Because it is World Parkinson’s Day….

There are many things I want to share with you.

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Yesterday, the first #ParkinsonsEve took place in Great Britain.  I wish I could have attended, but going to Kyoto is a priority this year.  However, those of us who stayed home will have an opportunity to watch at least some of  the conference in the next few days.  Stay tuned for the info on where you can watch it online.  For more info go to parkinsonseve on Facebook.

Update 4/15  Click on the video to see all of the conference speakers:

 

This month, the Parkinson’s Foundation wants to know your 🔑  to living well with PD.

Whether you are living with PD, are a caregiver or a healthcare professional, tell us your tip. From managing freezing to sleeping and bathroom tips — no topic is off limits. Our hope is that others can replicate your tips and make their life just a little easier.

Click here:  #KeyToPD  to share yours.

My  #KeyToPD Finding new friends with PD who understand how you feel.

12 Things You Don’t Understand About Parkinson’s Unless You Have It

Are you familiar with the website The Mighty?  I was not until contacted earlier this week by them to contribute a few quotes for  12 Things You Don’t Understand About Parkinson’s Unless You Have It,  which was published today. The Mighty, according to their website, is a digital health community created to empower and connect people facing health challenges and disabilities.  There is a Parkinson’s community on the website that you can subscribe to, and you can also share your stories, ask questions and connect with other Parkies.

Francesca ParkinsonsChampions Villa's photo.

 

And finally, there were problems with the survey that I sent out a few weeks ago asking how YOU are living well with Parkinson’s Disease.  I want to thank the 139 people who completed the survey, but unfortunately,  I will not be able to use the data.

I am going back to the questions as originally posted on Facebook.

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 

Click here to take the survey.  Any answers sent by email will not be included in the final report.  Please respond by April 22.  Thank you in advance for helping out.

 

 

 

 

 

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!

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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Did the Weighted Blanket Work for Me???

Last month, I wrote about weighted blankets for improving sleep.  After using a weighted blanket for more than a month, I think it is actually helping me sleep.  I am falling asleep faster, getting up fewer times at night, and usually going right back to sleep.  I am even sleeping later in the morning, which is terrific.  I think the daytime fatigue has even improved.

If you want to try a weighted blanket, I would suggest that you check out the reviews,

© Charles M Schulz

and get the best blanket that you can afford.  I bought two different blankets and there is a very big difference between the two.  The better blanket is on my bed.  I keep the other in my family room to cuddle up in while reading or watching tv, and to use on those few nights (which are increasingly fewer) when I cannot get back to sleep in the middle of the night.

Don’t want to lay out the money?  Pile a bunch of blankets on your bed to get some extra weight and see if it helps.  Now, while it is still winter and cooler at night.  When it is hot at night during the summer, this could be a problem for you.  IF the extra weight helps, then consider getting a weighted blanket for summer, which may not be as hot for you.  I don’t know about the rest of you, but I cannot sleep with just a sheet during the summer, no matter how warm it is.  I still need the extra weight of a blanket or comforter. Cocooning really works, which is the theory behind the weighted blankets.

So how do you choose?  Look at the ratings and comments on the blankets on Amazon or other websites.  Here are a few of the higher rated blankets:   Quility Premium Adult Weighted Blanket & Removable Cover (this is the one I like), YnM Weighted Blanket,  ZonLi Weighted Blanket.

For information on how to buy a weighted blanket, go to my post from January 22, Weighing in on Weighted Blankets.  Let me know if a weighted blanket works for you.

 

An interesting new tech device for Gait Freezing

I just saw this on another site:

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Researchers in Scotland have developed a novel wearable electronic device worn around the waist, called ‘cueStim’, designed to prevent or relieve freezing of gait, commonly described by peoplewith Parkinson’s, as a feeling as if their feet are stuck or glued to the floor preventing them from moving forward.  For more information click here.