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!

Parkinson's Programs for the Artistically Inclined

Parkinson's Association of the Rockies (PAR) currently offers classes for dance (Rhythm and Grace), art (Artful Expressions-coming soon), and singing (Tremble Clefs).  They are also exploring the possibility of an additional  course for drawing/painting.  I have spoken in previous posts about the importance of "staying engaged with your passions".  These are wonderful opportunities for those who enjoy participating in the arts.

RHYTHM & GRACE

In Rhythm and Grace dance classes, participants explore  movement and music in ways that are enjoyable, stimulating and creative. Dance is appropriate for anyone with PD, no matter how advanced, although no dance experience is required. In chairs, at a barre or moving across the floor, you will explore elements of modern dance, ballet, tap, folk and social dancing in a non-pressured, social environment in which music energizes, enriches and empowers.

Dance for PD® is a unique collaboration between the Mark Morris Dance Group and the Brooklyn Parkinson Group. The program is built on one fundamental premise: professionally trained dancers are movement experts whose knowledge is useful to persons with PD. Dancers know all about stretching and strengthening muscles, and about balance and rhythm. Classes modeled after Dance for PD now occur in more than 40 communities in the US, Canada, Italy, India, Israel, UK and Germany.

Cost: $5/Class

Location : Dance Arts Studio, 555 Burbank Street, #N, Broomfield, CO 

Contact :             (303) 830-1839      , SLanzer@ParkinsonRockies.org

ARTFUL EXPRESSIONS

Launch party:
        Canvas and Cocktails

|   249 Clayton Street, Denver, CO 80206 6:00pm - Meet and Greet Artful Expressions Facilitator, Linda Larkin 6:30pm - Participate in a private painting party for $40

TREMBLE CLEFS

The Tremble Clefs program focuses on utilizing good breathing practice, louder voice volume and wider pitch range; thus addressing some of the most serious voice symptoms found in people with Parkinson’s. Participation in a Tremble Clefs singing program can help address common symptoms of PD through breathing, stretching and posture activities, vocal exercise and rhythm and movement. Research has shown that vocal exercise enhances voice volume in people with Parkinson’s, and that the presence of music and rhythm improves movement.  Singing can be both physically and emotionally invigorating. Please join us!

Location : Valmont Community Presbyterian Church: 3262 North 61st Street Boulder, CO 80301 or  Shalom Cares Wellness Center, 14800 East Belleview Drive, Aurora, CO 80015 
Contact :             (303) 830-1839      , SLanzer@ParkinsonRockies.org

For those of you who have read my post titled "Grampa Music", you already know that music has been one of my most significant passions since I was young.  I have had problems with breath support and volume as well as range and voice quality as the disease has progressed.  Singing is my voice therapy of choice.  I have been singing in my church choir and community chorus since moving to Highlands Ranch in 2009.  Over the last year or so, the voice changes have become problematic, especially during periods when I am not singing.  Once I get back into the swing of rehearsals, I am able to return to a respectable level.  I can make further improvements by doing the Lee Silverman Voice Therapy (LSVT) exercises I have learned (LSVT is the "gold standard" for voice therapy related to PD).

The national website for Tremble Clefs can be found at http://www.trembleclefs.com.    I have had the opportunity to meet some of the folks in Phoenix who are involved in a good example of what Tremble Clefs can accomplish.  An amazing video about their group, including their performance of the National Anthem at an Arizona Diamondbacks baseball game, can be seen at http://vimeo.com/44259112.

I am involved in conversations with PAR regarding Denver area singing programs and hope to play a role as the programs develop.

Making Memories

This is a continuation of the thoughts from "Living in the Moment", the idea being that there are some activities that can be an important part of the present as well as the future.

Linda and I spent last week in Florida at a wonderful family beach vacation spot called Anna Maria Island just west of Bradenton.  The occasion was the celebration of our older son's 40th (yikes!) birthday.  It seemed appropriate to return to Florida for this event since he was born in Gainesville, FL.  We rented two houses with pools to house our group of 24 (both sons, wives, six grandchildren, friends of the "birthday boy" and their families, and a couple assorted grandma's to help with the kids).  A wonderful white sandy beach was only a short walk away.  We were faced daily with some very difficult decisions, like should we go in the pool first or go to the beach where our 10 children (including the friend's kids) were alternately building sand castles or floating on the turquoise water of the gulf in groups.  There was a break for lunch around noon (nobody was wearing a watch), a few naps (including me), then either a return trip to the beach or an afternoon in one (or both) of our pools.  On Wednesday, we took a break for the guys to go deep-sea fishing (one of Kev's friends caught a 135 pound tarpon!) while some of the mom's and kids went on a dolphin-watching tour.

Linda & Carina on dolphin-watching tour

The last afternoon we all walked out to a sand bar at low tide and collected conch shells (most still had conchs in them-one housed a hermit crab) for quite a while before walking (some of us carrying little ones) back to shore.  That evening we gathered at the beach to watch the glorious sunset (Linda and I did this multiple times) and then created a sand memorial to our trip (AMI 2012 was written in seaweed on the beach) and assorted pictures of various groupings were taken.  Of course, we did this to remind us of the good times we had there.  Further in the future, some of the folks in the picture will no longer be around (at least not in the conventional sense).  I am sure our children and grandchildren will look at these pictures and smile.  I think we can all agree on that being a good thing.

Grandkids and friends at Amelia Island 

                                 

Sunset at the beach on Amelia Island

I have been particularly mindful of my "window of opportunity" to create special memories for my family for a few years now.  I wrote a memoir for my boys in 2009 to share memories of my childhood, meeting and falling in love with Linda, family vacations and more.  Whenever possible, we get together to celebrate birthdays and holidays.  Linda and I have taken trips to Phoenix, Costa Rica, Moab, Alaska, and now Florida.  We will be spending a week in Canmore (close to Banff) in September and are investigating possible destinations for either November of early next year.  We are determined to "make hay while the sun shines".

My hope for everyone, including PWP's and care partners, is that we will resolve to do the best we can to enjoy and appreciate each day whether we are taking a walk in our neighborhood or on a remote sandy beach.  Remember to set aside some time to plan special activities you enjoy with those you love and create memories that will last a lifetime and beyond.

PDF Learning Institute Invitation

Linda and I are honored that we have been invited by the Parkinson's Disease Foundation (PDF) to attend the Parkinson’s Advocates in Research Learning Institute – Western Region July 19-21 in CA.  We are excited that we will be able to share what we learn through this blog.  We also plan to continue doing advocacy presentations to PD support groups and other community organizations.   Hopefully, we will also have additional opportunities to spread the word through media interviews.  Here is a brief description of what we will be preparing for:


By participating in the Learning Institute, you will be joining a network of more than 156 PDF Research Advocates throughout the United States who are working to improve the process that leads to new Parkinson’s treatments. Research Advocates are asked to commit to volunteering a minimum of five hours per month on activities that can include working with researchers and study coordinators to address gaps in Parkinson’s research, reaching out to the Parkinson’s community about the importance study participation and participating in Parkinson’s Advocates in Research (PAIR) monthly conference calls. We believe the Learning Institute will provide you with the knowledge and skills necessary in helping to move Parkinson’s research forward.


We are more than happy to make this commitment and look forward to publishing a description of the experience when we return.

Shaky Paws Top 10 Recommendations for Care Partners

1.     Live in the moment

·    Learn from the past, plan for tomorrow, but live for today

·    Don’t put off those activities that you have talked about doing “some day”.

·    Make time for fun.

·    Kirk has written an article on this subject on his blog which can be accessed at http://www.blogger.com/blogger.g?blogID=4043496383382565799#editor/target=post;postID=5852441669583448568

       2.  Communicate

·    It is crucial to keep the lines of communication open.  Tell each other what you are thinking and feeling. 

·    Share the things you are worried about and problem solve together.  Express your love for each other frequently. 

·    Catch each other doing little things that provide an opportunity to express appreciation.

3.  Learn

·    Learn as much as you can about PD and related issues. 

·    Stay engaged by participating in support groups and seminars. 

·    Participate in clinical research trials with your partner in order to help yourselves as well as others. 

·    Understand and accept that PD is a moving target and that your partner’s evolving condition/needs as well as your own will require flexibility and adaptation.

4.   Advocate for your partner and yourself

·    Accompany your partner to all medical appointments in order to provide first-hand information about what your partner is experiencing as well as a “second set of ears”.

·    Since it is typical for your partner to have executive function problems, take notes regarding important details

·    Ask questions, voice thoughts/ideas and ask for clarification of anything that is unclear.

5.     Take care of yourself

·    Ask for help.  Solicit assistance as needed from family members and/or friends.

·    Make time for yourself.  Stay engaged with your passions.

·    Attend to your personal wellness.

6.     Faith

·    Our belief that we will be equipped to deal with whatever happens is extremely comforting to us.  Staying committed to that idea over time requires faith. 

·    Faith provides an opportunity to “let go” of fear about the future over which we have no control, and focus on the things we can control.

·    Read the same article listed under #1 if you haven’t already.

7.     Patience

·    PD mood swings and/or cognitive problems can be very hard on relationships.  No matter how good your communication, it is likely that your partner will sometimes act or react in ways that are “not tactful”.  Try very hard not to take these things personally. 

·    At a later time, communicate about what happened. 

·    Don’t let an individual episode create a rift between you. 

·    Talk with your Movement Disorder Specialist (MDS) about any ongoing concerns.

8.     Balance

·    Your “PD life” takes place in the context of your “overall” life.  It will be beneficial to both of you to keep the two integrated and balanced as much as possible.

·    As the disease evolves, your partner’s physical and mental abilities will change and may be influenced by depression, anxiety or apathy.

·    Based on your knowledge of your partner, you can experiment with different strategies to encourage exercise, keep them engaged mentally and socially, discourage driving and more.  Keep your MDS in the loop and ask for suggestions.

·    Care partner/PWP breakout sessions in support group meetings are a good opportunity to share concerns and get suggestions.

9.     Be prepared to make tough choices

·    Despite your best efforts, there may be a time when you are no longer able to cope with your partner at home by yourself.

·    Explore options (preferably with your partner) such as assisted living, residential facilities, or in-home care/services so that you can make an informed decision if and when the time comes.

·    Do not “suffer in silence” or feel compelled to “go down with the ship”.  Talk to your MDS, support group friends, and family members as necessary.

10.                   Perspective

·    Continue to find the joy in your lives and the love in your relationship.

·    Celebrate the small victories.

·    Be happy whenever possible.

·    Do NOT let PD own you!

“Mrs. Shaky Paws” is Linda Hall, retired social worker and wife/care partner of Kirk Hall (they will celebrate their 43^rd wedding anniversary this year), author of Carson And His Shaky Paws Grampa and patient perspective Parkinson’s advocate/speaker.  Initially reluctant to accept her husband’s diagnosis, Linda has become very knowledgeable regarding PD and is a very effective advocate for him.  She is an active participant with Kirk in Denver area support groups and the Parkinson Association of the Rockies.  Linda is engaged in an ongoing “balancing act” involving six grandchildren, her love of exercise and competitive tennis, involvement in the local PD community, and Kirk’s evolving needs and activities.  Articles related to the book, Kirk & Linda’s journey, and the challenges/blessings of life with PD can be found at shakypawsgrampa.blogspot.com.  For information on his book, which was written to facilitate communication between adults and children regarding serious illness, visit http://www.innovopublishing.com/Featured-Book-Shaky-Paws-Grampa.html.   

Shaky Paws Top 10 Recommendations for PWP's

     A list like this is meant to provide initial  “patient perspective” direction for the “new kids on the block” or an opportunity for more experienced PWP’s and care partners to compare and consider their priorities.  Not that my list is the “last word”, but it is based on a lot of research, support group meetings, a visit to the  National Institute of Health’sNational Institute of Neurological Disease & Stroke , participation in workshops at the  SE Parkinson’s Conference , and joint presentations with movement disorder specialists to support groups sponsored by the  ParkinsonAssociation of the Rockies , as well as my personal experience.  Talk to your  movement disorder specialist  (MDS) to establish a plan and priorities that are appropriate for your needs.

1.    Be sure your doctor is a movement disorder specialist/neurologist (MDS).  Even if your doctor is a neurologist, this does not mean that he/she has the experience or education with movement disorders that will enable them to provide the specific care you need.  Visit http://www.essentialtremor.org/siteresources/apps/physicians/ for a list of MDS’s in your state.  If your insurance company prevents you from seeing an MDS, let them know that this is a serious problem for you and seek a referral.  If you cannot obtain one, let your local support group leader know so they can report it to the regional PD organization for follow up.  If you have this type of insurance company problem or if there are no MDS locations in your area, locate a neurologist who has demonstrable experience working with PD.

2.    Exercise.  There are many things related to PD that are beyond your control.  Getting regular exercise is something you can control that can make a big difference in your symptoms and your quality of life.  Establish a plan with your MDS that is appropriate based on your age and condition. Visit http://davisphinneyfoundation.org/living-pd/ for helpful suggestions regarding exercise and living well.

3.    Participate in clinical research trials.   When you do this you accomplish two things.  First, you help with the advancement of knowledge that will lead to a cure.  Second, you learn things that may help you.  Information on specific studies including availability, location, and timing of research trials visit www.pdtrials.org/ or https://foxtrialfinder.michaeljfox.org/.

4.    Learn everything you can about PD.  This applies to both PWP’s and care partners.  By doing this, you will have a better idea of what to expect in terms of symptoms and progression.  Also, it will enable both of you to advocate for yourselves, ask informed questions, and become active/proactive in the management of your health.  For a list on online information resources, visit http://shakypawsgrampa.blogspot.com/2011/12/resource-list-donation-appeal.html.  Also try googling any combination of Parkinson’s and _________ (fill in the blank with any topic of interest such as fatigue, non-motor symptoms, or cognition).  Choose relatively current articles by recognizable organizations for the most reliable information.

5.    Prepare for your MDS appointments.  Remember that these are very busy individuals who want to provide you with the best care possible.  Help make the limited time you have together in appointments productive by preparing a list that includes:

·    Your current list of prescriptions including dose size and times/day you take that dose.

·    Your current list of supplements including dose size and times/day you take that dose.

·    List of current symptoms in order of how troublesome they are to you.  Use bold type to identify the most troublesome symptoms.

·    A list of observations/information regarding your condition or any changes that you want your MDS to know about.  Record on/off fluctuations, episodes of dyskinesia, and whether they occur at the peak or end of the medication cycle.

·    A list of questions regarding your condition, symptoms, treatment, medications, alternative therapies, or new developments you have heard about that may apply to you.  It is extremely important that you and your care partner give this careful thought in advance.  By organizing for your appointment this way, there should be adequate time to have all you questions answered.

If your care partner is unavailable to attend the appointment, then choose a friend or relative to accompany you.  It’s important to have two sets of eyes and ears and someone to take notes.

6.    If you are not comfortable with your MDS for any reason, talk to him/her about it.  If you don’t understand your treatment plan, can’t get answers to your questions, can’t obtain needed referrals, are unable to communicate with him/her between appointments in a reasonable manner, or anything else, talk about it.  Be a polite squeaky wheel.  If you are unable to resolve problems that are important to you, find another MDS!  Your #1 obligation is to yourself and your care partner.

7.    Attempt to “live in the moment” as much as possible.  Learn from the past and move on.  Plan for the future, but do not dwell on the uncertainty that it surely contains.  I know that this is easier said than done.  In my case, I rely on my faith for reassurance and guidance.

8.    Set meaningful goals and work to accomplish them.  If this has always been your approach, continue it.  If it has not, resolve to start.  There is no shortage of opportunities, as we all know.  Choose from things like reaching out to help others, treating your care partner with patience and respect, maintaining wellness, getting exercise (physical and mental), writing a memoir, attending seminars, participating in clinical research studies, participating in PD fundraisers, attending support group meetings, attending church or otherwise engaging your faith, and many more.  Make your goals as specific as possible and make sure you are prepared and able to do what is required to accomplish them.  Hold yourself accountable and ask your care partner to do the same.

9.    Stay in touch with your passions.  Some of the non-motor problems associated with PD can include depression, anxiety, and apathy.  You may be able to reduce these kinds of issues by engaging in activities that have been important to you in the past.  If they involve physical or mental challenges you are no longer up to, try modified versions or seek new activities related to your passion (such as listening to music or attending concerts if you are no longer able to sing or play an instrument).  Resolve to stay engaged with family and friends.  It is OK to give yourself permission to have a “down day” once in a while, but don’t stay there.

10 Continue to seek and live your “personal truth” without trying to force it on others.  I picked up this terminology in a book titled  Wisdom of the Ages  by Wayne Dyer and have found it to be helpful.  What do you believe in and what matters most to you?  Do your actions reflect your beliefs and priorities?  Talk about these things with your care partner and discuss any changes you might want to make as part of a plan for the future.

Shaky Paws On YouTube

My publisher has posted a new video trailer for Carson & His Shaky Paws Grampa on YouTube at http://youtu.be/kJuPbbr2-DE.


 

They have also posted the interview done by Fox TV in Phoenix at http://youtu.be/bv9MJdGak7Y.