Clinical Trials for Parkinson’s Need You!

The answer is truly in all of us, working together. International collaboration is essential for speeding a cure for the 5 million Parkinson’s patients worldwide.

— Michael J. Fox

 

You may ask why you should participate in Clinical Trials for Parkinson’s Disease.   After all, aren’t they always drug trials?  You say you don’t want to be a guinea pig for a pharmaceutical company.    Well, the good news is, not all clinical trials involve drugs.  The bad news is that many researchers cannot complete their studies because not enough people participate in them.

Since being diagnosed 10 years ago, I have participated in a number of studies.  Some of them on-line, some by telephone, and others in person.  Many provide some form of compensation.  One study was a long-term study though the Alzheimer’s Center at UCLA which recruited people with Neurological disorders to look at cognitive differences.  Three years in a row, I was given a 3 hour cognitive test by graduate students, doing tasks such as recalling as many items as possible from a list of 20 words – our brains usually can process a string of 7 items, which is why your phone number is 7 numbers.  Anything over 7 can be difficult to retrieve.  Other tasks included looking at shapes and being asked to replicate them from memory, repeating paragraphs that are read to you, counting, etc.  Unfortunately this study was discontinued due to lack of funding.

This past week I went to USC – University of Southern California (I had to give the other LA university equal time), to work with Dr. Giselle Petzinger, whose research focuses on the effects of exercise on Parkinson’s.  This time, she is looking at the association between fitness and cognitive performance in Parkinson’s Disease.  She wants to see which PwP’s are doing well cognitively and if there is a correlation with the types of exercise they are doing.  This is an 18 month study that involves 3 visits to USC and using wearable devices for 1-week every 3 months.  I was number 15 in the study.  She needs 35 more people to complete the study, but recruitment is going very slowly.

IMG_1857
Stepping over an “obstacle”

The first day included a 3 hour cognitive assessment!  I remembered a lot of the exercises from the tests at UCLA.   I think everyone uses the same resources for measing cognitive ablility.  Day 2 began with a brain MRI.  Then the fun began.  I was escorted to a lab where I got to try out Virtual Reality.  After putting some sensors on my arms and legs, I put on the VR headset, excited to check it out.  I was in a waiting room of some sort, with all kinds of video games on the shelves.  The 360 view was amazing as I turned my head.  But no, that wasn’t for me to use.  Instead I was to walk down a long hallway (I did this on a treadmill) stepping over obstacles of 2 different heights.  Then I had to do it over and over, each time with different instructions.

Day 3 was even more interesting.

IMG_1863
Looking like a Christmas Tree

I repeated the task from Day 2 two more times and then I spent the next half hour getting even more sensors for my last walk on the treadmill.  Have you ever seen how CGI (Computer Generated Imagery) is done to animate a computer designed animal?  That is what I looked like.  Mr. Twitchy says I looked like a Christmas tree!  This last task was to look at gait and balance.  The treadmill has two separate treads that you walk on.  While I was walking at a fairly quick pace, one of the treadmills would slow down or speed up with no warning.  My job was to keep my balance.  I was tethered by a harness so that I would not fall.  After more gait and balance tests I was sent home with my wearables (watch and heart monitor).  I am looking forward to seeing the results of this trial.

How do you find a study that works for you?  You can start with Fox Trial Finder.  It is easy to register, and you will receive notices of trials that you qualify for.  The Parkinson’s Foundation has been following over 12,000 people in 5 countries with the Parkinson’s Outcomes Project.  Check it out to see if you can participate.  Ask your Movement Disorders Specialist or Neurologist if they know of any trials near you.   Ask your PD friends if they know of anything.  If you are interested in the USC trial, contact me at twitchywoman18@gmail.com and I will forward your info to Dr. Petzinger.

April is Parkinson’s Awareness Month.  My challenge to you for April is to find a way to get involved in research.  You can make a difference in your life and the lives of others.  Think about it.  But not too long.  As the Nike ads say “Just Do It

Some good reads for Parkies

 I won’t sit back and allow Parkinson’s to destroy my world. I’ll learn the language, understand the context of my new reality, and then encourage others to thrive with me in this battle.   Tim Hague

Over the years, I have read a number of books about Parkinson’s Disease. Some written by the “experts”, some by people with Parkinson’s telling their stories and even a few written by people trying to sell a “cure” to unsuspecting people who are desperately looking for an easy way to “get well.”

There are many books written by People with Parkinson’s, many of whom also write PD blogs.  Some are good, some are dreadful. There is a saying about PD bloggers, that if you write a blog, you will write a book. I don’t necessarily agree with this because in today’s world of sound bites and short attention spans, many of us write about whatever interests us at the time we are writing a blog post. There is no narrative, just a collection of short essays (do they even qualify as essays anymore?) that don’t always fit together.

For those of you who were diagnosed a while ago, there may be nothing new here, but I would love to hear any suggestions for books that I have missed. For those of you who are newly diagnosed, I hope that this will be give you a good place to start learning about how you can live well with PD.

I have listened to a number of these books on Audible, especially when they have been narrated by the author. Hearing it in their own voice often lends subtleties to the narrative that you don’t get just by reading the book. I also like to listen while I am out walking. Sometimes you have to keep going just to finish listening to a good chapter, so it can help you get closer to your exercise goal at the same time!

By the way, these make great gifts for People with Parkinson’s and/or their Care Partners.

New in 2018

Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined by Tim Hague –  Hague was diagnosed with  YOPD at age 46 and wonPerseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined Canada’s Amazing Race race with his son, Tim Jr., 3 years later.  The highlight of the book is his blow by blow account of the Race, which he (and his opponents) never expected to win.  Hague is truly inspirational in talking about how he lives his life to the fullest with PD. Listen to it if you can.  Whether or not you have Parkinson’s,  you will be inspired to live your best.

Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!

Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!  by Sheryl Jedlinski.  Jedlinski was one of the firstbloggers that I followed.  Always informative, humorous and a good read.  A great book for the newly diagnosed.

The Best from Previous Years:

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman.

Brain Storms: The Race to Unlock the Mysteries of Parkinson's DiseaseStill my all time favorite.  After his own diagnosis with PD, Palfreman, an awardscience journalist, wrote this insightful book about the doctors, researchers, and patients  who continue to hunt for a cure for Parkinson’s Disease.  A must read for anyone with PD and their families.

Always Looking Up: The Adventures of an Incurable Optimist         Always Looking Up: The Adventures of an Incurable Optimist by [Fox, Michael J.]        by Michael J Fox.  I recommend listening to this book if you can.  Fox is always inspirational and you can almost see the twinkle in his eye as he narrates the book.

 

Parkinson’s Diva by Dr. Maria de Leon.  Fun, informative book for womenParkinson's Diva with PD by Dr. Maria who was a Movement Disorders Specialist before she was diagnosed with YOPD.  We met three years ago at the Women & PD Initiative conference sponsored by the Parkinson’s Foundation and have become good friends.  Maria tells it like it is, with lots of humor along the way.  I challenge you to not laugh when you read about her experience after a massage.

Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition and  10 Breakthrough Therapies for Parkinson’s Disease: English Edition by Dr. Michael S. Okun.  Two very good informative books written by the National Medical Director of the Parkinson’s Foundation.

I am looking forward to meeting more Parkinson’s authors at the World Parkinson’s Congress in June.  I hope to find some new favorites to add to my list.  The 7 books listed here should keep you busy reading until then. There are more listed under the heading  My Books and Things I Like   If you have a favorite that is not on my list, please let me know (preferably in the Comments so that others can see it).

 

How to beat the “Meh’s”

I received an email a few days ago from a woman with Parkinson’s who is concerned about a decline in wanting to socialize.  She feels that her personality has changed and she is finding it difficult to explain how she feels to family and friends.  She points out that she is doing well, having had DBS in 2011 and exercising 3-5 times a week. But there is still that nagging feeling….

Probably all of us can identify with this woman.  At one time or another, to one extent or another, we have felt the need to withdraw from social situations, have lacked the energy to get out and get moving or have just found we are  . . . . apathetic, which is one of the hallmarks of PD.  If these experiences have been fleeting and short term, that is one thing (everybody has them to some extent).  But if they are persistent or long term, it is important that you reach out for professional help.

Some of this is understandably due to the symptoms we experience.  Some Parkies withdraw because they get easily overwhelmed by social situations. Others say that they just need some time alone — because they just do.  For others, speech problems, diskinesias or other physical manifestations of PD can make it difficult to socialize.

On the question of causation, Bev Ribaudo (Yuma Bev) just contributed a blog post on Apathy to the Michael J Fox website that is very informative.

She defines Apathy as:
1. Lack of passion, emotion, excitement
2. Lack of interest, a state of indifference
3. Lack of motivation

She goes on to explain how the changes in the brain of a person with PD can cause apathy.  It is a short article and I recommend that you check it out if apathy is one of your symptoms.

On the question of what to do to combat the the “Mehs”, there are some experiential lessons that have helped me and others I have talked to:  ZEDHX6k

  1.  Learn something new.  Learn a new language, take music lessons, find a new hobby that requires learning something different.   In the process, you may increase your dopamine levels and feel better.
  2. If large social gatherings are intimidating, spend more time interacting with people in small groups.  Having lunch or dinner out with just a couple of family members or friends may just be the boost you need.
  3. Create realistic goals for yourself, with rewards for achieving those goals.  Learn a new piano piece or read a book on a new subject,and get yourself a new pair of shoes, a hot fudge sundae or whatever else may motivate you.
  4. Join an exercise class with other people with Parkinson’s.  The camaraderie that ensues will give you a boost.  And you don’t need to explain how you are feeling because everyone else in the class understands.
  5. Volunteer.  They say that people who volunteer feel better and live longer.  Even if you have limited mobility, there is always something you can do.
  6. Get dressed in the morning and get moving, even if it is difficult.  You will feel better if you look better.  Lying around in your pj’s all day just encourages you to do nothing and reinforces the blah’s.
  7. Don’t write off your friends and family because you think they won’t understand.  Most of them do and are more than happy to help you whenever necessary.  As one doctor said to me when I mentioned my friends would not let me quit playing tennis no matter how frustrated I was with how I was playing,  “keep those friends!”
  8. Finally:  Look in the mirror and SMILE  You will be amazed at how much better it makes you feel.

None of these suggestions is a “cure” for apathy, but you might find some helpful for you.

We all have our down times, and we will have more in the future.  It’s ok and maybe even unavoidable to to give in to the “mehs” for a short time every once in a while.  Just don’t let it last too long.  We all have too much to do to let apathy get in the way.

100 and counting

Wow, it has been an interesting journey!  I started writing this blog in March, 2015, as a way to share my experience with Parkinson’s Disease with others.  I never imagined that I would still be writing almost 2 years later, with this my 100th post!  15 people read that first post when it was published.  Now my subscribed readers number several hundred, with many more just checking in, coming from 76 different countries.   I want to thank all of you for your support over the last 2 years.

Looking back on the past year, there have been many exciting findings in Parkinson’s research.  The most important is the change in thinking about how Parkinson’s gets started.  Research now points to changes in the microbes in the gut as the trigger for setting off Parkinson’s symptoms.*  What this means for us:  a possibility for earlier detection with a screening test, and new treatment options that begin before damage to the brain occurs.  To learn more about it, register for Michael J Fox Foundation’s next webinar  on January 19, titled  Gut (Bacteria) Check on Parkinson’s: Role of the Microbiome.   Maybe this will be the year………

There has also been a world-wide effort to change the image of Parkinson’s from the stooped over, shuffling person to someone who is actively enjoying life with PD. Photographer Anders Leines‘ photo exhibit at the World Parkinson’s Congress was highly successful.  There is also a Facebook page, Many Faces of Parkinson’s that is working to change that image.  The World Parkinson Coalition has just published a book Faces of Parkinson’s: Global Reflections of PD which can be ordered through their website.

Exercise has also been a positive force this year for PwP.  Many studies have shown that exercise can be more beneficial in relieving Parkinson’s symptoms that anything else. See Exercise May Be Real Medicine for Parkinson’s Disease.  Yoga, boxing and tennis keep me going.  If you are not exercising, 2017 is the year to get moving.  There are so many options, either in group exercise classes, online videos or just walking.  Just check with your doctor before beginning any exercise program.

I was fortunate to attend the World Parkinson Congress in Portland in September.  This amazing conference brought together over 4300 people from around the world, People with Parkinson’s and their caregivers, doctors, scientists, and many others in related fields for 4 fabulous days. I am so glad that I met many of you there.  I hope that we can all meet in Kyoto in 2019 at the next WPC!

My Parkinson’s resolutions for 2017:

  1. Keep on moving:  exercise every day.
  2. Keep a positive attitude.  Look in a mirror and smile – it will brighten your day.
  3. Participate in PD research.  PwP’s are an important part of finding the cure,
  4. Get more sleep.
  5. Hug my grandchildren as much as possible for they are the best medicine! (Thank you Linda B for saying that).

Have a wonderful and healthy 2017!

Some photos from 2016

 

 

 

Ups and Downs

You suffer the blow, but you capitalize on the opportunity left in its wake.

I try to stay upbeat about having Parkinson’s, but some days things just don’t go right.  Actually, it is some weeks.  As I wrote a few weeks ago, I kept losing things.  And then, I ran out of Requip.  I thought I had another bottle, but I couldn’t find it.  An email to the mail order pharmacy to renew the prescription followed.  But the prescription had no refills left and took a few precious days to get approval. The meds were shipped out, but then disappeared!  There was no tracking info, so I called them back to get approval for an emergency refill, which  was approved.

When I went to the pharmacy the next morning, I was told that no, the mail order pharmacy did NOT approve the emergency refill.  So I spent the next 45 minutes arguing with the bureaucracy that insisted that the medication would come that day, so they would not approve it.   Yes, the refill came in my mail, very late in the day.  By then I had been off of it for about 4 days and was feeling the effects of withdrawal from it.   To make a long story short, it took about 10 days from the time I ran out of Requip until I started feeling halfway normal.

This all happened because I lost track of my prescription.  It was my mistake that was exacerbated by the insurance company policies.  As Michael J Fox says, you have to capitalize on the opportunities that your mistakes have created.

I think I am done with mail order prescriptions.  My life is too stressful as it is, and I certainly don’t want to add to it.  My local little pharmacy takes care of me just fine and I would rather give them the business.  As someone who takes multiple medications, as I am sure most people with Parkinson’s do, it is important to have some control.  When the insurance companies take that away from you, there is little you can do.  I can’t imagine how people who don’t know how to advocate for themselves and work the system manage to get the care and meds they need in a timely manner.

Today we are leaving for a 3 week trip to Spain and Portugal and the most important thing on my checklist is “where are my meds?”  Everything is in my carry-on bag which will stay with me the entire time.  In the original bottles with the prescription number and name of the medication.   I can’t risk any more down days while on vacation.  Now I am in control.