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.