Shake, Rattle and Roll

Taking Up the Challenge

I’ve lost confidence shuffling along my Parkinson’s path for the past 12 years. Now and again, I challenge myself to do something that was easy in the past, but has become more complicated with PD. I now consider traveling alone to be challenging for me (as compared to traveling with my husband, Tom).

 

A couple of weeks ago, I traveled to Kansas City for my nephews’ graduation from Rockhurst High School. Kevin and Neil are identical twins. Aren’t they good looking young men? And smart too.

 

I drove to the Park and Ride and took the Sky-Ride bus to the Denver airport.

 

I schlepped my luggage from the bus to the ticket counter.

 

I used Frontier’s self-serve computerized check-in and walked to the security gate.

 

I had a full body pat-down because of the deep brain stimulator to my brain.

 

I flew to Kansas City.

 

I picked up my luggage at the baggage claim, found the bus to the car rental, rented a bigger car than I am accustomed to and drove to a motel in Overland Park where I stayed for three nights.

 

I visited my family and friends, attended my nephews’ graduation and completed a 5 K walk sponsored by the Parkinson Foundation of the Heartland.

 

Several days later, I flew from Kansas City to Denver repeating the same steps that I had taken when flying from Denver to Kansas City.

 

In my pre-Parkinson’s days, traveling alone was unremarkable and uneventful. Twelve years into Parkinson’s, traveling alone has become a big deal. Taking up this challenge has increased my confidence and self-esteem. Knowing that I am capable of traveling alone has given me a sense of competence and independence.

 

I took up the challenge, and I’m glad that I did!

Too Much Parkinson’s

I’m PD-ed out lately from thinking and talking about Parkinson’s 24-7. Sometimes it feels as though there is just way too much Parkinson’s in my life.

 

When I recently co-lead a PD support group, I became aware of all the tasks and skills involved in conducting an effective meeting:

 

·        Arrange a topic and/or speaker

 

·        Send out announcements of the meeting

 

·        Keep track of RSVPs

 

·        Pick up the key to the meeting room

 

·        Get the room ready and move tables and chairs

 

·        Purchase snacks

 

·        Schlep in snacks into the meeting room

 

·        Welcome and introduce new members

 

·        Introduce the speaker

 

·        Encourage those who talk too little to speak up and ask questions

 

·        Discourage those who talk too much

 

·        Keep track of and follow-up on non-verbals

 

·        Ensure that members are getting what they want from the group while keeping your own PD symptoms under control

 

·        Wind up the meeting on a timely basis

 

·        Move tables and chairs and return the room to its original condition

 

·        Return the meeting room key

 

 

So if your PD support group leader seems tired lately, you’ll understand why she may be PD-ed out. Better than understanding, is offering to share one of the specific tasks required in maintaining a meaningful PD support group.

The Show, Like Life, Must Go On

The 70 and 80-year-old singers from Northampton, Massachusetts in the documentary, Young @ Heart, have just the right qualities to make it to 100. The show, like life, must go on.

British film director, Stephen Walker shows the sassiness and struggles of a handful of the 24 choir members, spotlighting their particular idiosyncrasies, their quotable quips and their health problems to give us vibrant portraits of each.  The Young @ Heart chorus has built its reputation upon morphing contemporary rock tunes into their own musical genre.

This film is heartwarming and hilarious, not a depressing visit to an old-folks home. The Young @ Heart singers have traded their rocking chairs in for rocking out.

The singers are led by their demanding chorus leader Bob Cilman, who at 53, is a generation younger than his students. Cilman, a genius when it comes to song selection, knows just how far to push. He has the patience of a saint, yet can be a demanding authority figure and tough on them when necessary. Young @ Heart begins with Cilman preparing the chorus for a gig, which will include five new songs and mark the return of a pair of chorus veterans who had been sidelined due to health reasons.

These septuagenarians and octogenarians possess the characteristics that translate into longevity: a positive attitude, a reason to get out of bed in the morning, an appreciation of the challenge of learning new things, and the ability to adapt to change and cope with loss and death:

 

Positive Attitude

The oldsters have a sense of humor about themselves.

This spirited group of people is determined to live life to the fullest. The messages conveyed in the film include:

·        Every moment counts

·        Nothing is impossible

·        Have you hugged an old person today?

A Reason to Get Out of Bed in the Morning

The camaraderie of the fellow singers and performing for others give their choir members a reason to get out of bed every morning. They are having the time of their lives as they travel the world, entertaining audiences that range from the crowned heads of Europe to prisoners in the nearby jail. 

 

The Challenge of Learning New Things, such as Complicated Song Lyrics

Although most members of the group prefer classical music, opera or Broadway show tunes, they do punk, classic rock and a wailing R&B. They give songs whole news meanings.

Ramones' song about drug burnout, "I Wanna Be Sedated," morphs into a commentary on aging.

"Just put me in a wheelchair, get me on a plane

Hurry hurry hurry before I go insane

I can't control my fingers,

I can't control my brain!"

Prince's "Nothing Compares 2 U" becomes not a lament to lost love but a farewell to a dead companion.

Bob Dylan's "Forever Young," sung to a group of prisoners, is no longer about a parent advising a child; it's the voice of a passing generation begging the people coming along behind it to straighten out their lives.

In James Brown's "I Feel Good," the two selected to lead never get their rhythm and lyrics in sync. The male singer repeatedly tries and fails, to wrap his mouth around the two lines he has to sing. 

They’re a determined bunch as they attempt get the rattling tune “Schizophrenia” by Sonic Youth just right.

But that’s nothing compared to Allen Toussaint’s “Yes We Can Can,” which they have trouble memorizing because of tricky lyrics that repeat the word “can” 71 times in various combinations.

 

The Ability to Adapt to Change and Cope with Loss and Death

The members of this choir can see the Grim Reaper in the near distance but keep on singing.

"Did you see the white light everybody talks about?" one chorister asks another who's had a near-death experience.

"No" she replies. "I refused to look."

Two other choir members return to the group following long illnesses and are greeted with open arms. But one suffers a relapse that makes his performance at the new show they’ve been working on doubtful. In fact, there are two deaths that occur in one fateful week just before the big show. These moments are handled touchingly, and with dignity. The deaths put a damper on things momentarily. In the end the message is clear: like life itself, the show must and does go on.

For more information about Young @ Heart check out their website at: http://foxsearchlight.com/youngatheart/

Check your local listings for theaters and times near you.

 

 

Welcome Photogirl

Join me in welcoming Photogirl to the Parkinson's blogosphere.

Photogirl's new blog, PDME can be located at: http://www.pdme.blogspot.com/

Photogirl was recently diagnosed with young-onset Parkinson's Disease at the age of 33. She has a husband and three young children.

I appreciate her honest and sensitive writing and hope you will enjoy it as well.

.

Colonoscopy’s Unexpected Gift

My doctor says “You are at the age where you need to be concerned about your colon care. You need to have a colonoscopy.” I grimace. “If the first colonoscopy is clear, then you won’t have to have another one for 10 years when you are 68,” she says reassuringly. “With Parkinson’s, I don’t expect to be around in 10 years,” I state matter-of-factly. This time, she grimaces.

By the time I return home, the colonoscopy office left a voice mail indicating they were eager to schedule the procedure. I’m thinking they must not have many patients who willingly call for an appointment. I delay returning the call. The scheduler is persistent and calls me again, even though I did not return her first call.

The scheduler suggests several dates, and my responses are: “Nope, I’ll be in New York City.” “No, that date won’t work as I have a dance performance.” “No, I’m flying to Kansas City for my twin nephews’ high school graduation.” Exasperated, she says, “OK, you suggest some convenient dates.” I come up with the Tuesday after Mother’s Day.

Everyone who has had a colonoscopy tells me the same thing. “It doesn’t hurt. You’re knocked out. Don’t worry about it.” Finally, the truth comes out about the preparations being the most difficult part of the entire procedure. The medical staff also reassures me that “the patients say that the prep is the most difficult part of the procedure,” as the staff knows better than getting anywhere near a colonoscope.

I was scared of the preparation, more than the procedure itself. For the procedure on Tuesday, the preparation to get your system cleaned out is the following:

• Last meal of breakfast on Monday with no real food until lunch on Tuesday

• No medication from noon on Monday otherwise the meds might clog the colonoscope

• Only clear liquids (and this does not include California Chardonnay) from noon on Monday until 6 AM on Tuesday

 • No liquids of any kind after 6 AM on Tuesday

• At 6 PM on Monday, begin downing at the rate of one glass every 10 minutes, nine glasses filled with 8-ounces of an atomic-powered laxative; totaling 72 ounces

• Set the alarm for 4 AM on Tuesday and drink four more 8-ounce glasses, totaling 32 ounces, before 6 AM

• Bowel movements start about an hour after the first glass and last for 6-8 hours

• You may feel bloated, chilled or nauseated.

• “If you start vomiting, stop drinking the solution for 30 minutes then restart

• Warnings that if you don’t comply with any of the above, then the procedure may need to be rescheduled!

Being a compliant patient, I follow all the above. In fact, it is noted in my chart that “the quality of the prep was excellent.” Being compliant results in me feeling like I have food poisoning, I am dehydrated, and I get very little sleep that night. Also without Parkinson’s meds for nearly 24 hours, I am slow and shaky.

I wake at 4 AM on Tuesday to discover that it’s a cold rainy day in metro Denver. It’s a good day to stay inside and have a colonoscopy, I tell myself. I discover that Cindy, the Medtronic representative for deep brain stimulation, is at the procedure to zero out the stimulator before the colonoscopy and then turn it back to the correct settings afterward. Cindy arrives at the hospital right on time at 7:30 AM after driving 50 miles in rush-hour traffic on rain-soaked freeways.

Right before I change into the hospital night gown for the procedure, Cindy turns off the stimulator by putting the control device on top of my chest. The pre-op staff look inquisitive, and we hear mumblings of "what are they doing?". We say that I have an implanted deep brain stimulator for Parkinson’s Disease, that it’s like a pacemaker to the brain. They scratch their heads as though we are speaking a foreign language.

The colonscopy procedure itself goes "without incident" I am told. Nobody wants an incident.

I am in a sedated fog when Cindy returns after the procedure to turn on the stimulator to the same settings of my last programming session of March 4. I think these settings are close to optimal for me right now.

When I visited New York a couple of weeks ago, the security checks must have inadvertently triggered a change in the settings. Since New York, my voice has been devastated (see Giving a Voice to Parkinson's).

However, when I am discharged from the hospital after the colonoscopy, I notice that my former strong voice returns. With a return to the settings of March 4, getting my voice back is colonoscopy’s unexpected gift.

By the way, the results of the colonoscopy indicated no polyps and no cancer. Yipee!!

Related Link:

Colon Test Not Quite Fantanstic Voyage by Linwood Barclay

Choices, Choices

Choices, Choices…
By Terri Reinhart
Copyright © 2008

Years ago, while teaching kindergarten, I caught a couple of the boys eating iris blossoms on the playground. A frantic call was made to the Poison Control Center and I found out that iris blossoms were not on the list of dangerously poisonous plants. I was asked to watch them, however, as there really wasn’t much information listed about the effects of consuming this particular flower. Not many people would consider doing this. In fact, probably the only people who have ever experimented with the wild notion of eating irises would be five year old boys who wanted to make purple spit. I passed that bit of information on to Poison Control and for the next few minutes, I couldn’t make out anything they said. Maybe it was a bad connection.

I thought of this story not long ago when I was prescribed a new medication. Among the side effects was that it “turns all your bodily fluids orange”. COOL! If only I had that medicine all those years ago, I could have been the coolest kindergarten teacher on the planet – the one with orange spit.

My doctor is extremely good at explaining medications and their side effects. This is good because my body tends to be just sensitive enough that if there are side effects, I’ll have them. It’s nice to have at least a little bit of warning. And if they are not explained to me in a healthy way, I tend to freak out. That happened a while back with a (now former) nurse practitioner who prescribed a drug that, when I read the literature, I found had a possible side effect of “falling asleep without warning while doing routine daily activities, such as driving.” As I was then driving 17 miles on the freeway each way to work, I called and talked with the nurse practitioner. She tried to reassure me by saying, “Don’t worry, if it happens once, we’ll take you off of it.” I told her that if it happened once, it probably wouldn’t be an issue. After that, I went through my neurologist whenever I needed to ask about medications.

My neurologist, by the way, is a lovely woman who listens to me and respects me as a person. She is obviously very intelligent, articulate, and I am sure she is one of the top doctors in her field and deserves a raise. If I have DBS brain surgery in the future, she’s the one I will trust. She also reads these articles. Did I mention how intelligent she is?

So, at my last visit, I was prescribed a couple of new medications and my doctor very carefully went over all the side effects with me. “Oh, and it can cause compulsive behaviors, so if you experience anything like that, please let me know and we’ll adjust your dose.” She went on to say that while it sounds humorous, she knew of patients who had spent all of their savings on shopping sprees while on this drug. The compulsive behaviors could include compulsive gambling, shopping, or even sexual behavior. She also said that some people try to direct this compulsiveness into a particular area, such as crafts. They might work on their crafts to the point where they forget to feed their family.

Oh boy.

Of course, if that last one is how this manifests with me, I’m okay. My family wouldn’t notice. I’ve been doing that for years. But it made me wonder. Could I possibly direct compulsive behavior in a way that it would be beneficial for me? What would I choose?

I’m afraid that gambling and shopping are out. We definitely can’t afford that. I will give all my credit cards to my husband and also have him change the passwords on my internet accounts so I cannot click and spend.

Compulsive sexual behavior is also out. That would be way too complicated and way too much work.

My kids would probably prefer that I become a compulsive baker and spend hours every day baking cookies and cakes. The only problem is that compulsive baking would lead to compulsive eating which would ultimately lead to the need for buying bigger clothes which would lead to compulsive shopping which is out already. Sorry kids.

My husband might suggest that I become compulsive about cleaning. This actually sounds good and if I could pull it off, that might be the way to go. I’m not sure that we can direct compulsive behaviors to something that is totally against our nature, but it’s worth a try. If nothing else, I would be busy for months. The thought that someday MY house could be sparkling clean and neat with no piles of papers anywhere and nothing out of place…? I’m sorry. I’m just having a hard time even imagining that one.

Perhaps I’ll try compulsive gardening. It wouldn’t matter how many vegetables we eat and that would save us money in the long run. And I would love to see neat rows of plants with no weeds growing in the pathways. I would also have our lawn and flower beds perfectly manicured. This sounds good. I’ll have to let you know how it goes.

Oh, and we have a large bed of iris that desperately needs attention, too.

Are You Worried You Might Have Parkinnson's?

When I was volunteering at a local health fair a couple of years ago, people seemed reluctant to approach the booth with information about Parkinson's (the same way that they avoided the booth about alcoholism and drug addiction). No one wants to consider that he, she or a loved one might have a chronic, progressive, incurable disease like Parkinson's. However, I discovered the following questionnaire which helps educate people about Parkinson's in a non-threatening way.

Parkinson’s Disease Questionnaire from the Parkinson Association of the Rockies

If you shake or tremor and you want to learn whether you have Parkinson’s Disease and not Essential Tremor, please answer the following questions. If you don’t shake or tremor but think you may have Parkinson’s Disease, you may also answer this questionnaire. Note - 30% of Parkinson patients do not shake or tremor, or rarely shake and tremor. If you don’t shake or tremor but you have a relative who has Parkinson’s Disease, you may also wish to complete this questionnaire.

Questions:

1. Do you have trouble arising from a chair? О Yes О No

2. Has your handwriting become smaller? О Yes О No

3. Do people say your voice has become softer? О Yes О No

4. Is your balance poor? О Yes О No

5. Do your feet ever seem to get stuck to the floor? О Yes О No

6. Do people say your face always seems sad? О Yes О No

7. Do your hands or legs shake or tremor? О Yes О No

8. Do you have difficulty buttoning buttons? О Yes О No

9. Do you shuffle your feet when you walk? О Yes О No

10. Do you take tiny steps when you walk? О Yes О No

11. Has anyone asked if you have Parkinson’s Disease? О Yes О No

12. Have you ever taken L-dopa, levodopa, Sinemet or Atamet? О Yes О No

Scoring:

Add up all of your “Yes” answers.

1 yes = 8% 7 yes = 58%
2 yes = 16% 8 yes = 66%
3 yes = 25% 9 yes = 75%
4 yes = 33% 10 yes = 83%
5 yes = 41% 11 yes = 91%
6 yes = 50% 12 yes = 100%

Score: Interpretation:

0 – 50% Low possibility of Parkinson’s Disease

51-75% Moderate possibility of Parkinson’s Disease

76-100% High possibility of Parkinson’s Disease

Without seeing you and examining you, it cannot be determined whether your shaking or tremor could be related to Essential Tremor or Parkinson’s Disease. This can only be determined by your physician. You must discuss the symptoms that you are experiencing with your physician.

Giving a Voice to Parkinson’s

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

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

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

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

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

May Milestones

“My path has not been determined. I shall have more experiences and pass many more milestones.”
Agnetha Faltskog

Significant personal milestones in my adulthood have occurred in May. These dates in May are forever branded in my brain:

May 19, 1972: Obtained my Master’s degree at the University of Wisconsin in Milwaukee

May 23, 1972: Immigrated to Canada

May 29, 1972: Began my career in Windsor, Ontario

May 11, 1974: Got married in Milwaukee, Wisconsin

May 8, 1996: Diagnosed with Parkinson’s Disease in Westminster, Colorado
See The Answer

May 4, 2005: Had Deep Brain Stimulation (DBS) surgery in Sacramento, California
See Uneventful Brain Surgery

May 5, 2006: After a year of programming sessions, the programmers finally admitted that “we can’t help you with this” or as I interpreted it, "this is as good as it gets."
See Get with the Program

May 31, 2006: Ended my career in Denver, Colorado because of Parkinson’s disability
See PD Went to Work

and It’s Not Working

May 14, 2007: Began DBS reprogramming sessions with Dr. Olga
See Get with the Reprogramming

Each event has its own story. But May 4, 2008 being the third anniversary of my DBS surgery, I’d like to reflect on the question that people eventually ask: “Would you have DBS over again?” Up until about a year ago, the answer would have been a definite “no.” In fact, I was the only person that I knew who wouldn’t do it over again. I longed for the positive benefits of DBS. I hated having the DBS system inside me and went to a neurosurgeon and asked for it to be removed. Shocked by my request, he referred me to the local expert on DBS programming, Dr. Olga.

Dr. Olga has a passion and knack for DBS programming. This DBS Wizard doesn't give up on her patients. Her compassion and competence has been inspiring.

Now my answer to the “Would you do it again?” question is “yes” providing a skilled DBS programmer is close at hand.

I look forward to many milestones to come.

Baby Stepping It All the Way

I am overwhelmed by the 10,000 persons with Parkinson’s (PD) and their supporters participating in the PD Unity Walk last Saturday, April 26, 2008, at Central Park in New York City. Outside the park, New York is bustling, and people move fast. Inside the park at the walk, people take baby steps.

I long for the days of old, running 10 milers in the Canadian Rockies and 12 kilometers races at the Bay to Breakers in San Francisco and Bloomsday in Spokane. I reminisce about the long bike rides that Tom and I enjoyed in California, Vermont and Wisconsin.

I am confined, restless and eager to get moving. I feel guilty that I can so easily walk, while others with PD have major mobility and balance problems. I fantasize flying above the Baby-Steppers in Central Park but instead I become one of them, baby stepping it all the way. But at least we are out there taking steps, albeit slow ones.

Julius Erving said, “To be great we need to win games we aren't supposed to win.” We take baby steps to win the biggest game of our lives - conquering PD.