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?

Clinical Research Trials: A Critical Opportunity For All PWP's

Unless you are really new to the world of Parkinson's disease (PD), you have heard about the importance of participation by PWP's (and care partners, for that matter) in clinical research trials.  There are other opportunities to make a difference, including participation in fund raisers, support groups, serving on committees, public speaking, and more, but there is nothing we can do that has more potential to help others with PD as well as ourselves than participation in research studies.  By the way, care partners can sign up for many studies to be part of the "control group".

I have participated in quite a few of these myself, both locally and nationally.  I can assure you that by investigating these studies, you are not automatically committing yourself to participation.  You will have more than ample opportunity to decide if a particular study is a good choice for you.  Here are the steps to follow:

1. Use any of a number of "trial finder" sites (which I will list in this article).
2. Complete the profile information that identifies the type of trial that interests you, such as your location, date of birth, gender,  and medical history highlights.  You may want to choose trial topics that have personal relevance to you or someone you know.
3. Search for trials of interest for which you qualify.  Many sites will allow you to register for an automated search  that will provide a list of studies that match your profile (a good place to start).  Every trial has parameters for inclusion/exclusion as well as a description regarding the goals of the research.  Also, some trials are actively searching for recruits while others are in progress and not currently recruiting.  Set parameters that will narrow your search so you don't spend a lot of time "spinning your wheels". 
4. Identify a "short list" of studies that interest you and make a list of generic questions you want to ask.
5.  Call or email the contact person listed in the study information.  If you are a good "fit" for the program, ask your generic questions as well as those you may have specific to that study.  You will be told what to do from that point if you decide to proceed.

Trial finder websites (click on each for a direct link):

• Fox Trial Finder
• PDtrials
• National Institutes of Health (NIH) (comprehensive registry of federally and privately supported clinical trials conducted in the United States and around the world) 
• NIH Clinical Research Trials and You (online resource to help people learn more about clinical trials, why they matter and how to participate)

For all our sakes, please do this today!  You CAN make a difference!

Kirk & Linda Hall are Parkinson Disease Foundation (PDF) Research Advocates.  To learn about this important program including how you can get involved, visit http://www.pdf.org/pair.

Driving and Parkinson's: Balancing Independence With Safety

I read this article in the PDF quarterly newsletter and wanted to share it as this is a subject of great interest to PWP's and care partners.  It seems to me that it is common for PWP's to continue driving when it is no longer safe.  Care partners often lament that this causes them a great deal of concern for the safety of their loved one as well as others.  Add to this the potential for catastrophic legal and financial ramifications if there is an accident.  This article provides useful information to consider when making the decision regarding when is the right time to "hang up your keys".  SPG

By Margaret O’Connor, Ph.D., A.B.P.P., and Lissa Robins Kapust, L.I.C.S.W.

The ability to drive a car is a powerful symbol of independence that is closely tied to self-esteem and self-efficacy. Many people with Parkinson’s disease (PD) continue to drive safely long after their diagnosis.

While the symptoms of Parkinson’s and the side effects of its medications may affect a person’s driving ability, the diagnosis alone does not tell the whole story. Much depends on a person’s specific symptoms, as well as the presence of other changes that may come with aging. So how can people with Parkinson’s and their loved ones be confident that they are safe on the road?

Driving and PD

Driving is a complex task. It requires visuospatial processing (the ability to gauge the distances between objects in the environment); physical strength; agility; good reaction times and reflexes; and intact eyesight and hearing. It also requires the ability to keep track of several things simultaneously, including the speed of your car, the presence of other cars and objects in a rapidly moving environment, and the interior mechanisms of the car. Most people who have a lifetime of driving experience behind them have honed these skills over the years, and are able to automatically integrate the complicated tasks that are needed for driving. However, the aging process affects driving skills, and these may become further compromised in the context of Parkinson’s.

And there are specific Parkinson’s-related symptoms that may affect driving. These include:

• Bradykinesia, or slowness of movement. This is important because driving often requires quick reaction time.
• Cognitive changes. Although PD is a movement disorder, its cognitive aspects — chiefly, executive function (the ability to manage multiple tasks) and impaired visuospatial processing — have the most important impact on driving. People with PD may have difficulty multitasking — for example, driving while listening to the radio. Impaired visuospatial processing can result in veering towards the side of a lane, impaired ability to park, misjudging turns, clipping side view mirrors, and misjudging the speed of other vehicles. Visuospatial impairment is a key reason that passengers become concerned about a driver’s abilities. Lastly, memory difficulties may make it hard for people with PD to focus —particularly when they are driving in unfamiliar places.
• Vision changes. People with PD may have trouble with contrast sensitivity, which means visually differentiating objects from their backgrounds. In addition, with PD, it may be difficult to visually scan the environment quickly enough to anticipate and react to a change — for example, having to suddenly step on the brakes if a car ahead of you quickly changes lanes.
• Drowsiness. The side effects of medications, or sleep difficulties, can cause a person to become suddenly and unpredictably tired or sleepy. We know from research that sleepy drivers can be dangerous drivers. Movement symptoms. Tremors and dyskinesias (abnormal, involuntary movements) may make it difficult for people with PD to get into the car, or to control it.

Are You a Safe Driver?

Everyone, not only people with PD, should be concerned about being a safe driver. One way to find out how you are driving is to ask a trusted person to observe you at the wheel. Then review your own driving record. Have you had any crashes or near misses in the last year? Are other drivers honking their horns because your driving is slow or unpredictable?

If you are having difficulty driving due to PD, first talk to your doctor. You may want to undergo a formal driving assessment (tips below), which you can usually find through a hospital’s outpatient occupational therapy department. You can also look for a driving remediation instructor affiliated with a hospital. Note: health insurance does not typically cover a driving assessment.

Testing Driving Skills

If you do choose to undergo a driving assessment, there are several tests that may be administered in an office setting. These tests often focus on visual abilities, capacity for multi-tasking, speed of response, ability to maintain focused attention and mental flexibility. Visual and motor reaction times are measured with computer tasks and physical activities, such as pressing down on a mock brake pedal when a red light comes on.

A more common option is to take a road test, with an instructor in the front seat and sometimes an occupational therapist in the back. The road test will include driving on large and small roads, making turns, stopping at signs and exercising skills such as maintaining a steady speed and staying in the correct lane.

Making sure that a person is a safe driver does not end with passing the test. It also requires following a set of practices in real world driving. These may include planning routes ahead of time; installing an adaptive steering device (if needed); restricting driving to the “on” periods of the PD cycle when medications are working optimally; driving with a co-pilot; and staying off the roads at rush hour or after dark. People with Parkinson’s should also make it a habit to scan the road far ahead, to anticipate problems and to plan responses.

Sometimes, the result of a driving assessment is not a clear “pass” or “fail.” If this happens, a person can generally work on their skills and take the test again.

When to Give up Driving and Who Decides?

Learning to drive is a rite of passage. Though less recognized, the decision to stop driving is also a rite of passage — it can change quality of life, increase the burden on care partners, and lead to depression and social isolation. It may also motivate individuals to move to a setting that offers alternative forms of transportation.

Plus, the decision as to whether or not to give up driving is much less well-defined than that of getting a license. The “older driver” is defined differently from state to state and each Department of Motor Vehicles varies in terms of how it handles license renewal for older drivers. Most people do not want the privilege of driving to be taken away from them. And no one wants to be the “bad guy” who tells a person that he or she is not driving safely. But if there are concerns, it is important to start these conversations early.

Signing up for a driving assessment can help a person make a decision about whether to give up the car keys while avoiding the tension that comes from involving loved ones. It is important to note that the decision to stop driving can evolve over time rather than being made suddenly. Undergoing an assessment does not always mean getting a flat “yes” or “no.” It may be possible to continue to drive by setting limits, like driving less on highways, and not at all on days when a person is not feeling well. If and when you or a loved one does make the decision to stop driving, there are often programs available to help you get to where you need to go.

Conclusions

For many people with PD, driving is the most practical way to do errands, meet friends and get to work and appointments. Driving less, or deciding to stop driving altogether, are important life changes. The biggest challenge is finding the right balance: you do not want to deny yourself the privilege of driving sooner than is necessary but you certainly do not want your driving to put yourself or others in harm’s way. All of these decisions can be less stressful if you plan ahead.

Dr. O’Connor and Ms. Kapust serve on the faculty of Harvard Medical School and Beth Israel Deaconess Medical Center, Boston, MA. They originally presented this topic as a PD ExpertBriefing. To view it,
visit, www.pdf.org/parkinson_briefing_driving

This article was originally published in the Fall 2012 edition of the Parkinson's Disease Foundation (PDF) quarterly newsletter, News & Review. It is reprinted, in its entirety, with permission from PDF. For other publications, please visit www.pdf.org.

The Elephant in the Room: My Story

I was in a business meeting in early 2008 in Colorado Springs.  I was Marketing Director for and an agency that provided marketing and advertising consulting for organizations all over the U.S.  I had served previously in the same position for two Christian publishing companies since moving to Colorado with my wife to seek "quality of life" in 1994.  We had purchased a log home surrounded by ponderosa pines with a wonderful view of Pike's Peak and were enjoying our new "mountain lifestyle" including proximity to our two adult boys and their families in the Denver area.  This was a welcome respite from our hectic life in New Jersey where our boys did most of their growing up and I commuted into Manhattan for eleven years.  I had held positions at Federated Merchandising Services (a division of Federated Department Stores) as a corporate merchandise manager and American Express where I was a vice president for their direct mail catalog business.  My office at Amex was in the World Financial Center directly across from WTC1 (tower 1 of the World Trade Center).  I did a fair amount of traveling in those days, but when I was home I frequently had lunches, took friends up to the roof to enjoy the view, or took the PATH train into or out of one of the sub-levels of WTC1.  I was at Amex the day of the first attempt by terrorists to bring down WTC1 in 1993.  This horrific preamble to 9/11 was one of the key factors influencing our decision to move.

So this meeting was not all that different from hundreds I had attended (or led) in my 38-year career (including two years off to earn an MBA).  However, the circumstances were different in that I had been diagnosed with Parkinson's disease (PD) a month or so earlier. I had made an appointment with a movement disorder neurologist at the University of Colorado Hospital (UCH for an evaluation of my essential tremor (ET) condition (a troublesome, but by comparison, fairly benign condition involving "action tremor"), which was the only thing to which I could attribute the intense fatigue and disproportionate reaction to stress I had been experiencing.  Much to my surprise, I was told that I now was dealing with early stage PD in addition to ET.

During the course of this meeting, I started having trouble "processing" the things I was hearing and became literally unable to participate.  At this point, I did not really know what to expect with regard to PD symptoms, other than that "everyone is different" in terms of their reactions to the disease.  Like most others, I spent only a few minutes with my doctor following my diagnosis and was basically on my own until my next appointment in three months.  I decided that I would learn as much as I could through books, other patients, doctors, and the internet about PD hoping that this would help me to better understand the changes I was experiencing.  In the coming weeks and months I would learn a great deal that was enlightening and helpful, but found very little pertaining to cognitive issues.

The problems with processing and storage of verbal information continued.  It seemed that I would do OK for a while and then gradually just "shut down".  This would have been distressing in any case, but was even harder to accept based on the level of experience I had managing high levels of responsibility.  One day I was working at my desk and was answering the phone while others were at lunch.  I was working on my computer and taking a variety of messages at the same time.  I must have reached that "overload" point again because I looked for a message I had written for one of my co-workers so that I could leave it in his office for him.  I checked all over my desk, on the floor, in the wastebasket and couldn't find it anywhere.  Finally, I decided to check in his office, though I had no recollection of taking it there (around the corner and down the hall).  I opened his door and there it was on his desk.  

Other memory events ensued in the coming months leading my UCH doctor to refer me for a neuropsychological exam (which is designed to provide a "snapshot" of regarding all brain functions) at the end of 2008.  To make a long story less long, I received a fedex envelope today with the results of my third "neuropsych" exam.  While most of my functioning is normal or better (in some cases much better), the neuropsychologist reported that the results continue to be consistent with a condition called amnestic mild cognitive impairment (aMCI).  For those unfamiliar with this term, it sounds fairly benign.  However, for PD patients, it is frequently the last stop on the train before dementia (for more information, see my post on Parkinson's & Dementia).

Obviously, the potential for onset of PD-related dementia is my "elephant in the room".  This may explain some of my other posts, including Living in the Moment.  I am doing my best, but I defy anyone to ignore the possibility that they will lose their ability to communicate with or even recognize those they love most.  I have been using the only FDA approved medication for early to mid-stage PD dementia, Exelon (in patch form), for about a year.  I have found that it helps improve memory and clarity, sometimes more than others.

I intend to share more thoughts and insights regarding my situation as it evolves in future posts in hopes that they will be interesting and informative to PWP's, care partners, families, and the medical community.

Go For It

What have you always wanted to do?  Take a boat ride down the Amazon and swim with the piranhas?  Hang glide over the Grand Canyon?  Ski Denali from the top blindfolded?  If so, you are in need of psychiatric counseling.  But seriously, are you a singer who has never been able to work up the courage to do a solo?  Would you like to go on a safari in Africa?  Have you always wished you had climbed a mountain?  Would you like to try curling?  Or would you like to swing on a star, take a moonbeam home in a jar........ (you know the rest)?

Perhaps there is a long-lost friend that you have meant to re-connect with.  Or a friend or relative you haven't spoken to in years due to an argument.  Or a letter you have meant to write.  Why not stop thinking about it and go for it!  Those things we put off until tomorrow often don't happen at all.  

Those who have PD (or who are care partners) know that the future with this disease can be difficult to predict.  Since it is a progressive disease, by the time you get around to doing something, it may be too late.  It is a given that our ability to engage in various types of activities will diminish over time.

Linda and I are taking every opportunity we have to have fun.  We decided not to take our time together when I am able to do these things for granted.  This probably started last year when we visited Costa Rica shortly before my DBS surgery.  We had talked about going there for a couple years, but had never "pulled the trigger".  When old friends told us they were renting house by the sea shore and asked if we would like to join them for a week, we jumped at the chance.  While there, they expressed an interest in zip-lining and asked if I would like to join them.  Since I have no love for heights, you would normally find me running in the opposite direction at this suggestion.  Much to my surprise, after thinking about it, I decided to do it.  Once we got "harnessed up" and arrived at the first platform at the top of the mountain, I decided that I better be the first in line so that I wouldn't have time to talk myself out of it.  Everything was going swimmingly and I was enjoying the scenery flashing by me until I heard voices coming from the arrival platform exhorting me to SLOW DOWN!!  I had neglected to apply the hand brake (the padded glove on my right hand) with enough force and arrived at the platform not quite at warp speed but way too fast.  The rest is a blur, but the guys doing the "receiving" were well trained for just such a development and somehow looped a rope around my legs to stop me.  I went on to the next platform undeterred and from that point on I had a marvelous experience.  I think there were eleven lines and I handled them all like a seasoned pro.  One of them was 1/4 of a mile long and provided a breath-taking view of a forested valley as well as a ludicrous level of speed (which, at that point, I welcomed).  Linda was surprised (she had already made plans on how she was going to spend my life insurance payout) that I had not only survived, but had a great time.

Costa Rica Zip Line Tour

This year we traveled to Phoenix twice (once to speak to the Muhammad Ali PD Center support groups), the second time stopping at Moab on the way home to help man rest stations for a multi-day long-distance cycling fundraiser through Canyonlands and Arches National Park.  We had  booked a 10-day land/sea tour to Alaska for mid-May (before the "national bird" of Alaska was out in force-the mosquito).  Legend has it that there are mosquitos the size of eagles that work in packs to cull the weak tourists (the ones with cameras or binoculars handing from their neck) from the herd before descending on them with fangs dripping.  But seriously, there were only a few of the blood-thirsty (and unusually large) critters out at that time.  We were lucky to have a clear view of Mt. Denali/McKinley, enjoyed at day at Denali National Park and subsequent train ride to a port south of Anchorage to board ship.  Seven days later, after stops at Glacier Bay, Skagway (of Jack London/gold rush fame), Juneau, and Ketchikan, we debarked at Vancouver.  It was a great trip, but I really miss being able to bark (woof!).

Mt. Denali/McKinley

We leave this Wednesday for an (almost) two week car trip with my sister and brother-in-law that will take us to Grand Teton and Yellowstone National parks on the way to Canmore, Alberta (where we booked a time-share exchange for a week).  This is a town just south of Banff.  For those who have not visited the Canadian Rockies, it would be a worthy addition to anyone's bucket list, especially the stretch from Banff through Lake Louise and up to Jasper.  On the way home, we will stop at Glacier National Park.

Lake Louise

Glacier National Park

We have a trip planned for the end of October back to Linda's home town of Buffalo, NY. She grew up in a suburb called Amherst, and we lived there while I was going to grad school at SUNY.  The smarter members of her family are no longer there (just kidding).  We enjoy visiting with her aunt, cousins and families and catching up.  We always visit Niagara Falls, go by (you never go TO a place in Buffalo, you go BY it-I don't make the rules I just report them) the house she grew up in as well as the one we lived in, visit her old high school, etc.  But the REAL reason we go to Buffalo is the food.  Bocce Pizza, Ted's Hot Dogs, Duff's wings, "beef on weck" (kummelweck rolls-part of the strong German heritage of Buffalo), fish fries.......the list goes on.  Weight watchers, here we come!

Niagara Falls

Since neither of our kids (and therefore, none of our six grandkids) will be home at Thanksgiving, we booked another timeshare-related place in Scottsdale.  This will the first time in many years we have been away from home at Thanksgiving, but we intend to enjoy it.  We have been to that area a number of times over the years and enjoyed the sunshine, swimming pools, golf courses, and restaurants.  I may a turkey burrito with pumpkin salsa and chips and a cranberry margarita!

Cranberry Margarita

This is not a trip, but we will be home for Christmas with the whole family, including our younger son, Brian, and his family.  They will be returning home from Shanghai (China) where Bri and his wife, Sybil, are teaching for (at least) two years at the Shanghai American School.  The pain of their being so far away is lessened (somewhat) by our 

weekly skype sessions and the knowledge that all of them, including two of our 
grandchildren, are having the experience of a lifetime.

Shanghai American School

The last trip on our docket occurred spontaneously.  I generally try to avoid spontaneity until I have had a chance to think it over.  In this case, I did not have that luxury.  Linda and I were at a golf tournament fundraiser dinner for our church a couple weeks ago.  My team had finished in fourth place for the third year in a row (the top three finishers get prizes) so I was understandably despondent until I heard an announcement that there was a silent auction for a condo in Maui for a week.  Perhaps this is when my zip-line experience paid off as I threw caution to the wind.  For those of you who have never participated in a silent auction, you put your name on a list with a bid for the prize.  Not wanting to seem over-anxious, I strolled in the direction of the table so as not to draw attention.  I checked out the offer as well as I could since I was not wearing my reading glasses (not to mention that I had already had a couple glasses of wine).  Impulsively, I put my name on the list (I was the first one to bid!) with the minimum allowable offer.  My thinking was that, since I was the first name, someone else was sure to offer $5 more and I would lose (that's the way the day had gone so far anyway).  However, I decided to play out the charade and sauntered casually back to our table, where Linda was sitting with friends of ours from Sweden who now live in Colorado Springs.  I should mention that Linda had no idea that I was doing this and I began to worry about the trouble I would be in if, by some miracle, my bid won.  A short time later they began to announce the winners for the golf tournament (hit me again bartender!) and other prizes.  The last announcement was the winner of the silent auction.  I was shocked to hear my name announced!  As it turns out, no one else had even put in a bid!  As I started low-crawling for the nearest exit, I heard Linda shout excitedly, "We're going to Maui!".  When we went up to get the details, it turned out that it actually was a very good deal in a very desirable location!  Not only that, the condo would house four people, and our Swedish friends casually mentioned that they had NEVER been to Hawaii.  We invited them and they accepted on the spot.  We have already booked our flights for a week in March and are looking forward to it.

Maui Beach

In closing, I hope this story inspires you to man up, woman up, suck it up, or whatever you need to do to make it happen (whatever it is) and take the opportunity to create your own happy endings!