The Parkinson Alliance Blog

Cognition & Parkinson’s Disease: The Patient’s Perspective

October 18th, 2016

cognition

Cognition is a broad term that encompasses everything from general knowledge and memory to problem solving, decision making, and comprehension. But how does Parkinson’s affect one’s cognition?  The Parkinson Alliance, through its latest survey, answers that question from the patient’s perspective. Over 1,500 people with Parkinson’s participated in the survey, including nearly 400 who had DBS surgery. The survey report provides a better understanding of this complex topic, and offers recommendations pertaining to cognitive functioning in individuals with PD. You can read the complete report here.

One area that participants noted cognitive changes was in memory and how the duration of their disease and age affected perceived memory.  In fact, there are “normal” types of memory problems that happen to all people, regardless if they have PD or not.

Harvard Medical School has a fascinating article entitled, “Improving Memory: Understanding age-related memory loss” in their Patient Education Center. In part, it addresses some memory issues that are normal.  These include transience, or the tendency to forget facts or events over time; absentmindedness; blocking, such as something being on the tip of your tongue; misattribution, such as when you have the right memory but the wrong source (e.g., we saw that movie on Tuesday, when it was Wednesday); suggestibility, which relates to the vulnerability of your memory to the power of suggestion; bias; and persistence, meaning those memories that one cannot forget like those someone with PTSD may experience.  Most fascinating was the lengthy section on why memory fades and what you can do to help keep your brain healthy.  These recommendations, for example, include getting a good night’s sleep, staying socially active, continuing to learn, and managing your stress, among other things.

People with PD, however, do tend to have more problems with working memory (such as not remembering where keys are placed) and retrieval (such as not remembering an appointment).  The University of California, San Francisco, offers an educational video entitled, “Coping with the Cognitive and Behavioral Symptoms of Parkinson’s Disease” on their Parkinson’s Disease Clinic and Research Center website.  The video was presented by Dr. Katherine Possin at a conference on PD.  The good news is that these types of memory problems can be helped with different copying strategies, which she details.  For example, some strategies include writing things down, using a calendar, using an electronic reminder, and setting up a daily routine, among other things.

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Examples of memory strategies

Also of note in our survey report is that the vast majority of participants indicated they had not been prescribed medications for cognition difficulties.  However, many of those who have been prescribed medications reported a perceived benefit.  But, non-medication based therapies are also useful in improving cognition as are physical exercise, reading, social relationships, learning a second language, listening to music, interacting with pets (such as service dogs), and learning to play an instrument.

If you are newly diagnosed, I recommend that you request a neuropsychological evaluation test to obtain a baseline of your cognition.  Also be sure to monitor and treat sensory changes, for example your vision and hearing.

Read Cognition & Parkinson’s Disease: The Patient’s Perspective. Please let us hear from you on this topic.

Margaret Tuchman and her blogging partner Gloria Hansen

Lori Campbell, winner for animation at 2016 World Parkinson Congress

October 5th, 2016

Congratulations to Lori Campbell who was crowned winner of the 2016 World Parkinson Congress Video Competition with her stop-motion animation called “Victory.”  We just love this video.  Enjoy!

Margaret Tuchman and her blogging partner Gloria Hansen

Neurodegenerative Diseases, the Need for Research Dollars, and The Resilience Project

August 2nd, 2016

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iBiology has an eye-opening video that we invite you to watch called, Neurodegenerative disease: The Coming Epidemic.  In it, Dr. Gregory Petsko discusses how our population is aging and how with that comes an increase in neurodegenerative diseases, such as Parkinson’s. He makes a clear case for the need for research dollars.  He also explains that while most neurodegenerative diseases “arises sporadically, about 10% has a direct genetic cause.”  It is the genetic cause and how researchers are studying it that is incredibly exciting.

He introduces us to Douglas Whitney of Port Orchard, Washington whom he calls “the most interesting man in the world.”  He tells us that about half of the Whitney family has died in their 40s or 50s because of a genetic mutation that causes Alzheimer’s disease.  Mr. Whitney has the mutated gene.  By all accounts, he too should have died from Alzheimer’s.  However, at age 67 he is still alive and shows no signs of the disease.  The question is why.  What can researchers learn from what else Doug Whitney may have in his genetic make-up?  You can watch the video below and find additional information, including more videos in the series and related articles, here .

After watching the video, you may find yourself wondering how many other Douglas Whitneys may be among us.  In April 2016, The New York Times reported in an article entitled, People Who Avoided Illness Could Be Key in Treating Those Who Didn’t that “researchers searched databases containing genetic sequences from nearly 600,000 healthy adults” and discovered 13 who may hold clues “to treating others who did not escape the gene’s effects.” The excitement of those 13 was very short lived because while the participants in the databases gave their DNA, they also signed an agreement that they would remain anonymous.  In short, it was back to square one.

This, however, sparked the idea for The Resilience Project which “aims to discover hidden factors that protect people from disease.” The Project is searching for people worldwide who, “according to medical textbooks, should be sick but have somehow escaped typical signs and symptoms of the disease.” For this project, anyone who agrees to have their DNA sequenced also agrees to be contacted by researchers if they have a mutated gene that should have made them ill but did not. This Project presents the opportunity to open the door to potentially life-save treatments! Currently you can sign up at The Resilience Project, and we encourage you to do so. With some luck, we may find a few genetic winners among us to help researchers pave the way to a cure.

Margaret Tuchman and her blogging partner Gloria Hansen

The Risk of Undertaking a Clinical Trial, part two

July 21st, 2016

Since writing the blog post entitled, “Jean Burns, Parkinson’s, and The Risk of Undertaking a Clinical Trial” (which you can read below), Jean started a petition.  You can find the petition here and we ask that you get involved and sign it.

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On July 19, 2016 Steve Sternberg wrote in U.S. News & World Report an article entitled, “In Research World, Long-Term Injury Care Hard to Come By, ethicists call for a national plan to care for injured research volunteers.”  We encourage everyone to read this provocative piece along with his prior article, “Undertake a Clinical Trial at Your Own Risk.”

Let us hear from you about this important topic!

— Margaret Tuchman, President, The Parkinson Alliance, and her blogging partner Gloria Hansen

 

Jean Burns, Parkinson’s, and The Risk of Undertaking A Clinical Trial

July 8th, 2016

JeanBurns-NIHPressenterJean Burns of Phoenix, Arizona, is a long time friend of The Parkinson Alliance.  She is a strong advocate to provide a safety net to protect participants in research who may be harmed as a result of a clinical trial.  Jean’s story started in 2003 when she was diagnosed with Parkinson’s. Being a former web developer, she immediately took to the web to learn what she could about the disease, including various trials that she could participate in.  “I joined my first clinical trial in 2003, five months after my diagnosis.”

Because she kept close tabs on the research world, and did her homework, Jean became the third person to be accepted into a National Institutes of Health clinical trial on GDNF gene therapy, a therapy that might slow the progression of the disease. This was no small undertaking.  As part of her five year commitment, she has thus far had MRI-guided brain surgery, 9 MRIs, 3 PET scans, and three lumber procedures.

The surgery, however, almost didn’t happen when Jean read about all of the things that could go wrong.  Even though only a remote possibility, some of the complications included a stroke, seizure, brain hemorrhage, even being left in a vegetative state. Because Jean is the child of a parent who had a stroke and needed long term care, she knew first hand the difficulties and expense such a complication could create.  She naively thought that if she were harmed, she would get all needed medical care from the NIH.  Then, while reading the 21-page consent form, on the last page she found her answer. “I learned I could stay at the NIH hospital for a month. After that I had the right to sue the US federal government. What a surprise! There was no long term care.”

Jean then had a decision to make.  Her health was rapidly declining, and she was afraid for her future. Although she was concerned about the possible complications, she also felt she had no other choice but to participate in the trial. She signed the content, and on March 7, 2014, she had 11 hour brain surgery to inject the experimental treatment into four areas of her brain.  She recognized that every precaution was taken and she had what she called “superb care” (although it will be years before the trial results are in).  While Jean does not regret her decision to participate in the trial, she continued to question why there is no safety net in place for trial participants. When she talked to the department about her concerns, she learned the policy has nothing to do with her doctor or his team.  Jean appealed to the ethics experts at the NIH Clinical Center where her surgery took place.  She made such a strong case and good impression that the NIH ethicists invited her to became the first ever patient-participant presenter to tell her story before the NIH Grand Rounds held in Bethesda, Maryland.  The purpose of the NIH Grand Rounds it to present an issue that raises what is believed to be important ethical issues to discuss.

On February 4, 2015, NIH ethicist David Wendel presided over the Grand Rounds topic “Should There be a National System to Compensate Subjects for Research Related Injuries?” You can watch the presentation here.  He began by stating that the issue of compensation in various situations for research related injuries has been around for a long time.  He mentioned countries, such as Uganda, Brazil, India, the Ukraine, and most of Europe has such a program in place. He stated that in 1979 the Presidential Commission for the Protection of Human Subjects of Biomedical and Behavioral Research ruled that it was a matter of justice to have some kind of compensation to protect participants of clinical trials.  “There should be the development of national pilot programs to see how we could implement, on a national level, compensation for research related injuries in the U.S.” Some 20 years later a national program was again called for, as it was in 2006, and again in 2011.  He also read what is in the policy of one institution. “We will provide acute care that you need for any medical injuries that result from this research, and we will bill you and or your insurance company for that care. University sponsors do not provide any other symptoms of compensation for research released injuries.” Today, there still is no national policy on this issue. Next he introduced Jean who was interviewed by Scott Kim, and Jean told her compelling story.

The next speaker was Ken Feinberg, an attorney and the administrator of major compensation funds, such as the September 11 Victim Compensation Fund of 2001, One Fund Boston (the compensation program following the Boston Marathon Bombings), the BP Deepwater Horizon disaster, and several others. He stated that such a fund is a “very complicated provocative topic” and that “determining eligibility for compensation is a very sophisticated difficult assignment.”  He posed many questions as way to break down the issues. Do the policy makers want such a fund? Where is the money coming from? How much money is there?  Who is eligible to receive such compensation? Is it a tort based system? A worker’s comp based system? What are the proof requirements that a victim demonstrates that the injury is a consequence of the research? How do you prove it? Is it 100% the cause? 50% the cause? 10% the cause? What are the consequences of taking the compensation? What are the due process requirements? Who is administering the program? You signed a consent form. Is a public policy encouraging these consents?    He stated, “There has to be a public policy basis, an end game, an objective when you compensation research victims.”

Jean countered Mr. Feinberg’s list of questions, believing they were a bit off topic. “I think we can all acknowledge, if I undergo brain surgery and have a stroke on the table, that was research related. If I have a hemorrhage on the table, that was research related.” Jean is looking for some type of insurance policy, a safety net. Regarding signing the consent form, she countered, “You have to acknowledge that you may be dealing with patients who are desperate for better treatments or a cure. And so sometimes this is our only recourse.” In Jean’s final point, she asked, “Do our researchers want to continue to run clinical trials and studies? Do they want to continue to have patients volunteer? Because if we’re not treated well, we may dry up.” Mr. Feinberg noted that her questions could answer public policy objectives.

Another person from the audience suggested a principled basis for compensation in the form of needed healthcare. “One could be gratitude and the other would be justice in a specific sense of making a person whole.” He gave an analogy to military service. “We can think of participants … as putting their bodies on the line. We can have a compensation that consisted in healthcare services that were needed to make them as whole as possible.”  Like with veterans, “We could do the same for those who put their bodies and sometimes their psyches on the line in serving as human research participants.”

Steve Sternberg reported on this issue last month in an article entitled, “Undertake a Clinical Trial at Your Own Risk,”  in USA News.  In it, Elizabeth Pollard, Executive Director of the World Parkinson Coalition, stated that “Without research volunteers, test of new drugs will stall. Their volunteering is a currency. They are as valuable as the investors who are financially backing the studies.”

Jean states, “The NIH actively looks for volunteers for its clinical trials and calls them “heroes.” She doesn’t understand why people are not as appalled as she is.  “It does require courage to undergo experimental brain surgery without a safety net. And while at that time I felt I had no other options and took a leap of faith, I am now taking a step back and will no longer recommend that other human beings participate in high risk clinical trials.”

We thank Jean for all that she does to bring attention to this matter. But, we want to hear from you. What do you suggest we in the Parkinson’s community do to bring about a national policy to protect research participants in clinical trials?

— Margaret Tuchman, President of The Parkinson Alliance, and her blogging partner Gloria Hansen

 

 

 

 

Mindfulness and Parkinson’s Disease

June 7th, 2016

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Becoming “mindful” has entered the American mainstream as evidenced by the countless books and articles devoted to the topic.  At its most basic, being mindful is being consciously aware of something in the present moment and accepting that awareness without judging it.  Many claim that being mindful results in a variety of benefits.  It apparently is good for our bodies, possibly boosting our immune system, and good for our mind, by helping to reduce stress and depression, and it can even tune out distractions and help us better focus.  But can mindfulness possibly play a role in helping to treat  Parkinson’s?  In trying to answer this question, we came across a clinical study written by Barbara Picket, MD, M.P.H. and researchers at the University of Amtwerp in Belgium called Mindfulness Training among Individuals with Parkinson’s Disease: Neurobehavioral Effects.

For this study, persons with Parkinson’s took part in a study in which half of the group were assigned to a mindfulness-based group and the other half to a usual care group.  Those involved in the mindfulness group had weekly sessions that included things like yoga and sitting medication.  They were also instructed how to practice mindfulness at home.  At the start of the study, all participants had a MRI of their brain.  At the end of the study, each had another MRI to see if the MRI recorded any changes in their brains. Interestingly, for the individuals in the mindfulness group, there were changes that included an increase in grey matter density in the left and right hippocampus and other areas of the brain that was not seen in the participants in the other group.

The study concluded that “Even with advances in symptomatic treatment, there is a need for adjunct person-centered therapeutic approaches to help improve the well-being of people who are faced by this disease in daily life. … Mindfulness training, as taught by qualified and experienced teachers, may offer a more participatory medicine, empowering the individual by engagement to learn how to strengthen internal resources to help cope with chronic disease. Mindfulness training may help to restore some degree of self-determination in the experience of living with PD. This is in line with person-centered research that employs scientific methods that are holistic, integrated, and transdisciplinary.”

It is also noted that caution must be used in interpreting their results because of acknowledged limitations of the study.  Even so, the study may demonstrate that a program of mindfulness training for people living with Parkinson’s can be beneficial. The study is available under the Creative Commons Attribution License.  You can read it at Parkinson’s Disease, a peer-reviewed, open access journal, at http://dx.doi.org/10.1155/2015/816404.

If you’d like to try adding mindfulness to your day, there are several resources that will help get you started.  Mindful.org has an article called 11 Steps Toward Daily Mindfulness .  Its goal is to help you avoid going down the “same old mental ruts” and to instead become aware of where your attention is and “deliberately changing the focus of attention.”

In this Ted Talk, mindfulness expert Andy Puddicombe describes the power of refreshing your mid for 10 minutes a day.

 

In this TED talk, Pico Iyer talks about the insight that comes with taking the time for stillness.

 

Do you have Parkinson’s and practice mindfulness?  Please let us hear how it is working for you!

– Margaret Tuchman and Gloria Hansen, The Parkinson Alliance