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.

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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.

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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

Women and Parkinson’s: Closing the Gender Gap in Research and Care

When I first experienced PD symptoms, they were explained away as the stress of a working mom. I was prescribed medication for anxiety and the eventual diagnosis of Parkinson’s was not made for another two years. – Carol Clupny, MS, Women and Parkinson’s Advocate

Five years ago, a question was posed to the Parkinson’s Disease Foundation (now the Parkinson’s Foundation) by a woman with Parkinson’s Disease:  “Why are women with PD treated as little men?”  Most research did not include women, medications tested only on men were given to women in the same doses, symptoms varied, and more often than not, it took women much longer to be diagnosed and then treated for PD.  This one question led to the Women & PD Initiative hosted the Parkinson’s Disease Foundation in September 2013.  I was one of 25 women who attended and it changed my outlook on life with PD.

A year later, I was asked by Ronnie Todaro, MPH, Executive VP, Parkinson’s Foundation, to be part of the leadership team, along with Allison W. Willis, MD, MS, Assistant Professor of Neurology and of Epidemiology University of Pennsylvania School of Medicine, and Megan Feeney, MPH, from the Parkinson’s Foundation, to explore these issues more deeply in order to identify what was needed for better care and treatment of women with Parkinson’s.   This nationwide study titled The Women and PD Teams to Advance Learning and Knowledge (Women and PD TALK)  was made possible through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3998-PDF).

A research and care agenda was derived from 10 regional forums, as well as a national forum, hosted across the United States, to understand the experiences of women with PD. This agenda reflects the priorities identified by women with PD, medical professionals and care teams at these forums. The purpose of this agenda is to promote research and care practices that enable women with Parkinson’s disease to maximize their quality of life.   I have included the 9 priority areas that have been identified below.  You can read the entire publication here.

Women and PD Research Needs

Research

  1. Inclusiveness: Parkinson’s cannot be fully understood without increased representation of women in PD research, the mechanisms, progression of and treatment response.
  2. Relevance: Parkinson’s research must examine the effects of biological sex — including sex hormones as they relate to PD risk, progression and response to treatments.
  3. Quality: Existing data should be pooled and analyzed for information about women with PD.

Care

  1. Accessibility: Parkinson’s care must be more accessible to women. Programs should target health, wellness and management of PD and should help women feel comfortable and included.
  2. Personalization: Parkinson’s care should be personalized to women. Biological and gender/cultural differences influence PD health outcomes and programs should be designed to address these differences.
  3. Communication: Medical professionals and women with PD should utilize shared decision-making tools to better communicate and work together to identify goals for treatment.

Education and Empowerment

  1. Self-management: Provide women with Parkinson’s with the knowledge and tools early in their diagnosis to maintain a desired quality of life.
  2. Shared Responsibility: Care teams should better understand the needs and priorities of women with PD, being more involved and not relying on the woman to understand all aspects of her disease.
  3. Advocacy: Additional education efforts are needed to increase public awareness about PD.

I personally want to thank everyone who attended our 10 Forums and the National Forum, along with Ronnie Todaro,  Dr. Allison Willis and Megan Feeney, who worked so hard with me to ensure the success of this project.   My hope is that with this agenda, we now have the tools to reach out to physicians, other health care professionals, family members and anyone else who helps to provide care and treatment of women with PD, so that we, as women with PD, will no longer be treated just as “Little Men”.

What helps you to live well with Parkinson’s Disease?

You must do the things you think you cannot do. – Eleanor Roosevelt

Since March is Women’s History Month, I will be including some quotes from some amazing women who have made a difference.  Look for more scattered throughout the blog posts this month.

And speaking of women,  I submitted an abstract to the World Parkinson’s Congress about a survey that I posted on a women’s Parkinson’s Disease Facebook group.  My abstract was accepted and I will be showing the results on a poster in the Poster Display  during the conference.

As a blogger who writes about living well with Parkinson’s, and having been a co-lead on the Parkinson’s Foundation’s groundbreaking study on women with PD last year, Women & PD TALK*, I was curious about what other women with Parkinson’s think contributes to their continuing to live well with Parkinson’s.

I asked the following questions  in November, 2018.

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example:
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD.
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue

I now want to open the survey to anyone who is interested in participating.  The difference is that this time I am asking you to choose 3 things from the list of the most common responses that I received last time.  And of course, there will be room for additional comments at the end.

This survey will self destruct, in about 10 days so that I will have time to look at the results and write a summary and create a poster for the WPC which starts on June 4.  Being the Parkie that I am, I need the pressure to get this done.   So please respond quickly so that I don’t have to scramble like Cinderella to get to the ball!

Be kind, have courage and always believe in a little magic.
― Cinderella

And the survey says……..click here to participate

 

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  • Watch for the Women & PD TALK outcomes here in the next few weeks!

Saying goodbye to Man’s (Twitchy Woman’s) Best Friend

 

We said goodbye to our dog Lucy this morning.  This is the fourth dog that we have lost, and it never gets any easier to say goodbye.  As a friend said to me, dog’s are God’s joke on men.  They are man’s best friend, but their lives are way too short.

From the start, she was my dog.  Lucy was a rescue that we adopted 14 years ago as a puppy.  Apparently she had been abused by a man before we found her, because of her reaction to my husband and other men.  She just did not like men, especially tall men.   She was afraid of them, barked at them, occasionally snapped at them, especially my son-in-law when he visited from Chicago.  There would be a point in every visit, where he would be standing still and she would go for his ankles, just to let him know she did not approve.  Lucy quickly got the nickname of Lucifer.

Rescue dogs can be complicated.  You don’t know how they were treated before they came to you, which can make the transition difficult.  Some are so grateful that they are in a warm, loving family, that they can’t do enough for you.  Others, like Lucy,  have fears from being treated poorly or even abused.  It takes them a long time to acclimate.   Lucy bonded to me immediately, but had a complicated relationship with Mr. Twitchy.   She wasn’t so sure she could trust him, so their relationship was rocky from the start.  So much so, that Lucy had her 5 minutes of fame on a friend’s national radio talk show, where he talked about Lucy not liking Mr. Twitchy, but loved me.  Not once, but TWICE, she was the topic of conversation on his show.

Lucy was always meant to be my dog.
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Lucy, 6 months old

My kids decided that I needed a dog because I was home alone so much.  Mr. Twitchy was commuting between LA and Chicago for work, our kids were all living out of town at that time, and our golden retriever, Rusty, had died a couple of years earlier.  I had also begun having health issues at that time.  My oldest daughter started searching on Pet Finders and sent me photos, lots of photos.   She sent this one and it was love at first sight, for me anyway.  That pink nose was the clincher.

Through the years, she was a source of comfort for me as my health issues continued.  She would curl up beside me on the sofa when I was not feeling well.  And she forced me to get up and take her for walks on the days when I didn’t want to get out of bed.  For anyone with Parkinson’s or any other chronic disease, walking a dog regularly is good exercise, even if they go slowly and stop at every bush or tree.  It won’t count as cardio exercise, but it benefits you in other ways.  Most of all walking your dog combats isolation and gets you moving.  After all, dogs are magnets for other dogs, so the walk becomes a social outing, for your dog, and for you since you can’t ignore the other people walking their dogs.

I loved walking Lucy in the early mornings.  For years, she had me up at 5-5:30 am to go out.  It was so quiet and peaceful at that time of day.    In the winter, we would watch the the last stars fade and the sun rise, sometimes getting spectacular photos of clouds bursting with color just before dawn.  In the summer,  everything was quiet, except for the chirping birds.  It was our time alone with each other before everyone else woke up and the phones started ringing.  We both loved having that time of day together.

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At the beach on Thanksgiving

We will miss Lucy, but will have the memories.  And as my almost 4 year old grandson said, Lucy will go to the happy place on the Rainbow Bridge* and wait for us along with Penny, Rusty and Layla, to join her later. 🐾🐾

 

 

 

 

*The Rainbow Bridge (Author Unknown)

There is a bridge connecting Heaven and Earth.
It is called the Rainbow Bridge because of all its beautiful colors.
Just this side of the Rainbow Bridge there is a land of meadows,
hills and valleys with lush green grass.
When a beloved pet dies, the pet goes to this place.
There is always food and water and warm spring weather.
The old and frail animals are young again.
Those who were sick, hurt or in pain are made whole again.
There is only one thing missing,
they are not with their special person who loved them so much on earth.
So each day they run and play until the day comes
when one suddenly stops playing and looks up!
The nose twitches! The ears are up!
The eyes are staring and this one runs from the group!
You have been seen and when you and your special friend meet,
you take him in your arms and hug him.
He licks and kisses your face again and again –
and you look once more into the eyes of your best friend and trusting
pet.
Then you cross the Rainbow Bridge together never again to be apart.

 

Fighting Parkinson’s Every Day

I used to say I knew people in show business, now I say I know people with Parkinson’s. Barry Blaustein

 

UNADJUSTEDNONRAW_thumb_756fBarry Blaustein joined our boxing class a couple of years ago, not long after he was diagnosed with Parkinson’s Disease.  It was clear from the outset that Barry is a fighter, in so many ways.  With flowing white hair and a big smile, he attacked the heavy bags with glee.  His strength and skill on the heavy bags impressed everyone in our little group.  Barry fit right in immediately.

His story, like so many of ours, takes a circuitous route.   Barry lost his sense of smell 7-8 years ago.  Then began dragging his feet.  His voice was getting lower and he just seemed sluggish.   He did not know that these were symptoms of Parkinson’s.  First, Barry saw his regular doctor, who dismissed his symptoms and said that he did not have Parkinson’s.

The symptoms persisted, so Barry made an appointment with a Neurologist at Cedars Sinai in Los Angeles.  The doctor there put him through the routine for diagnosing PD, walk down the hallway, open and close  your fingers, tap your foot, etc. and quickly confirmed that Barry did have Parkinson’s.  Since no one else in his family had PD, this was a surprise.  As Barry says, he is the pioneer in his family.

The doctor recommended that he exercise 30-35 minutes a day. Barry’s fiancee  looked up classes on the internet and found boxing classes for PD (StoPD).  He took boxing lessons when he was younger and knew he had fun doing it, so decided to give it a try.  Barry also walks 30-40 minutes or bikes, and goes to Pilates a couple days a week.  He usually exercises 7 days a week,  but occasionally takes a day off.  However he has recently developed sciatica,  which Barry says is much worse than Parkinson’s.

“People with Parkinson’s are fighters”

He asked his doctor once why he chose to treat Parkinson’s, the doctor said “People with Parkinson’s are fighters”.   Barry agrees.  “We don’t sit back and do nothing.  I didn’t do anything to get Parkinson’s (unlike many other diseases) If I had cancer and  smoked cigarettes, I would say I shouldn’t have smoked.  If I had heart problems or a heart attack, maybe I should have lost some weight.  But I didn’t do anything to cause PD.”

He is fortunate that he gets more sleep, unlike many others with PD.   Melatonin works for him and helps him to sleep better.  Otherwise, he takes Sinimet (Levadopa/Carbidopa) only. His tremor has gotten a little worse, but he notices it more than other people.  He also gets more tired,  but that could be from getting older.  His handwriting, which was always terrible, has gotten really bad.  Now he says  “I will write stuff and then will look at it and think, what the heck was I doing”.  Usually he types and if he starts to shake, he will stop and exaggerate the shake and shake it off.

Having Parkinson’s doesn’t really affect his work.   After a long career as a film writer and director, he turned to teaching screen writing at a local university.  For the last 7 years, he has been primarily a college professor.  He tells his students he has PD, always making the same speech at the beginning of a semester:  “I have Parkinson’s so if you see me shake, that’s a tremor from Parkinson’s, so don’t worry about it. If my voice gets low, just tell me to raise my voice, if I say anything really mean to you, that’s not the Parkinson’s, its exactly how I feel about you.  They all laugh.”  He approaches it with humor which puts them at ease.

Recently, he went back to writing scripts and along with his writing partner David Sheffield, he just wrote a new movie for Paramount:  COMING 2 AMERICA,  a sequel to COMING TO AMERICA, that the two of them wrote 30 years ago.   “They didn’t know it was being written by a guy who has Parkinsons”

This past year, Barry has gotten involved with the Parkinson’s community.   Last fall, he was a speaker at the Parkinson’s Foundation Walk in Los Angeles. He had participated in a few walks before and his daughter got very active with the Parkinson’s Foundation as a result.  She created some background materials about Barry to send to them.  After meeting with with Barry, they asked if he would be interested in speaking publicly for them.  He went to a workshop a couple of weeks ago and was asked to become a spokesperson for the Foundation.   He will be going to speak around the country, do some PSA’s (Public service announcements) and other things.  As he says, he is the new “Jerry’s Kid”.  He used to say, “I knew people in show business, now I say I know people with Parkinson’s.”

What does the future look like for him?  So far he has made no major changes in his life,  but knows he will eventually have to consider making a move because he lives upstairs in a duplex, and the stairs can become a problem.   He is looking forward to speaking on behalf of the Parkinson’s Foundation, and becoming more involved with the Parkinson’s community.

I asked if knowing People with Parkinson’s has changed his life.  He went to a support group once but didn’t find it all that helpful.  He said that too often, people are just griping.  However, Barry said the people in the boxing class are very brave. “I wish our boxing group got together every once in awhile and talked about our lives.  We are more than just our disease.”   What a great idea!  Let’s make it happen.

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