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.