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!

Happy Holidays GIF - Daholiday Minions GIFs

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!

Can You Live Well With PD?

With the World Parkinson’s Congress coming up in June, I have been considering submitting an abstract for the Poster Display at the Congress.  One of the categories for submission is “Living Well With Parkinson’s Disease”.  I started thinking about what works for me to live well with PD, and then decided to ask the 950+ members of a Women with PD Facebook group that I participate in, what works for them.  On line, we often discuss different symptoms, medications, responses to medications, etc.  But the women in this group also like to talk about the positive things in their lives.

In one long term study,  Complementary & Alternative Medicine Care in Parkinson’s Disease, (CAM Care in PD), Dr. Laurie Mischley, of Bastyr University, is looking at people who are living well with PD with the hope of finding dietary and lifestyle factors associated with a slower disease progression.  The twice annual survey asks about your diet, exercise, medications, alternative treatments, etc.   If you are not familiar with her work, click on the link above to find out more about it and to sign up for her study.

I decided to take a slightly different angle and ask the women what THEY think hedownload.jpglps them to live well with Parkinson’s.  So I posted the following to the FB group in November:

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

This is by no means a scientific study.  As a blogger, I like to poll my readers occasionally on a topic that interests me.  I look for trends in order to write about a topic.   For this poll,  I have about 60 responses so far,and it became clear very quickly that Exercise in any form is the most positive factor for living well.  Friendships with other women with PD is also very important to them.  Having friends with PD means that they have someone who knows how they are feeling and understands what they are going through.  Interestingly, Family-including a supportive spouse- and Faith were tied for third.

On the negative side, Sleep problems, including insomnia, fatigue and more, was the overwhelming winner.  Balance and Gait problems were second and Anxiety was third.

The one thing that was missing is “Staying Active”.  Only a few people mentioned anything related to this.  I realized that it was an important missing piece when I read Blogger Sherri Woodbridge’s Nov. 28 post in Parkinson’s News Today

She says:  Being active involves more than movement on your part. It includes a state of mind to persevere, to keep putting one foot in front of the other, and to not give up even when you feel like quitting.

I could not say it better than this, and yes, this is the one thing that keeps me going.  Since my husband retired 7 years  ago, we have traveled extensively around the world.  We go to the symphony, theater and sporting events, often with friends.  We are active in our community and spend time with our children and grandchildren.  And we both find time to exercise almost daily.  He plays golf, I still play tennis.  Sitting home and doing nothing is not an option for us.  As a result, I do not feel the isolation and depression that plague many people with PD.   I also feel good physically most of the time.   My biggest problem is the fatigue from poor sleep.  But I don’t let that stop me.  I have learned my limits and will rest when I need to, especially when traveling.   10 years after my diagnosis, my progression is still slow and I have not had to change my lifestyle very much.

We are fortunate that today that our doctors encourage exercise and being active, something that Parkinson’s people were discouraged from doing in the not too distant past.  For many of us, living an active life and exercise are the most important things that will make our lives better with PD.  Even if you have limited mobility, try to get out and and do things, even if it is just going to a movie.  You will find that the more you go out and do things you enjoy, the better you will feel.

If you would like to participate in my informal survey,  please send an email to me at twitchywoman18@gmail.com.  This is for all people with Parkinson’s only.  No caregivers, please.

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

 

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).

 

Giving Thanks Once Again

 

Yes, it’s that time of year again.  As we move into the holiday season, it is a good time to look back on the past year and reflect on the things that we can be thankful for.   I know that for many people with Parkinson’s Disease and other chronic diseases, it is often difficult to find anything good in our lives.  However, if we start by looking at the small things, we may see that there is much to be thankful for.

I saw this morning that Parkinson’s Life, from the UK, just reposted my blogpost from 3 years ago, about 10 things to be grateful for on Thanksgiving.  So if they could use it again, I can.  I reposted this 2 years ago with some changes.  So here it is again, with a few more changes of course, because life has changed in the last 3 years.

10.   Getting by on little sleep gives us much more time to spend playing  games on our iPads in the middle of the night, while we are deluding ourselves into thinking that these games may actually help our brain cells regenerate.  I have cut back on the games in the middle of the night, but sleep still eludes me.  The latest research is showing that some of these brain games actually do help with memory.  

Writing this blog is just one of my OCD behaviors.

9.  We can blame our Obsessive/Compulsive behaviors (see #10) on our medications and the non-Parkies will believe us.  Writing this blog is just one of my OCD behaviors.  And because of this, I have begun writing letters to the editor and to others to express my opinion.  And some have even been published.   I have become much more vocal about many things.

8.  Waking up at 5:00 am doesn’t seem so early anymore.   But why am I always late to my 8:30 yoga class? (See #10. Still playing those stupid games on my iPad)   Still waking up too early, but I get to walk my dog at dawn and enjoy the sunrise.  And then I play those stupid games….. Still can’t seem to get to yoga on time, but we had another grandchild this year and I often talk to her mother as I am getting ready to leave.   Besides, facetime with the grandchildren is much more important than being on time anywhere.

7.  I can do things with my left hand now that I would not have been able to do if that damn tremor in my right hand didn’t act up when I am trying to do something like eating, writing, brushing my teeth……you fill in the blanks.  Fortunately Sinimet has been very effective for me and I am right-handed again.  Yeah!  Another thing to be thankful for. Sinimet is still my saviour!!!

6.  Living with PD has taught me to be more pro-active about my health.  I keep up with the latest research and always go to my doctor with a list of questions and concerns.  This is probably the most important thing that I have learned in the last few years.   My internist jokes that I know more about PD than he does.

5.  All of the new friends that I have made who also have PD.  We can laugh and cry together about things that non-Parkies would never understand.  Last January I started a group for women with PD in the Los Angeles area.  As we have gotten to know each other, friendships have blossomed.  We really do have a special bond because of PD. This really is a special bond.  We found each other because of PD, and we are there to support each other cope with PD and other issues.  More importantly, we also get to celebrate many good things together.

4.   Fortunately I have a slowly progressing form of PD, which is controlled by meds.  Better living through Chemistry is my mantra.  And my progression continues to be very slow.  And for that I am very thankful.  The progression is still slow.  I was diagnosed about 10 years ago, and I am very thankful and grateful that I really haven’t had to change much in my life because of Parkinson’s.

3.  Laughing with PD.  When all else fails, I can always blame stupid things I do on that !?@$#  tremor.  Enough said…..  

2.  Loving with PD means cherishing the life my husband and I have together and making adjustments as we need to when that @$#% Tremor gets in the way again.  Our third grandchild was born in July, adding to the joy in our family.  We are truly blessed.  My husband, my daughters and their families give me the greatest joy.  Our fourth grandchild was born this year, and I am most thankful that I can still sit on the floor and play with all of our grandchildren.

1.  Living with PD has enabled me to reach out to others like you, hopefully making all of our lives just a little bit better.  I thank all of you for your support over the last year and I hope that we will continue the dialogue for many years to come.  Thank you!   Your ongoing support of this blog has been a giant dopamine boost for me.  Looking forward to sharing my thoughts with you again in the coming year.

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One last thank you:   Thanks to all of you, Twitchy Woman was listed first in Everyday Health’s 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive  and received recognition for the  third year in a row from Feedspot, ranked #30 in their top 50 Parkinson’s blogs.