The Parkinson Alliance Blog

Happy Holidays!

December 23rd, 2016

Happy Thanksgiving

November 22nd, 2016

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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