An Underaddressed Problem

I received an email from the Michael J. Fox Foundation on June 17, 2013 that addresses cognitive dysfunction, a problem that impacts many PWP's and, consequently, their families.  A couple from the Denver area who are board members for the Parkinson Association of the Rockies, Barbara and Lee Mendel, are featured in the email.  Linda and I recently had an opportunity to meet this wonderful couple.

I was interested to hear their story and learn more about their experience with Lee's cognitive dysfunction.  It was very helpful for me when I was first diagnosed with PD five years ago to sit down with a couple (May and Joe Hertel) who were willing to share their experience with me.  Now, as I sense my own experience which may end up leading to Lewy body dementia (LBD), I was like a sponge soaking up everything these kind folks had to share with Linda and me.  It seems that we established a friendship that day which will be important to us for years to come.

Barbara highly recommended that we read A Caregivers Guide to Lewy Body Dementia.  I ordered the book on Amazon and downloaded it to my Kindle.  Between our conversation with the Mendels and this book, I learned a great deal that was helpful to me.  While I would rather not have LBD, I am at peace with it.  In an odd way, all this has opened doors for me for which I am grateful.  I am hopeful that Linda will also find it to be helpful in the future.

Linda and I will be going to the World Parkinson Conference in Montreal (October 1-4, 2013) so that I can participate in the PDF (Parkinson Disease Foundation) PSG (Parkinson Study Group) program annual meeting just prior to the start of the WPC.  I had been invited by PDF to be part of the neurosurgery working group (an honor I would otherwise have accepted), but another group caught my attention. I managed to wrangle my way into the cognitive/psychiatric working group meetings, which are highly interesting to me.  I am hoping that I will be able to provide a "patient perspective" that will be helpful, as well as some specific ideas for research.

2013 Parkinson Vitality Walk

Welcome to the Donation Page of

Kirk Hall

Join me in my efforts to support the Parkinson Assocation of the Rockies on June 2 in Washington Park!

I am letting others know that Parkinson's affects an estimated 17,000 individuals in Colorado alone. I am telling others that Parkinson's is one of the most common neurological diseases; second only to Alzheimer's. My support in this event will bring more awareness of this neurological disorder to the community.  I will be a member of Team Frankenberry and walking in memory of our friend, Ken Berry.

I would deeply appreciate if you would join me in taking an important step – support the Parkinson Association’s Vitality Walk today!

(FYI: No amount is too small, and whatever you give will be greatly appreciated. 100% of all contributions made will benefit the Parkinson Associations' programs and services Coloradoans with this disease count on to live enriched lives.)

In My Opinion

I spent some time a few days ago on facebook checking out notifications from friends and family members.  I have been thinking about some of things I read and would like to share my thoughts, for what they are worth.

One in particular stated something about being disappointed with something related to government that defied common sense and went further to state something like she would like to expect more, but didn't.  I don't remember where I read this and it doesn't matter. I read and hear stuff like this all the time, sometimes coming from my own mouth.

Perhaps we should consider spending a little less time staying in touch with what "the herd is thinking and doing" and spend more time thinking and doing ourselves.

A story I read many years ago comes to mind.  I am sure many of you have read (or seen the movie) Watership Down.  In this book a group of intrepid rabbits flee there warren when it is destroyed by bulldozers in search of a new home.  They have many adventures as they make their way across fields, streams, hills and valleys in the bucolic English countryside.

In one chapter, they come upon a warren occupied by a rather subdued, passive collection of rabbits.  Here is a synopsis of the chapter:

"The company cope with many dangers, but none so insidious as their encounter with Cowslip's Warren. Here, the company encounter an apparently prosperous rabbit colony with pampered and fastidious citizens who enjoy plenty of food and protection from predators by humans. However, Fiver is profoundly suspicious especially when he observes the local culture disdains the traditional tales of El-ahrairah in favor of maudlin fatalistic poetry. When Fiver attempts to leave, a derisive Bigwig learns firsthand the deadly secret of the warren; the whole area is a human designed rabbit farm with numerous snares placed to harvest them. After helping Bigwig escape, Fiver convinces his fellows to leave this decadent colony immediately and afterward his counsel is followed without question."

The point I would like to make is that I think the collective "we" used to expect more.  In fact, our fathers, mothers, and ancestors fought so that we would be able to expect, and demand, if necessary, a "non-partisan" more (this has nothing to do with party affiliation).

My concern is based on another "insidious" situation that we are experiencing in our world today, in my opinion.  I see a real danger that we, like the passive rabbits in the book, may be crossing a dangerous line when it comes to "entitlements".  Is it possible that we might, consciously or subconsciously, become so used to being "provided for" that we become complacent about our desire to "provide for ourselves" or even elect individuals based on a desire to "hang on" to our entitlements?  Has anyone read "Who Moved My Cheese?"

I hold myself accountable in this regard.  I was diagnosed with PD five years ago.  During the time when I was unable to work due to symptoms including tremor, debilitating fatigue, and cognitive problems, I first received unemployment benefits and then SSDI (social security disability insurance).  I was  fortunate and appreciated that we had a system that provided needed support. 

I have since taken steps to try to take ownership of my situation and had some success as an author and PD/clinical research advocate.  I am not saying that what I have done is anything anyone should aspire to, but I am glad that I was able to do these things.  Sometimes, "giving back" can take other forms besides financial repayment.

The term "balance" also comes to mind.  Once again, in my opinion, balance is desirable in all things.  In this case, it is the balance between providing needed support and fiscal responsibility.  Both are needed, but we are currently severely out of balance.  Beware those that are proponents of either without regard for the other.  

Once more, in my opinion, each person has a responsibility to him/herself as well as the collective "we" to have a clear set of values and ethics that will help them navigate difficult times and decisions.  I have found Wayne Dyer's "Wisdom of the Ages" to be very helpful in this regard.  It helped me realize the importance of taking ownership for developing and applying my "personal truth".  This requires a willingness to "not follow the herd" as we are prone to do.

Focused Ultrasound Technology: An important development

I have received emails recently from my network alerting me to an important new development called Focused Ultrasound Technology that is destined to dramatically change the way surgeries are done, medications and therapies are delivered, and more.  Here is an overview from the Focused Ultrasound Foundation website:

How It Works

Focused ultrasound is a platform technology with a variety of biological effects in tissue that enable treatment of a wide range of clinical conditions. As represented in Figure 1 below, a specific bioeffect may enable treatment of multiple conditions; similarly, a specific condition may benefit from multiple different bioeffects. When assessing focused ultrasound to address a given clinical need, it is important to evaluate the role of many bioeffects, including the synergism between multiple bioeffects, to best optimize the treatment.
The bioeffects produced by focused ultrasound are highly localized in a small region of tissue corresponding to the focal size of the ultrasound beam. The focal size for current focused ultrasound systems in clinical use range from 4 to 60 mm in length and 2 to 16 mm in diameter; focal spots – sonications – are typically cylindrical or ellipsoidal in shape.

These localized bioeffects are produced by either thermal or mechanical mechanisms of ultrasound interaction with the targeted tissue. These thermal and mechanical effects and their biological outcomes – bioeffects – are determined by the type of tissue (muscle vs. bone, for example) and the acoustic parameters (power, transmission duration, and mode – continuous vs. pulsed).
To find out more, click on each title below for information about the various effects that focused ultrasound can have on tissues:
Thermal Effects
Mechanical Effects
Biological Effects

The areas of medicine where this technology is currently being tested includes neurological, oncological, musculoskeletal, cardiovascular and more.  A chart on the website shows where development stands for each clinical application in these categories.

For anyone interested in more detailed information, here are links from the Focused Ultrasound Foundation on the subject:


The direct download link is: http://www.sendspace.com/pro/dl/ksj4k8
The download page link is: http://www.sendspace.com/pro/ksj4k8

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.