Carina And Her Care Partner Gramma

 



Book Two in the Shaky Paws series, Carina And Her Care Partner Gramma, will be released in the near future.  Once again, it will feature illustrations by Alison Paolini.

The first book, Carson And His Shaky Paws Grampa, was designed to be a “conversation starter” for adults to use with children for discussion regarding serious illness.  There were general references to Parkinson’s (PD) symptoms and the deep brain stimulation therapy that I had to “fix” my tremor.  The non-specific dialog was intentional so that the book might be helpful relative to a variety of different illnesses.  Two additional Shaky Paws books are planned.

Carina And Her Care Partner Gramma was written to address PD specifically and to provide a communication tool for Persons With Parkinson’s (PWP’s) to use with their children or grandchildren.  This book provides much more detail specific to PD symptoms and mentions important issues in the “PD world”, including deep brain stimulation therapy, the importance of exercise, and the need for patient participation in clinical research studies. 

This book also emphasizes the importance of care partners.  Care partners are most often women (since the majority of PWP’s are men), but there are also men, family members or friends in this difficult and demanding role.  We tend to focus on the challenges faced by PWP’s, which is understandable.  However, PWP’s owe a huge debt of gratitude to these dedicated individuals who do so much with, in many cases, far too little recognition or expression of appreciation.  Further, it is important that resources be devoted not only to education of care partners, but also to counseling and other support strategies to protect their wellness.

Carina, whose middle name is Marie (the same as Linda’s mother, Ruth) and my wife have had a special relationship from the start.  Shortly after she was born, we both noticed how much she seemed to resemble Ruth.  We also realized that Carina’s parents were with us when we visited Ruth in the hospital shortly before she died nine months before Carina was born.  As she grew older, it was clear that Carina and Ruth share some common characteristics.  It is comforting to think that Ruth’s spirit lives on, somehow, through Carina.

The events and communication described in this book are depicted, for the most part, the way they actually occurred.  I am sure Carina has not retained all the detail described (she is only six years old), which raises the point I made in the first book. As parents and grandparents, you know your children and grandchildren best, and are best equipped to decide what to tell them in these situations.  Linda and my strategies for communicating with our grandchildren continues to be adjusted based on our perception of each child’s level of maturity and readiness to have this kind of information shared with them.

I have, once again, included a page that addresses our faith, which continues to be a great source of support, hope and comfort for us.http://www.innovopublishing.com/innovo-store/digital-titles/product/343-carina-and-her-care-partner-gramma-by-kirk-hall-hardback.html

DENVER CLINICAL RESEARCH FORUM

Clinical Research in Colorado - It's Not Too Late to Register When: Saturday, April 20 | 8:30am - 1:15pm Where: Mile Hi Church, 9077 W. Alameda Ave., Lakewood, CO 80226 To register please visit bit.ly/coloradoclinicalresearch or call (303) 830-1839 Forum attendees will explore the inroads being made in Colorado towards new treatments and therapies that may redefine care for Parkinson's disease. By attending the Clinical Research Forum: Parkinson's Research in Colorado, you will have the opportunity to learn more about available clinical trials for various modalities of treatment including medications, alternative therapies and surgical treatments. Learn how you, as a clinical trial participant, are protected. Join the open discussions with trial participants and family members about how they decided to participate in clinical trials. Learn how to register for the Fox Trial Finder through a representative from the Michael J. Fox Foundation. Talk with the research coordinators one-on-one to learn more about the available opportunities to join the initiative towards better treatments and the eventual cure for Parkinson's disease.

Go For It 2

We have continued our "globetrotting" in 2013.  The first half of February was spent on a road trip to LA where we watched the Super Bowl and celebrated birthdays with Linda's brother and sister-in-law (decorum does not permit me to mention their ages which are 67 and 60 respectively).  We enjoyed riding our bikes on the LA Beach bike path from Redondo Beach to Manhattan Beach past El Segundo and Playa Del Ray to Marina Del Ray and back (about 20 miles round trip).  Lots of beautiful scenery at the beach as always (woof!) and great exercise.

We made a couple stops on the way to Phoenix, first at Riverside to see the historic Mission Inn which first opened in 1876.  We enjoyed the hotel's beautiful architecture, colorful gardens, impressive fountains and water features and old world charm.  

Next, we stopped for the weekend in Palm Desert, where we spent time at a street fair loaded with interesting booths and a golf manufacturer exhibition (I snagged a deal on a new pair of Foot Joys!).  Enjoyed an assortment of drinks and appetizer's at a cool place in  La Quinta called The Hog's Breath.

We flew to Maui with close friends Sven & Gunnel Dahlqvist (a nice Irish couple). We caught a luau one night at the Grand Wailea.  The hotel is over-the-top in its' grandeur, starting with the waterfalls in front of the hotel and features a small chapel that is a 

favorite for romantic Hawaii weddings.  If you are interested, be ready to pay big time for the wedding and hotel stay, though there are packages available (including one for renewal of vows).  We also took a combination snorkeling, whale watching, and turtle   

encounter cruise.  We did see many whales (moms, babies, & "escorts") and a few turtles, but the highlight of the trip was when a trio of whales (as just described) surfaced about twenty feet from our boat!  And we had great views as were sitting in the bow area.

We also took a drive on the "Road to Hana", a 68-mile (one way) stretch of two lane road (which frequently narrows to one lane at the many bridges we crossed) filled with non-stop curves and gorgeous views of the north shore, waterfalls, and tropical rainforest.  

The paved road ends shortly after Haleakala National Park, but there is a bumpy dirt road for adventurous 4-wheelers that provides a shorter ride back to the Wailea area.  The pools, waterfalls, and the dormant volcanic mountain the park is named after provide spectacular scenery at the park.

We are leaving tomorrow morning for five days in Laguna Beach, CA with our older son and his four kids (his wife has to work-shucks!).  We will be living in the lap of luxury at the St. Regis Monarch Beach Resort at Dana Point which was voted  one of the "Top 25 Hotel Spas in the World" by Travel and Leisure magazine.  We are looking forward to spending time with our son and grandchildren (2 of each gender, ages 5-9).  We will back home for Easter Sunday.

On April 11 we will drive to San Antonio to spend four days with our younger son who will be flying in from Shanghai, where he and his family are living for (at least) two years, to attend the National Science Teachers Conference.  We are ecstatic to have that time with him.  We will be staying in the Riverwalk area which we have heard good things about.

Of course, an important part of "Going For It" for me is continuing to seek ways to improve my quality of life in the face of PD and accompanying cognition issues.  I am happy to report that I am experiencing noticeable improvement since adding Namenda to my regimen over a week ago, especially in the "acuity" department.

Angel's Wings II

Last April I wrote an article called "Angel's Wings" which some of you may have seen.  I tried to explain why I didn't feel I could take credit for some of the great things that were happening in my life.  As the current year comes to an end, I have been thinking about all that has transpired.  Some times, I feel like I am dreaming and hope I won't wake up.

It started in February when I visited the Muhammad Ali Parkinson Center to make presentations to their support groups regarding my PD journey, advocacy work, and children's book.  This was enough by itself, but then the local Fox TV station showed up at one of the presentations to interview me!  I also was invited to present to the Medtronic folks in Phoenix that design and produce deep brain stimulation (DBS) equipment to help them get a feel for how their work is making a difference in patient's lives.

In April, I was given the honor of making a patient presentation at the April "Triumph" fundraiser breakfast.  This gave me the opportunity to tell the Denver PD community and it's supporters about my advocacy work and how I am trying to make a difference.  I was blown away by the graciousness and appreciation shown by these folks!

In early June, I participated in the PAR Vitality Walk at Washington Park with Linda and friends from my Highlands Ranch support group.  This year I was happy to be joined by my entire family including my boys (Kevin & Brian), their wives (Christa & Sybil), and six grandchildren (Carson, Doug, Dani, Carina, Kaya, & Bryson)!  Needless to say, I was thrilled to introduce them to my friends, doctors, and more.  I appreciated so much their show of support for me and the PD community!

Linda and I had applied for the second time to participate in the Parkinson Disease Foundation (PDF) Clinical Research Learning Institute.  We had the honor of being chosen to participate in their training session in July in California.  It was a wonderful opportunity to meet and get to know the PDF team, fellow advocacy trainees, advocacy alumni, and participating doctors there to present.  Among them, my own doctor, Benzi Kluger from University of Colorado Anschutz Hospital!  Linda and I are excited by the important multi-faceted work PDF is doing to educate and encourage participation in research by PWP's and care partners.  We were proud to join the ranks of official "Research Advocates" working with doctors, researchers, support groups and media across the U.S.

We worked with PDF in the subsequent months to "get up to speed" and apply our training.  However, I must admit that I started to feel as though the variety of advocacy opportunities that had presented themselves over the last year were a "thing of the past". I was wrong.

Before Thanksgiving, I got a call from a marketing contact I had met with Medtronic.  Much to my surprise, she asked if I would be willing to be the subject of a photo shoot to take place in NYC in December.  Seems that Medtronic had decided to develop a marketing campaign to communicate with doctors, hospitals and prospective patients.  I was amazed, but honored, that they wanted me to be involved in this way.  Once again, I was given the opportunity to "make a difference" (albeit in a different way) by helping encourage prospective patients to consider and learn more about deep brain stimulation (DBS) to enable them to make an informed decision regarding whether it is something that  would be right for them.

Ending the year on a surreal note, I had an inspiration while working out for a "PD theme song" of sorts by "adapting" an existing song by a popular artist that might be a source of acknowledgement, support, and encouragement for PWP's and care partners.  Additionally, it could be a vehicle for helping the general public understand the challenges of PD a little better.  All of this is amazing enough, but, with no previous experience, I actually wrote the new lyrics myself in a total of about 45 minutes!  I am in the process of exploring how this might take shape, but regardless of the outcome, I know I have been given a special gift.

I have said on a number of occasions that, in the face of a challenging illness, I have been given the opportunity to do what I was meant to do and be who I was meant to be for the first time.  For this to happen at this point is both ironic and miraculous.  There is no way that I will be convinced that all this is coincidental or "good luck".  It is hard to find the right words that won't sound egocentric or vain because I would hate to be perceived that way.  For some reason, God has chosen to give me these gifts. 

Last, but far from least, we have our son, Brian, and his family home from China for the holidays!  We have had a wonderful time, including a full family trip to the mountains for dogsledding! 

Surely the presence of the Lord is in this place!  Happy New Year and God Bless!

The Elephant In The Room: Snapshot

I suspect that there may be some curiosity about how I would describe the specific nature of these cognitive problems and what they feel like.  Once again, what I am describing has been characterized by my neuropsychologist as amnestic mild cognitive impairment (aMCI).

Here is how I would describe what I have been experiencing:

·         My dreams for the past four years are often "vivid" or “unusual” and are sometimes scary  where I am attacked by animals or people and wake up fighting them off.  I would also describe some of them as feeling like those we have all had when we have a fever.

·         I get tired easily, especially following periods of concentration, and take at least one nap daily.  This is not necessarily related to the cognition issues as many with PD experience this.

·         I am unable to keep track of planned events without the help of my wife, reminder lists, and our appointment book.  I also am terrible at remembering names.

·         I have trouble with tasks that are at all complex in nature.  My wife has taken over all matters related to preparation of our tax files for our accountant.  I bought a laptop computer a few months ago and was intimidated by the setup process, but finally got it set up with help from my brother-in-law.

·         I have described the way I feel when awake as “mildly to moderately inebriated”.  As a result of this and my fatigue problem, I drive very little and never with any of our six grandchildren in the car.

·         I can remember things during the night that I couldn’t during the day.  I assume that this is because there is very little competing traffic at that time.  I got a voice recorder for Christmas that I am going to keep by the bed in order to capture anything that seems important.

·         When I can’t remember something during the day, I sometimes remember within the next few minutes or hour.  Cues or hints usually help. 

·         I am still able to discuss some fairly complex subjects with some effort.  These may be things that have to do with my business experience from years ago or current economic or political subjects.  The key factor seems to be that they are things I have thought about a good deal and spoken about in the past.  I was able to make PD advocacy presentations or speeches and answer interview questions earlier this year, but am not confident that I could do that now.  I am forced to read things I have written down at this point.

·         I use a timer to help me remember to take my pills.  If my timer goes off, I have to take the pill right away or I will forget, usually remembering up to an hour later because I feel crummy from not taking the pill.

·         I have been describing the way I experience time (for about the last year) as ethereal.  That is the best word I can come up with.  It just doesn’t seem as “finite” as it used to.  Periods of time go by inordinately quickly.  In addition, it is hard for me to remember what I did during those periods of time.

·         I have trouble remembering what day of the week it is, let alone what day of the month.

·         Sometimes when I wake up, it feels like I am still asleep, even though I know I’m not.  I have a feeling that, at some point in the future, the lines between sleep and wakefulness will become increasingly blurred.

I really don't share these things with the intent of being depressing.  I suppose it is my natural

tendency to want to understand things that makes them interesting to me as well.  Meanwhile,

life is good!  In fact, it is great!  It is the day after Christmas and my son and family are home

from China for Christmas.  Tomorrow we are taking our whole "gang" dog sledding up in the

mountains!

A Christmas Poem

SING OUT

by Alison K. Paolini (illustrator for the Shaky Paws series)

Santa and his merry group

Sped ‘round the world with a sleigh full of fun

It was a cold dark night

He wrapped his muffler tignt

And he didn’t want to miss anyone.

The reintdeer shivered,

And they put mittens on .

Santa had to chuckle

To see them so.

He called to them encouraging words

And they all sped up a little faster,

Don’t you know.

As they rushed through the night

Raced with all their might,

And left toys and goodies oer the earth

Another child was born

As night turned into morn

And the world does celebrate his birth.

So as you wake and see the children

Open gifts of love and kindness

Praise the Lord and sing out loudly

Celebrate with song and feasting

‘Cause this day is doubly blessed.

THANKS FOR YOUR INTEREST!

                                  

As the year draws to a close, I want to thank the people from all over the world who have taken the time to visit my "Shaky Paws Grampa" blog.  I didn't undertake this with any huge expectations, but in hindsight, I have spent a fair amount of time writing the 44 articles that are posted.  What started out as an avenue to communicate information regarding my book has morphed into an opportunity to address any subject that appeals to me related to PD.  I try to make the articles interesting, informative, and, at times, entertaining.  There are times when they are straightforward and factual, express my opinion, or provide insights into my personal life.

As a result of the book, I have had the opportunity to communicate with thousands of people through presentations, this blog, and media, adding my small (but passionate) voice to those of many others helping create awareness and "spread the word".  I am encouraged that many people from around the world have shown interest:

United States	2460
Russia	184
United Kingdom	149
Germany	97
Ukraine	80
France	65
Canada	51
Israel	29
Australia	23
China	21

My most popular articles have been (based on # of visits):

• Living in the Moment
• KOA Radio Interview
• Parkinson's and Stress
• Fatigue and Parkinson's Disease
• Deep Brain Stimulation
• Parkinson's and Dementia
• An Unexpected Journey
• Carson And His Shaky Paws Grampa Press Release

Again, I appreciate the interest that has been shown and encourage you to drop in periodically to see what's on my mind.

Merry Christmas & Happy New Year!!!

Kirk Hall

Shaky Paws Grampa

An Unexpected Journey

My favorite book and movie is Lord of the Rings.  I also enjoyed The Hobbit and am looking forward to seeing the new movie in the near future (by the way, Lincoln is a must-see).  The subtitle for the new hobbit movie is An Unexpected Journey.  I had one of my own this week.

                                          

I have met quite a few people with Medtronic, a prominent company in the world of medical device technology and therapies including deep brain stimulation (DBS), over the course of the last year.  This was a direct result of my book, Carson And His Shaky Paws Grampa, which included my own experience with DBS.  Before Thanksgiving, I got a call from the corporate marketing manager asking if I would be willing to participate in a photo shoot in New York that would make me the "DBS patient face" for a new marketing campaign.  I told her I was interested so we communicated over the course of the next couple weeks before finalizing a plan for my wife and I to come to New York (I no longer travel alone due to PD) for two days during December.

It was a trip down memory lane for Linda and me when we arrived at LaGuardia airport three days ago.  We flew in over the U.S. Open Tennis Center, a place where we had spent a lot of time during the eleven years that we lived in North Jersey and I worked in Manhattan.  We also flew over the new Mets Stadium (right next door to the old one).  We (we have two sons) were big fans of the Mets, Giants, and Rangers.  We had also spotted landmarks we recognized including various bridges, the Statue of Liberty, Ellis Island, and the new World Trade Center tower, where large cranes were poised to complete the final step of construction, the placement of a large spire pointing defiantly to the heavens.  I worked at American Express directly across from WTC1 when the first terrorist bombing took place back in 1993.  Like most Americans, I am still in mourning as a result of the tragic events of 9/11, which had a deeply personal impact on me.

                                             

We stayed in a nice hotel in Greenwich Village overlooking the West Side Highway, the Hudson River, and the High Line, and old railroad bridge being transformed into a walkway dotted with gardens.  We were struck by how much construction we saw everywhere, evidence of an ongoing metamorphosis taking place in the city.  It was a very chilly day, but a few hardy souls skated on the small rink in front of the hotel.  We had dinner that night with folks from Medtronic, their advertising agency, and the photo studio to discuss the plan for the next morning.  I should mention that the process was not new to me as I had worked with agencies and photo studios in my position as Merchandising VP for the Amex direct mail catalog.  However, I had never, nor did I ever expect to be, the subject of a photo shoot myself.

Linda and I rose early the next morning to shower and pack so that we could be downstairs for the short trip to the studio only five blocks away.  Once there, I was directed to a corner for a makeup and hair session.  I worked with two gentlemen who were obviously pros at their work.  One mentioned that he did women's skier Lindsay Vonn's makeup for her.  Next I spoke with the photographer about the logistics of the shoot and what they wanted me to do and the marketing people filled me in on the marketing plan.  I was to be the "patient face" of a new deep brain stimulation campaign targeted to doctors, hospitals, and prospective patients.

I had never imagined that the shoot would be physically challenging, but I was wrong.  Without going into too much detail, they wanted to take pictures of me lunging forward with one leg into a semi-squat position and pretending to break an already broken pole  over my knee while looking directly at the camera.  The photographer, an interesting young man from Norway, wanted me to try a variety of facial expressions, such as happy, proud, satisfied, determined........, to see what worked best.  If you have never tried this, it is not easy.  I had my wife stand next to him as he took the photos since I am used to making all kinds of faces at her (I have had 43 years to practice).

                                           

We kept this up for two hours with a few breaks for me to recover, them to review the shots taken, and one clothing change.  After a while, my left quad, which was getting the brunt of the workout, started to tighten up.  The makeup guy applied touch up's more and more frequently as I started to perspire as a result of the physical work and bright light.  I was pleased that my balance (not a strong point for most with PD) was not bad at the outset.  However, as we got deeper into the session my poses became more and more like Chevy Chase slapstick.  Thankfully, they assured me when it was over that they were pleased with the results.  They even took a shot of Linda and me together (which they will send us) as a momento.  They told me afterward that it was OK to talk about what took place, but I don't want to be the one to introduce the details of the campaign.

When we returned to the airport for our trip home, I was surprised by how totally exhausted I was, not to mention the throbbing in my left quad.  Needless to say, I have a heightened level of respect for photography models.  All in all, it was quite a memorable experience.

Brain Donation

I think I may have hit a new low in terms of writing depressing articles for my blog.  But seriously, this is something many with PD would like to know more about.

I have never been thrilled with the idea of donating body parts following death, though I always understood the need.  That has changed over the course of the last few years in a way that seems consistent with my desire to "make a difference".  Like many with PD, I have become interested in donating my brain for PD research (preferably, after death).  After all, what good is it going to do me after I am gone anyway.  My wife would probably say that it isn't doing me much good now (just kidding).  

There is an excellent article on this subject of the Parkinson Disease Foundation website at 
http://www.pdf.org/en/parkinson_brain_donation.

I found that many of the alternatives for donation involve a payment that can be substantial (sort of like shipping & handling-weak attempt at humor which this article desperately needs).  I was able to find an option that did not involve a charge at:

Human Brain and Spinal Fluid Resource Center

VA Greater Los Angeles Healthcare System
West Los Angeles Healthcare Center (127A) 
11301 Wilshire Blvd
Los Angeles, CA 90073 
(310) 268-3536 - Bank Office 
Email: brainbnk@ucla.edu

Contact them if you would like to explore this option.

The Elephant in the Room: Choices

So what do I know specifically about the progression from amnestic mild cognitive impairment (aMCI) to Parkinson Disease Dementia (PDD)?  The feedback I received from my neuropsycholgist almost three years ago is that about 25% stay the same and "less than that" improve.  I have had strategies in place to deal with conditions that can result in improvement (taking anti-depressant medication, raising my vitamin B12 & D-3 levels, and taking COQ10 & acetyl l-carnitine, both anti-oxidants linked to brain health) for about three years.  While some of these were clearly beneficial, the fact remains that I have progressed to aMCI.  I have also learned that it is estimated that 10-15% of those with aMCI progress to dementia annually.  The bottom line is that my best guess is that there is (at least) a 60%+ chance that I will progress to dementia in the next five years.  I certainly hope that doesn't happen.

Some may wonder why I put myself through this exercise.  Clearly, there is a fair amount of SWAGing (scientific wild ass guessing) going on here.  It may appear that I am masochistic.  The first and foremost reason is that it is important to me to know as much as I can about all aspects of PD is so that I can make a variety of plans based on different plausible scenarios.  This also allows me to advocate for myself more effectively regarding my healthcare.  I hope that this will reduce the burden on my wife in the future.  

Armed with this unsavory information, I have had some choices to make.  Do I simply sit around feeling sorry for myself or dig a hole and jump in?  Of course not!  The path I have chosen is to remain engaged in ways that are important to me.  I received the following update from Johns Hopkins this week:

"Staying mentally active by engaging in activities that challenge and stimulate the mind may be a key factor in maintaining memory and other cognitive skills, according to research from The New England Journal of Medicine and the Mayo Clinic."

Apathy is a problem for many with PD without adding possible draconian (sorry for the big word, but I do love it) outcomes to the mix.  As I wrote in an earlier post titled "Having Parkinson's Isn't All Bad", I decided a few years ago that I wanted to spend time trying to help others affected by PD.  The research I had done put me in a position to share information with PWP's and care partners that might be helpful to them.  The articles I have posted on this blog since then hopefully demonstrate my commitment to this type of activity.

In particular, I plan to stay engaged in activities about which I am passionate as long as possible.  I believe that staying connected in this way is important (see Top 10 Recommendations for PWP's).  I just completed a project along these lines that I will share.

Towards the end of this past July, I learned about a patriotic fundraiser concert called "Homeland" related to the Waldo Canyon fire in Colorado Springs being planned by the Tri-Lakes Music Association.  I had participated in their Christmas cantata programs in Monument while living there starting in 1998.  The founder of this group, Robert Manning, is  a motivated, fearless, caring, and musically-talented individual as well as my former neighbor.  These programs feature a choir and full orchestra who participate on a volunteer basis.  I participated in one of their three concerts and found it to be an extraordinarily moving experience.  Afterward, it occurred to me that many of the songs in the program were ones we had performed in my community chorus at Gleneagles Village(GEV) in Highlands Ranch.  I asked Bob if I might be able to borrow the program materials (which included music books, DVD with professionally produced audio and video tracks, rehearsal CD's and more) for use by my chorus without violating copyright laws.  To my surprise, he told me that he had inquiries along this line in the past and could loan the materials to one person at a time (in this case, me)!  I took the idea to our chorus and they loved the idea, so we started work on it in August.

Here is an email I sent to Bob following the concert program that was held at our community clubhouse on November 10, 2012:

Hi Bob-

Bill and/or JoAnne will be dropping off the materials you so generously loaned me for Homeland. They participated in our program last Saturday at the GEV clubhouse. We started working with the practice materials in August and rehearsing in September. I underestimated how challenging this would be on a number of levels. We ended up using a large projection TV, amp and speakers from a chorus member, sound board and monitors from the son of a member (who ran the system for the program). The last piece was added after our "dress rehearsal" last Friday.

Some time in September it became obvious that I was going to have to conduct the program, which I did. However, this was a real challenge due to the various PD-related issues I have with cognitive slowing, multi-tasking, etc. However, everyone had worked so hard and they were so enthusiastic that I kept pushing on. Also, the word had gotten out to the community and there seemed to be some excitement at that level as well.

We were able to add the sound board and monitors to the mix in late October, which helped a lot. However, I began to realize that some of the music was subtle enough (especially in the last 3 songs) that I could really use a direct feed to allow me to hear through ear buds or headphones. Linda and I were gone to Buffalo for a week up until the Wednesday before the program. I was able to borrow just what I needed from the music director at my church (part of a new $800 system). I tried a wireless headphone system provided by a member at our dress rehearsal, but was unable to use them due to interference. As a result, the final rehearsal was far less than perfect with multiple stops and starts. Following the rehearsal, I showed our sound guy the product I had borrowed from my church and he was able to hard wire it from the sound board to the connection which I placed on a tray table I had set up next to the music stand I was using it to conduct. It worked perfectly and used ear buds so that I could listen directly to the music through one ear and hear the choir through the other. Still, we had never rehearsed the program without having to stop. I learned that 150 people were signed up to attend and was faced with the real prospect of a "train wreck" that would be demoralizing and humiliating to all of us.

I had gone over the program a lot when Saturday rolled around. I made lots of notes in my book which allowed me to react as well as possible. We all wore flag ties and scarves I had picked up through Amazon and ebay. Close to 200 people showed up, so the place was packed! Thankfully, the direct feed made a big difference. While we got out of synch briefly a couple times, we went through the whole program. I really wanted to nail "Battle Hymn" (which we had never done in rehearsal) to end the program, and we did. The program was a huge success, with many people telling us that this was by far the best thing ever done in our community.

I know you are in the midst of preparing for another Christmas program. I am sure it will be a success as usual. Thanks again!

Blessings,

Kirk

Bill, JoAnne & Kirk after Veteran's Day program

In hindsight, I don't know what I was thinking when I took this on.  I was not at all sure my GEV chorus would want to do this, but when they got excited about it I decided to go for it (another blog article).  At some point during September I was starting to feel overwhelmed and knew that our chorus members might not understand my need to plan everything down to the letter and the mistakes I was making due to slowness and memory problems.  Some issues were coming up with the group, so I decided to "come clean" with them and shared the fact that I was having particular types of cognitive problems. From that point on it was clear, though nothing was said, that I had their compassion and support.  This redoubled my dedication to seeing this program through in spite of the difficulties.  The outcome and reaction from both the chorus and the community made it all worthwhile.  

In the process, I learned that I was still able to do some things, even though it was hard, that I would have thought beforehand exceeded my  "new" capabilities.  I also learned that it sometimes helps to share your problems with others.  Ironically, but not coincidentally (in my opinion) one of the songs in the program was Lean on Me, the lyrics of which say it all.  As a result, I intend to "raise the bar" for myself going forward (within reason) and continue to engage.

For me, faith is the most important piece of the puzzle.  This takes all the pressure off me because I know that my family and I are surrounded by God's grace and that we have nothing to fear.  This does not mean that I am absolved of all responsibility for making good choices.  I can honor Him by attempting to do this.  However, when I get anxious about what lies ahead, I stop and remind myself that He will take care of us no matter what happens.  What could be better than that?