Reaching a Milestone and an Inspiring New Book to Read

Look at you.  You’re in Spain.  You’re walking out here on the Meseta.  How many people are doing this?  How many people with a chronic disease do you see out here today?……Do something good, Carol.  Find something good to do with it.”    From The Ribbon of Road Ahead

 

Twitchy Woman has reached a milestone.  This is post #201 ! ! !   When I started this blog, I never expected it to  continue for as long as it has.  And what a ride it has been. Somehow, I have posted almost weekly in the last 4 years, and am honored to have made Best Parkinson’s Blogs lists at least 6 times (see the sidebar).  Other opportunities for me have come up as a result.   I want to thank everyone of you who has been following me, whether it has been for 200 posts or just 1.  My initial blogpost was seen by just 15 people.  There are now over 1500 followers.  Your support and encouragement have kept me going.

On my way to Kyoto!

Speaking of opportunities, as you may know, I submitted an abstract to the World Parkinson’s Congress.  At medical meetings, researchers are asked to submit abstracts (a brief description of their research study).  If their abstract is accepted, they will then create a posWPC2019_LOGO_246x153.gifter based on their research for display.  For the WPC, People with Parkinson’s (PwP’s) were also encouraged to submit their ideas (abstracts) for living well with PD.  There will be hundreds of posters on display throughout the conference.  If you are attending the WPC, look for me on Wednesday, June 5,  between 11:30-1:30.  I will be at my poster in space 649 to talk about it and I would love to meet you.

Thank you to all who responded to my survey for this project.   I cannot give you the final results until after the WPC, but the most important things for someone to live well with PD are Exercise and Getting Enough Sleep.  Neither of these should be a surprise for anyone with PD.  If we don’t have a good night’s sleep, the daytime fatigue can be debilitating.  And that fatigue manifests itself in many ways.

As far as Exercise is concerned, the more you do, and the more intense it is, the better.  I had hand surgery last Thursday and have not been able to exercise since.  I am already noticing, 5 days later, that my tremor is acting up more.  We need to think of Exercise as medicine, and I have not been taking my medicine.

The Ribbon of Road Ahead

And speaking of exercise, I just finished reading an inspiring new book by fellow PwP, Carol Clupny titled The Ribbon of Road Ahead.  After her diagnosis of Parkinson’s, Carol was determined to walk The Camino de Santiago. If you have traveled in northwestern Spain, from Pamplona to Santiago de Compestola, you may have seen hikers walking along the route marked with seashells pointing the way.  Pilgrims from all over the world come to walk on this grueling 500+ mile network of pilgrim routes, from Southern France to Spain, for many different reasons, often hiking through rocky mountain passes.  The Way, as it is called in the movie with Emilio Estevez and Martin Sheen, is difficult for anyone without disabilities, but Carol was not going to let that stop her.  With her husband, son and other family members and friends at her side, she recounts the obstacles she faced as well as the accomplishments.

Carol went back 2 more times to walk parts of the trail with other women whom she had met along the way.  She has also biked across Iowa 3 times with her husband on the annual 450 mile RAGBRAI (The Register’s Annual Great Bicycle Ride Across Iowa) with the Pedaling for Parkinson’s team.  Much of the ride was done on a tandem bike named Grepedo.  She did all of this before her DBS surgery a couple of years ago. The final chapters recount her surgery and the small successes that were the beginning of regaining her life before PD.  Her story is inspiring, and shows that determination and grit can help those of us with a chronic illness get through some of the more difficult times.  Carol has indeed done something good by sharing her story with us.  Look for Carol at the WPC in Kyoto if you are there.

 

The Flu

I wasn’t supposed to get the flu.  I got my flu shot in September and it has always worked for me in the past.  I don’t know what happened.  We went to Chicago last weekend for a wedding.  It was cold.  It was windy.  It was snowing.  I could not warm up all weekend.  We came home Monday night to much warmer Los Angeles and two days later it hit me!

 

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I woke up with a cough on Wednesday and thought it was just a cold.  By Wednesday evening I could not move.  Chills, fever, headache, all the usual symptoms.  I think the last time I had the flu was 25 years ago.  I got it first and because the incubation period can be as short as two days, the rest of my family and a houseguest fell like dominos within a week.  One right after the other.  There was no test for the flu and no Tamiflu to ease the symptoms.  This time I went to the doctor and was tested for the flu.  The next morning I got an email stating that my results were positive for Influenza A.  I called my doctor, got Tamiflu, as did my husband as a preventative.  No more domino effects.  This was so easy.  I think that it has definitely shortened the duration and lessened the severity of the flu for me.  I might even get out of the house tomorrow after only 4 days.

So the big question is how this will play out with Parkinson’s.  The good news is that the cough hasn’t been too bad, so I have not had to worry about decongestants that interfere with my PD meds.  But I miss my exercise routine and I think it will be a while before my energy levels return to normal.  At least I got out to walk the dog this morning.  In the warm SoCal sunshine.  Yay!

 

 

On a separate note:  My abstract for the Poster Display at the World Parkinson’s Congress has been accepted.  The topic is Living Well With Parkinson’s Disease.  My abstract is titled “What are the most important factors for living well with Parkinson’s Disease? An informal survey from a women’s Parkinson’s FaceBook group”.  More info to follow once I figure out what I am actually putting on the poster.  #wpc2019  @WorldPDCongress 

Year End Musings

Wow, another week and we start a new year!   So much has happened in the last year on the  personal front and in the Parkinson’s world.

It has been a good year for Mr. Twitchy and me.  We welcomed our fourth grandchild in April.  My Parkinson’s has remained fairly stable since being diagnosed about 10 years ago, for which I am eternally grateful.  So other than the usual aches and pains of growing older or as a result of stupidity on my part for thinking that I can still do things I did at 20, (we don’t want to talk about that),  life is pretty good.  Mr. Twitchy had back surgery in July and is looking at replacing knees or hips or some other joint sometime in the not too distant future.  None of this stopped us from going on adventures to Israel and Iceland this year, although it may have slowed us down a little.

In the Parkinson’s world, we are busy planning our trip to Japan and the World Parkinson Congress in June.  I am looking forward to hearing about the latest research on PD. There are so many new theories that are being investigated about the causes of PD, where it starts in the body and why, as well as new breakthrough treatments that are in the final stages of clinical trials.   Some of this research is going on in Kyoto right now, so my hope is that we will hear the latest from those doctors and scientists doing the research when we are there.

One project I have been involved in is the  Parkinson’s Foundation’s national effort to address long-standing gender disparities in Parkinson’s research and care through the “Women and PD Teams to Advance Learning and Knowledge,” or “Women and PD TALK” project.  I have been honored to be the co-chair this project.  We held 10 forums around the country in the last 12 months, bringing together women with PD and caretakers, doctors, therapists and other related professionals.  A final national forum in Houston last October brought together the chairs of the local forums along with national leaders with the goal to create an action plan for the treatment and care of Women with Parkinson’s, which will be published in the next few months, in time for the WPC.

Trying something new for sleep:

My daughter suggested that I try a weighted blanket for sleep.  I am trying out the Brookstone Nap Weighted Blanket and will write about my experience with it in the next few weeks.   There are a lot of choices and things to consider when buying a weighted blanket so I want to get some more information before I write about them.

Some good news just off the press:

Acorda Therapeutics, Inc.  today announced that the U.S.
Food and Drug Administration approved INBRIJA™ for intermittent
treatment of OFF episodes in people with Parkinson’s disease treated
with carbidopa/levodopa. OFF episodes, also known as OFF periods, are
defined as the return of Parkinson’s symptoms that result from low
levels of dopamine between doses of oral carbidopa/levodopa, the
standard oral baseline Parkinson’s treatment.

Finally, I have been approached by several different bloggers this past year for interviews .  The latest was published this week by Kai Rosenthal on her blog  a simple island life.  Kai lives in Honolulu, and blogs about PD, lifestyle, food, fashion and other things she loves.  It is an interesting mix of ideas that she puts together beautifully in her blog.  I hope you enjoy it.

You can find links to other interviews and more by clicking on Press at the top of this page.

Looking ahead to 2019, I wish all of you a very wonderful, healthy new year, with lots of good news in the PD world.  Merry Christmas and Happy New Year!

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My Non-support Support Group

 

Three years ago, I had the privilege to attend the Parkinson’s Foundation’s Women & PD Initiative.  At the end of the conference, we were asked to reach out to other women with PD in our communities.  Some of the women chose to hold a conference in their city for women with Parkinson’s.  Others formed support groups or other activities for women with PD.

From the beginning, the women who came said that they did not want this to become a monthly “gripe” session.

I decided to reach out to other women to get together on a regular basis for what eventually became what we lovingly call a “non-support support group”.   Instead of a traditional support group format, where there is an occasional speaker, but more often a facilitator led discussion, we have no format.  From the beginning, the women who came said that they did not want this to become a monthly “gripe” session.  They wanted to get to know other women with PD in a non-threatening environment.

We often have a speaker or activities to help us live better with Parkinson’s.  So we have had sessions where we boxed, we danced, did yoga, made art and drummed.  We have had a sex therapist speak to us.  A PD psychologist, a speech therapist and more.  Sometimes, we invite spouses or the men from my boxing group, depending on the topic of the day.   When American Ninja Warrior, Jimmy Choi, came to Los Angeles, we had him join us for an interview about his journey with PD, followed by an obstacle course and a potluck BBQ.

This past week, we had a holiday celebration, with both women and men, with a private docent led tour of  The Notorious RBG:  The Life and Times of Ruth Bader Ginsberg exhibit at the Skirball Cultural Center, followed by a tea.  When I tried to facilitate a short discussion at the tea, no one was interested.  After all, that is for support groups.  They were just happy to do something stimulating and informative and get together with friends.

The bottom line is that sometimes, we just like to get together and have fun or learn something new.  Many of us know each other through this group or from other activities in the PD community of LA.  So when we do meet, it is more often because of a special opportunity that has come to us that is different than what most support groups or PD conferences can offer.  And of course, there is always food.  We don’t meet as often as we did at first because, well, we are just busy women with full lives.

But something magical has happened.  Many of us have formed close friendships with others in the PD community.    Because LA is so spread out, women have come from places an hour or more away just to see the friends that they have made through this group.  Women who understand what they are feeling without even talking about it.  Women who were newly diagnosed and afraid to meet others with PD have joined us and discovered that there is a welcoming community for them that is there to help them on their own personal journey with Parkinson’s.  Most importantly, they have gained confidence from seeing that their diagnosis is an opportunity for them to do new things, not an end.  Many have discovered ways that they can live better with PD.   And others have created their own ways to reach out to others in the PD community.

Because of this group, I spent a lot of time at the World Parkinson Congress in Portland with two of the women who eventually created Soaring with Hope for PD.  We have all become very close friends.  Although I do not live close to them, we try to get together regularly for lunch or at other local PD events.  They reached out to me to help spread the word about Soaring with Hope from the beginning, and I am thrilled that this has become a global project that will be one of the highlights of the upcoming WPC in Kyoto.

So I want to thank all of you who have joined me on this fun ride for the past three years.  We will continue to get together to learn, to share and just have fun.  We may not meet as often, but when we do, I can guarantee that it will be time well spent.

Happy Holidays to all of you!

The World Parkinson Congress is just a little over a year away

At the WPC you can meet advocates from around the world.  Learn from them.  Be inspired by them.  Come away with life long friends.

Jean Burns

It is time to start thinking about going to the next World Parkinson Congress in June 2019.  As an official blogger for the WPC, I have been involved in meetings and planning for over a year now and have much to share with you.

First, if you have never attended the WPC, I can guarantee that you have never attended a meeting like this.  People with Parkinson’s (PwPs) can attend any session they are interested in,, from the most technical scientific presentations, to chair yoga, meditation, sessions on nutrition, sex and PD, the latest Marijuana research and more.  Everyone has an opportunity to contribute something to the WPC, there are song competitions, video competitions for pros and amateurs.  You can even submit an abstract or poster for consideration in the Poster Display as a PwP.

There are also opportunities to volunteer at the Congress.   You can spend a few hours volunteering on-site, or apply to become a Delegate Leader to work with the thumb_20170228_124918_21962.jpgWPC to coordinate a group of people interested in attending the Congress from your area.  There are travel funds available for those who need them, to go to Japan.  Sales of Parkie the Raccoon and other items benefit the travel grant program.  For more information on the WPC 2019 click here

I like to call Soaring with Hope for PD our “Ice Bucket Challenge” for PD awareness

So what can you do now to get involved?  Participate in a world-wide effort to bring together People with Parkinson’s, their care partners, health care professionals, etc., to create an art installation for the WPC titled Soaring With Hope for PD.  Three friends of mine from Southern California, Naomi, Clara and Amy, have created an amazing project, which I like to call our “ice-bucket challenge” for Parkinson’s Awareness.

To spread the word about Parkinson’s Awareness, the official WPC Bloggers are in a challenge to collect your messages of hope for the WPC.  We want to collect a total 10,000 messages, each of which will be printed onto a hand-folded origami crane. The 10,000 cranes with messages will be displayed as a magnificent art installation at the June 2019 WPC in Kyoto, Japan. All you need to do is click this link and enter your country and message.  If you have multiple messages, you can click and enter each message separately.   And make sure to select me as your BLOGGER.  The deadline for the challenge is July 31, 2018.

 Thank you for your messages of HOPE, raising awareness for PD globally, and for helping me with this wonderful challenge.

 

I will be sending out more information about the World Parkinson Congress as it becomes available.  I hope to see you next year in Kyoto!  Arigato!

 

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