One is the Loneliest Number

One is the loneliest number
One is the loneliest number
One is the loneliest number that you’ll ever do

Three Dog Night

I read an article in The Week magazine yesterday titled An Epidemic of Loneliness. According to the authors, social science researchers define loneliness as “the emotional state created when people have fewer social contacts and meaningful relationships than they would like – relationships that make them feel known and understood.”  They go on to say that up to 50% of Americans feel lonely.  Isolation is on the rise for various reasons, and as you probably know, it can be very high among People with Parkinson’s (PwP’s).  The feeling of isolation can be devastating in many ways.

Many PwP’s withdraw from social activities at some time. dog-403699__340.jpgOften they withdraw when first diagnosed, because they do not want anyone to know that they have PD or they are afraid people will notice their symptoms.  Later they withdraw because of mobility issues and worsening symptoms.  The loneliness they experience may cause other problems.  According to the authors of the article, loneliness triggers the release of stress hormones, particularly cortisol.  Normally cortisol helps make people more alert.  These same hormones can  damage health over long periods of time, causing high blood pressure, a weakened immune system, depression and more. For a PwP, isolation can cause a downward spiral of poor health and worsened symptoms, making it increasingly difficult to get out and do anything.

A reader in Adelaide, Australia writes ” At the moment most of my continuing and nurturing social connections  are not exclusively with PWP people. I suspect that might change over time as things change.”  For now, he is incredibly involved, both with PwP’s and with the community at large.  He sees those connections as essential for him to keep on going.   “Membership of these groups provide a series of lifelines and vehicles for connection and care. I’ve started to see membership of those groups and the thought and action they sometimes require as contributing to an ‘ecology of hope in illness.’

I agree with him 100%.  Being a part of a group is one of the best things you can do to reduce loneliness.  Even if you cannot physically attend, with today’s technology, you can video chat with a group and still feel that you are a part of something.  Maybe you chat on-line, or participate in a Facebook group where you have interaction with others. Any contact that you can make with others who understand how you are feeling can give you a much needed dopamine boost.

Recently I wrote about the “non-support group” that I started.  The underlying factor that has made it successful is that the women who participate have found those necessary connections with others that give them hope.  Sometimes just knowing that there is someone you can call, or email, when you are feeling lonely and isolated, is enough to give you hope.  And that goes for any chronic illness.

 

download.jpg

 

A word from Mr. Twitchy

…to these “lay” eyes, the single most important thing that each of you can do is exercise, exercise, exercise and then . . exercise some more.  Joel Krischer

From my wonderful, supportive husband, the last post of the year!

Dear Twitchsters:

As a regular (and not disinterested) reader of Twitchy Woman, I threatened her with writing a comment to her most recent post to correct some factual inaccuracies in her description of my various musculo-skeletal sufferings, but more importantly, to offer some sideways views into the PD world.  She said I should.  She will likely regret that.

But first, a few words about TW, herself.  We will sidestep the intra-familial dispute about which of us came up with the name for the blog (hint: it wasn’t her).  There are no words that can express how impressive she has been (and how proud I am of her) in grabbing PD by the neck and refusing to give in.  From demanding a new neurologist, to doing her own research, to starting her blog and support groups, to getting involved with, and becoming a leader in, the various existing PD organizations, she has shown the strength, endurance, resolve and commitment of a genuine Kryptonian.  It has been something to behold.

Second, a few words about her PD pals.  I have been inspired by watching each and every one of them fight as hard as s/he can to make the best of the hand that s/he has been dealt.  In this regard and to these “lay” eyes, the single most important thing that each of you can do is exercise, exercise, exercise and then . . . exercise some more.  Both body and brain.  It’s not just the high visibility cases, like Jimmy Choi, as marvelous and impressive as he is that have inspired; it is the progress and tenacity of the “regular” PD people.  I have seen TW’s relentless improvement through her various activities (she is literally stronger physically than she has ever been).  I have also seen people join her boxing class at a time when they could not move without a walker progress to vigorous and unaided activity in a matter of a few months.

Now finally, the real reason for writing.  Those of us without an incurable disease can never know – or feel – what that is like to live with one (and those of you with early onset have a particularly heavy cross to bear).  But attitudinally, we must understand that are all suffering, or going to suffer, from the incurable condition of age.  My right knee has been bone-on-bone for years; it will be at replacement level soon but is not quite yet there.  While that day approaches, the left knee got jealous and decided to compete for the world record in arthritis.  Both of them, however, must now get behind the connecting spine, where a combination of stenosis and scoliosis (the latter makes Superman’s “S” look straight) resulted in some micro-something surgery to relieve nerve compression.  And most recently, my right groin (if there is such a thing) broke during the intensely heavy and manly activity of swinging a golf club.

This list is not meant to start either a pity party or a contest in victomology.  It is just a note that each of us has to accept that, as long as we are on THIS side of the sod, something is going to get us. And that it is our duty to deal with whatever that is as best we can, to stay on THIS side of the sod as long as we can, and to be as happy about that as possible.

Screen Shot 2018-12-29 at 9.07.25 AM

When I retired seven years ago, TW was so (legitimately) terrified I would drive her nuts, that to keep me out of the house, she enrolled me in two stand-up comedy classes.  And made me attend.  At the end of the second class we were privileged (required) to do a 5-minute bit in front of an audience at the Comedy Store here in LA.  It was the most terrified  I’ve ever been.  All I could think of was explaining the bitter irony of “growing old.”   I stand behind every word.  Click on the image to view.

 

Other exciting news from Twitchy Woman:  I was interviewed on PDConnect this week.   You can listen to it here.Image result for 2019 happy new year gif

 

 

 

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