Disease that you experienced, the one that prompted you to seek medical attention to find out what was going on?

Kate: Before my Parkinson’s diagnosis in May 1996, I was a member of a local Toastmasters group. Toastmasters International is an organization that provides a program in oral communication and leadership training.

The feedback on speeches was always the same: “You didn’t seem nervous except for the tremor in your left hand.” I dismissed the comment, believing that the tremor was caused by public speaking anxiety.

Another member’s feedback was: “Your left arm and hand just seemed to hang there and served no useful purpose,” while another participant commented, “You didn’t seem to show any facial expression.” Their feedback prompted me to seek medical help. From then on, I affectionately referred to this group as the Toastmasters Doctors.

Joe: What went through your mind when you first received the diagnosis of Parkinson's disease?

Kate: I will always remember May 8, 1996, the day I was diagnosed with PD. My left arm hung there like a dead animal. I dropped things. People told me I had a blank facial expression. My voice was soft and raspy. Typing on the computer slowed and became punctuated with errors. A typed word such as “home” appeared as “homeeeeeeee” on the computer screen. My fingers grew minds of their own.

“I have good news and bad news,” the neurologist said. “The good news is that you don’t have a brain tumor, Lou Gehrig’s disease or Wilson’s disease. The bad news is that it appears that you have Parkinson’s Disease.”

Somehow I missed the part about the good news. I didn’t want to have anything to do with any of those dreadful diseases. Too afraid to ask out loud, I silently questioned:

Will I end up in a wheelchair?

Will I be able to work until retirement?

What about playing in the accordion competition?

Why me, God?

Joe: When someone has Parkinson's Disease they aren't the only one it affects. The disease has both emotional and physical ramifications for loved ones/family members and any other type of care givers. How has this disease affected your family, both physically and emotionally?

Kate: My immediate family consists of my husband, Tom. After 33 years of marriage, I know that it’s best for Tom to speak for himself.

Tom: PD is a disease of function. We have been very fortunate that Kate’s symptoms have been minimal compared to others. When Kate cannot function, such as when her meds are not working and her energy or voice is low, it can be frustrating. Even walking the dog or staying up late is out of the question! PD has taught me how to be more patient and go with the flow. It has also taught me the value of exercise, good health and not taking everyday function for granted. You always need a Plan B!

My biggest fear is that someday Kate’s functioning will deteriorate to the point that she will be in a wheelchair and in need of more extensive care. I have resigned myself to deal with that reality when I come to it. In the meantime, damn the PD and full speed ahead!

Joe: The disease can be devastating, but again, like everything else in life, it can also have a positive impact on a person's life. Name one positive outcome this disease has had on either you or a loved one.

Kate: Although I’ll probably never reach the point where I’ll feel “lucky” to have PD (as Michael J. Fox did in his book, “Lucky Man”), I’ve become a better person because of having it.

I am more appreciative of each day and don’t take life for granted. My new mantra is “Plan for tomorrow AND live for today.” I am less fearful, no longer afraid of trying new things.

I am more generous in helping others by writing my blog, co-founding a local Deep Brain Stimulation (DBS) Surgery Support Group, and soon I will be volunteering at the hospital, meeting with DBS patients and their families.

I am more empathetic and patient with myself and others with disabilities.

Joe: If you had one word of advice for anyone affected by this disease, what would it be?

Kate: My advice to others living with PD would be: stop concealing and start revealing.

My biggest regret along my PD path was not sharing with others about my struggles with PD. I knew that if I didn’t share about PD, others such as my husband those who knew about my PD, would bail me out by speaking for me. I never knew who knew about my secret, and what they knew.

I was ashamed about having PD as though it was my fault that I had this malady. I was living a lie. I insulted people by not sharing my life with PD with them. I deprived people of the opportunity to provide support.

In April 2005 after having PD for nine years, I decided it was time to stop concealing and start revealing. I sent an email disclosing my PD to more than 300 friends, family, work associates and hospital volunteers. I ended my “coming out” story with: “Having Parkinson’s is no longer a taboo subject for me. Please feel free to bring up the topic and ask questions. I may provide more information than you ever wanted to know.”

Stages and Progression of Parkinson’s Disease

One of my blog readers asked me the following question about the stages of Parkinson‘s Disease (PD).

“We just found out my mom has PD and have had trouble finding the 'stages' of PD we keep hearing about. Is there anywhere we can find them?”

My Response:

The three primary measures of the stages and progression of PD are the Hoehn and Yahr Staging of Parkinson’s Disease, the Unified Parkinson Disease Rating Scale, and the Schwab and England Activities of Daily Living. They can be found at the Parkinson Association of the Rockies website at: http://www.parkinsonrockies.org/progression.html

If you are asking about when your mom might die, that’s an entirely different matter. I could be flippant and say that it is just between your mom and God or that your mom will die with PD and not from PD.

Frankly, my greatest worry is when and how I am going to die. The only blog posting that I started but didn’t finish was about dying with or from PD. Until I’m more comfortable with completing this blog posting, you’ll need to talk to your mom's neurologist and/or do your own research on this matter. Or perhaps this is one of life's mysteries.

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?”

Preparing for Success with DBS

You’ve checked them out, and they have checked you out. You finally qualify as a suitable candidate for Deep Brain Stimulation (DBS) for Parkinson’s Disease, and you have decided to proceed. Now what do you do while waiting?

Get your support team in place once you have an idea about your surgery timetable. Assign someone the task of reporting back to others about your progress either by phone or by email. Have someone bring a lap top computer to send emails. Make sure that you have friends or supportive relatives during the long surgery days to accompany your spouse or loved one.

Read the article, Coping Tips from the Front Lines by Joel Davis, which includes ideas on being your own advocate.

Find out your doctor’s plan for the programming of your DBS, and occupational, physical and speech therapy if required post-DBS.

Consider listening to “getting ready for surgery” CDs for a week or two before surgery, particularly if you think you might benefit from imagery, visualization and affirmations.

If you are the kind of person who relaxes with music, ask your neurosurgeon if you can bring your carefully chosen CDs to play during surgery (particularly during the “brain part” where there is no anesthesia and only mild sedation). Be considerate of the surgery staff that must listen to your music during surgery (e.g., suggestion: no hard rock).

At any time during the surgery process and your hospital stay you don’t understand, stop the medical person until you do understand.

Don’t be afraid to ask the medical staff for what you want/need during surgery and during your hospital stay. For example, if you are on a special diet, let them know your preferences so that they can accommodate you. Sometimes your wants and needs can easily be met if they are known.

Ask your doctor’s advice on what medications to stop before surgery (e.g., some advise stopping Eldepryl (Selegiline) and Azilect two weeks before surgery).

Ask your doctor his/her opinion about taking Tenormin (Atenolol) for two weeks before and two weeks after your surgery. Some physicians prescribe it on a temporary basis as a heart-stroke protector during surgery.

If you have an overall positive experience during surgery and your hospital stay, let the medical staff know either immediately or later in writing when you are home from the hospital. Yesterday I observed a DBS patient expressing appreciation to the pre-surgery nurse for how painlessly she started her IV. The nurse seemed surprised but pleased by the patient’s comments. In the 30+ plus years she had been a nurse, she probably has received more criticism from cranky patients than praise. Pay attention to names of staff and volunteers that provides good customer service, and send a note of appreciation to them and their supervisor once you get home.

If you are traveling from out of town for the surgery:

Check with your insurance company and physician to determine if you can be admitted to the hospital the night before surgery to reduce the stress of rushing in the morning traffic to make it to surgery on time.

Check with the volunteer services/social services department at the hospital to find out if they have a list of reduced-cost lodging for your caregivers/support team to stay. If you are in need of assisted living in between surgeries, they may be able to help you with this as well. As a general rule, the volunteer services offices can be of assistance in many ways, with ideas on how to resolve almost any problem you might encounter during your hospital stay.

Before you return home, make sure that you have all your hospital records in your possession, e.g., history and physical, operation reports, discharge reports, programming and the DBS reports. It is much easier to obtain these reports in person before you leave, than trying to retrieve them from a distance by phone or mail.

And finally for all patients, I am reluctant to say this, but consider lowering your expectations. If you receive any benefit from DBS, that’s a plus. I have a tendency to be greedy and would like 100% improvement so I constantly have to remind myself that I still have Parkinson’s.

Once you feel physically able, consider volunteering at a hospital so that you too can provide a positive experience for future patients. From my own personal experience, I have found hospital volunteering to be a rewarding way to express my gratitude that I am “alive and kicking.”

This article is not a substitute for medical advice or care. I am merely a non-medical person reporting on my experiences living with Parkinson’s Disease and Deep Brain Stimulation surgery. If you desire medical care or advice, please seek it from a physician.

The Creative Healer

The Creative Healer
An Interview with Filmmaker Deborah Fryer

In recognition of her efforts in fostering understanding about Parkinson’s Disease, Deborah Fryer was awarded Accolade’s Humanitarian Award for her film, Shaken: Journey Into the Mind of a Parkinson’s Patient. Annually, this award is given to a filmmaker who makes a significant contribution to social change or a humanitarian effort. Shaken has also received numerous international awards.

Deborah has spread awareness about Parkinson’s more than anyone that I know. Her film Shaken compassionately explores human suffering and the courage of a man living with young onset Parkinson’s.

The following is my email interview of Deborah:

Kate: Why are you so committed to the Parkinson’s cause (vs. cancer, heart disease, etc.)?

Deborah: Shaken is my first independent film. I met someone my age with Parkinson’s and wanted to learn more about it, so I started researching it on the web. The more I learned, the more I realized that this is a story that has to be told. No one is talking about it the way they talk about cancer or heart disease, but it seems like about one in five of my friends has a family member with Parkinson’s.

Kate: What has been your most satisfying achievement to date?

Deborah: It means so much to me when I get feedback from people with Parkinson’s who thank me for telling their story and thank me for giving them hope. These are some of the comments I have recently received from people with Parkinson’s.

Kate: Where does your strong drive to achieve come from?

Deborah: I don’t know. A palm reader once told me that I had a very old soul from the island of Lemuria, and that my karma was to make the world a better place. She told me that I can’t stand it when there is violence, injustice, pain or suffering in the world, and that my life purpose is to tell stories that don’t usually get told for the purpose of healing the suffering that goes on in the world. I had never met this woman in my life, and she knew nothing about me, so how she pegged me so accurately, I have no idea, but she was right.

Kate: How are you able to maintain objectivity and balance in your professional and personal life?

Deborah: I don’t know that I maintain either. I work hard. I get on my yoga mat every day. I meditate and spend time with my boyfriend and my animals daily. I am still working on working less, sleeping more, and building free time into every day. As an independent filmmaker, it is hard to find that balance, and I am still very much in the searching stage.

Kate: Has any particular life experience significantly contributed to your strong sense of confidence?

Deborah: It’s all an illusion. I have good days and bad days just like anyone else. I cry when I need to. I hug my dog and talk to her when I am feeling like the biggest loser on the planet. I write in my journal. I reach out to friends. I go for a hike by myself in the woods.

I try to take the many mistakes I make as an opportunity to learn. I know I reach and aim high, and I sometimes miss the mark. It can be humiliating, disappointing or devastating. And I know that when I hit bottom, that the laws of physics and the universe say that nothing is permanent, so I know that I will be back on top of the wave before long.

And I also know that if something doesn’t work, then I can always try something else. I think my yoga practice has helped me be less attached to the outcome and more interested in the process.

Kate: If you could live your life over again, what would you do differently?

Deborah: I would go to medical school. I am so interested in science, health, healing and the intersection of those three things. I think so much of health and healing has to do with our minds and the stories we tell ourselves, and yet the miracles of modern medicine and pharmaceuticals are mysterious and fascinating to me. I would want to learn what they teach in American medical schools, and would also want to study in India and China to understand more about the eastern beliefs in illness and well-being.

Further information about Deborah and her film Shaken, can be found her website Lila Films at: www.lilafilms.com.

Happy Thanksgiving to Our Canadian Friends

October 8, 2007–My husband, Tom and I celebrated 15 Canadian Thanksgivings when we lived in Canada from 1972 to 1986. This holiday falls on the second Monday in October, unlike American Thanksgiving, which falls on the fourth Thursday in November.

Some people believe this is because Canada, being farther north, has an earlier harvest. Others think that having Thanksgiving in November interfered with Remembrance Day, a day set apart each year on November 11th to remember those who died in wars.

Thanksgiving in Canada provides an opportunity to give thanks to live in a bountiful, free country (with free health insurance), and to celebrate that day by feasting with family and friends.

Learn more about the history of Canadian Thanksgiving and how it differs from American Thanksgiving, at these websites:

Thanksgiving in Canada – What Gives?
http://www.canadafirst.net/our_heritage/thanksgiving/

and

How Much Do You Know about the Canadian Thanksgiving?
http://proudcanadiankids.ca/Canadian%20Thanksgiving%20Truth.htm#How%20much

I’m Looking Good

I’ve had so many compliments from people the past two week about how well I look, that I had to find out more about what “looking good” looks like.

Last weekend we visited our friends at the Port Townsend (Washington) Film Festival. Gayle and Bill saw me a year ago at the same film festival. They marveled at how much I had “improved” over the year. Finally, when I got them to describe improvement, it boiled down to the absence of shaking. They observed last year that my head was moving and that I was wiggling/squirming around in my chair. They were surprised to learn that the involuntary movements were dyskinesias (as a result of taking Sinemet over a period of years) and not as a result of Parkinson’s Disease. My friends said that I didn’t look like I had Parkinson’s this year, whereas last year I definitely looked like a Parkinsonian.

My friends asked how I accounted for the improvement, and I quipped, “Olga and yoga,” Dr. Olga reprogrammed the Deep Brain Stimulation (DBS) system and adjusted my medication (less Sinemet with more of other Parkinson’s meds). Yoga has helped me to stand up straighter with better posture, improve my balance, and alleviate the neck pain from the scar tissue around the DBS wires.

In addition, this past week I officially became a volunteer at the hospital where I was previously employed as coordinator of volunteers. I am developing a volunteer program where current DBS patients meet with prospective DBS patients and their families.

When taking the health screening exam to become a volunteer, the staff was amazed at how much I had “improved.” They showed me off to other staff members who all agreed that “you don’t look like you have Parkinson’s” as they remembered how shaky I was when I left my employment in May 2006. I also encountered about a dozen volunteers who worked for me in the past who were equally impressed with how I presented to them

What others need to know about me is that…

I still have Parkinson’s. It is chronic and progressive, and remission is not an option. There is currently no cure.

It takes me a long time to look good. Getting dressed, exercising and taking care of myself can be tedious and time-consuming.

While volunteering for 3-4 hours a week is manageable, working full time is utterly impossible for me with advancing Parkinson’s.

There are many invisible signs and symptoms of Parkinson’s (see The Less Visible Symptoms of Parkinson’s).

Just because I look good, doesn’t necessarily mean that I feel good. Usually if I look good (without dyskinesia) that often means I’m undermedicated and don’t feel good.

Just because I look good right now doesn’t mean I’ll look good in an hour, tomorrow or next week.

So thanks for the “looking good” compliments. I will graciously accept all that come my way.

What's Next?

Shari Caudron, my writing teacher and coach, coerced me into creating a blog that focused on living with Parkinson’s Disease (PD). l had no idea where this path would lead. I accepted her challenge with the creation of my blog, Shake, Rattle and Roll: An Insider’s View of Parkinson’s Disease, on September 27, 2006. One year later, I’ve written 120 posts (or “columns” as I prefer to call them) and received 9600+ hits from readers.

I was delighted to learn my blog is ranked #1 by the PD Blog Network, and even happier to discover that neurologists and neurosurgeons are referring their patients to my blog for information and inspiration.

During the past year, you’ve learned about my day-to-day reality of living with PD and Deep Brain Stimulation. You’ve also read about…

My husband Tom and our English Springer Spaniel, Oreo
My diagnosis of PD more than eleven years ago
Neurological testing and appointments
Deep brain stimulation surgery and being programmed and reprogrammed
Playing the accordion with dyskinesia
Yoga and dancing with PD
Inspiring people with PD

In looking ahead toward the upcoming year, my focus will be on the following areas that are often not discussed and are underreported:

• The emotional/psychological aspects of living with PD

• Care partnering (I prefer this term which feels like “we are all in this together” vs. the terms of care giving and care taking) and the impact of PD on the family

• Exercising with PD

If you have stories related to these areas that you are willing to share, I would enjoy hearing from you. Just click “Email Me” on the right hand column of my blog.

As always, thanks for your support,
Kate Kelsall