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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Travels with Parkinson’s

It’s a challenging, life-changing condition, but not a death sentence

Debbie Shapiro

We returned home from Israel on Tuesday, and it has taken a few days to settle back in.  A big time change is not easy for people without medical issues, although Mr. Twitchy and I have been fortunate to usually be able to adjust pretty quickly.   The biggest issue for me and most of the Parkies I have spoken to about traveling, is the disruption of our medication schedules.  With a 15 hour flight home, coupled with the 10 hour time change, I just kept taking my Carbidopa/Levadopa every 5-6 hours and hoped that would work.  The timing of the other medications are not as crucial for calming down my symptoms.

One thing I took with me that was very useful was a pair of adjustable walking poles like these in the photo.  When walking through archeological sites and uneven terrain, I use them to prevent tripping and falls.  Because we encountered a lot of rain on this trip, the poles were also very useful on wet pavement, dirt paths and stairs.  They look much better than a cane or walker, while providing just as much safety.  I found that I only needed to use one pole most of the time.  When collapsed, they fit easily into my suitcase.  (click on the photo to see details)

Before I left for Israel, I arranged to meet with several people about research and services provided for people with PD living there.  One of the people I contacted is Debbie Shapiro, who is also a blogger for the 2019 World Parkinson Congress.   Debbie attended the WPC in Portland with Dr. Tanya Gurevitch from Sourasky Medical Center in Tel Aviv (more about her and others I met in Israel in a future post).  Debbie, a mother of 9 originally from San Francisco who has PD, was so inspired by what she saw at the WPC that she came home determined to do something for people with Parkinson’s in Jerusalem.

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Posing as a hiker with my walking stick!

Debbie’s experience was much like mine.  We both became well informed about Parkinson’s after our diagnoses in order to cope with it.  It did not take long for other people started reaching out to us because we were willing to speak to others about coping and living with the disease.  In my case, I started this blog to reach out to others more easily and share our experiences in this exclusive club.

For Debbie, it meant starting a program for people with Parkinson’s in Jerusalem where there was nothing offered. Tikvah4Parkinson, (Tikvah means Hope) provides exercise programs, boxing, support groups, etc.  In other words, a community for PwP’s.   Debbie has no background in physical therapy, speech therapy, tai chi, or any of the other things that are offered by Tikvah, but called in experts to help her put it all together.  Her program has been so successful that she is is moving into a larger space and is looking for help to manage the program.  She told me that many people in Israel believe that they will only live 5 years after their diagnosis and do little to improve their quality of life.  She wants that to change. Debbie says: “We need to make people aware of the disease and help them realize that it’s a challenging, life-changing condition, but not a death sentence.”  Because of her passion for this project, the people attending her programs are all showing improvement in their symptoms and their outlook on life.  She is definitely making life better for many with Parkinson’s in Jerusalem.

To see a video about Tivkah4Parkinson, click here

 

Tripping into the new year

Did you just fall? No, I was checking if gravity still works.   Anonymous

Somehow, when things seem to be going well, something happens to bring you back to reality.  I fell twice this past week, after having gone months without a fall.  Once when I stepped on the edge of the sidewalk and my foot gave way, and the second time in someone’s home, when I was too busy talking to someone to see a one inch step in front of me.  Both times, I fell hard, with no chance of recovering my balance.  The second time, I actually injured my self.   I landed on one knee and the opposite hand, which was holding my cell phone ( I think).  The cell phone apparently dug into my hand, resulting in immediately swelling and pain.  Fortunately, x-rays showed no broken bones, so I am left with a sore hand and wounded pride, both of which should subside quickly.

But these incidents serve as a reminder that when living with Parkinson’s, we must always pay attention to our surroundings, more than usual.  You never know what dangers are lurking ahead to take you down.  A person without PD and good balance, will usually manage to stay upright when tripping on an uneven sidewalk.  They will start to fall, but catch themselves.  But with PD, it is a different story.  My wonderful husband, Mr. Twitchy, said that I fell like a tree off that sidewalk.  I never had a chance against gravity, as I would have before PD.

Image result for trippingWhat can a Parkie to do to minimize the chance of falling?  Walking poles can help, but only if you remember to use them. I really make an effort when walking up and down steps to use the handrail, and that has helped a lot.  Uneven steps have been a challenge for a long time.  Unfortunately there isn’t always a handrail when you are out on a sidewalk.  You need to look down at the sidewalk and look ahead at the same time so you don’t walk into anything in your way.  Sounds easy, right?  Not always, especially on a crowded sidewalk.

And then there is the cellphone, which is a major distraction and probably dangerous to use while walking (as much as when driving), but we all do it anyway.   Mr. Twitchy keeps telling me to put it away while walking.  He is concerned that I am really going to hurt myself one of these days.  He is probably right, but don’t tell him I said that.

Image result for quotes about tripping and fallingFinally, I can’t help wondering if the recent falls are signs of changes in my Parkinson’s symptoms.  And that scares me more than anything else.   Mr. Twitchy keeps reassuring me that I am ok, that I just need to pay attention to my surroundings more.   And I really hope he is right about that.

 

On a totally different subject, please check out Soaring with Hope for PD – Parkinson’s on Facebook.  This is a project created by 3 friends of mine who are all living with PD.  Their goal is to reach out to the Parkinson’s Community worldwide and bring at least 10,000 origami paper Cranes, each bearing a message of hope, to the WPC in Kyoto, 2019, to be displayed in a beautiful art installation.