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.

 

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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.

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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!

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Blame it on Parkinson’s? Or Not?

 

So many symptoms of Parkinson’s are similar to the aches and pains that come with aging.  Sometimes it is difficult to determine what may be the cause of a new symptom.  So when I started noticing that my depth perception was off a couple of years ago, I blamed it on PD.  Those haloes that started to appear around street lights at night – PD.  And the moon began to bloom, surrounded by what appeared to be petals – PD.   After all, Parkinson’s can cause vision problems such as dry eyes, which I had,

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The moon growing petals!

and blurry or double vision.  The blink reflex can be slowed down, leading to less blinking and dry eyes.  One of the first things one neurologist said to me is that when I entered his office “he saw it in my eyes”, when I asked why, he said that I did not blink enough.

So let’s backtrack to 20 years ago.  I was fortunate enough to have Lasik surgery to correct my vision.  I had been wearing glasses since I was 10, contact lenses since I was 13.  Imagine waking up the morning after surgery and being able to see the alarm clock for the first time in almost 40 years without glasses.  Lasik surgery changed my life and my vision was stable for many years.  So when pesky symptoms such as dry eyes started to become annoying, I assumed I could blame it on Parkinson’s.

Then I started having other problems.  My depth perception seemed off at times.  And for some reason, I no longer needed to use reading glasses.   I liked that, but had no idea why this changed.  About 1 1/2 years ago I went to get my eyes checked to find out what was going on.  My optometrist noticed a cataract forming in my left eye, which accounted for the depth perception problems.  And because my vision was different in each eye, reading became easier.  So I was wrong.  This was not a PD issue.  It was an aging problem.  Everyone eventually developes cataracts, which cloud the lens in your cornea, often distorting everything you see around you.  This accounted for the haloes I was seeing instead of stoplights, and for the flowery moon.

Within 1 1/2 years, cataracts in both eyes progressed faster than we both expected, making night driving almost impossible, even with glasses.  And I kept forgetting to put on my glasses.  After 20 years of not wearing them, I could not get used to wearing glasses again, so I often took them off and then forgot where I put them (many times they were on top of my head).  Kind of like walking into a room and forgetting why you came there.

So to make a long story short, after 1 1/2 years and 3 eyeglass prescription changes later, my optometrist decided that it was time to get rid of the cataracts.  While I was having trouble seeing out, he was having trouble seeing into my eyes.  He then referred me to the same eye surgeon who had done my Lasik surgery.   The interesting thing about Cataract surgery is that it is mandated by Medicare that you must have only one eye done at a time, with a minimum of two weeks in between.  Which means being sedated lightly (not totally asleep) by an anesthesiologist twice within a few weeks. You need to be somewhat awake but relaxed during the first part of the procedure, so that you can watch the psychedelic light show going on in your eye.

In the last few weeks there have been some concerns raised in the Parkinsons community about anesthesia and PD. All I can tell you is that I had no problems with having anesthesia. If you are considering any surgery and have questions about this, I would suggest that you speak to your Movement Disorders Specialist or Neurologist about the pros and cons of having anesthesia with PD.

As for my eyes, I can see again!  And now I can turn those fun purple prescription glasses into fun purple sunglasses.

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How Are Women with Parkinson’s Different than Men?

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The new image of Parkinson’s DIsease

What image comes to mind when you hear someone has Parkinson’s Disease?  I am sure it is not what you would have seen in Houston at the Women and PD TALK National Forum last week.

In a little over 2 years from concept to fruition, the Parkinson’s Foundation’s Women and PD TALK initiative held 10 regional Forums in the past year, and a final National Forum in Houston last week. Three years ago, at the Parkinsons Disease Foundation’s (now Parkinsons Foundation) Women & PD Initiative conference that I was privileged to attend, one of the key take-aways was that there are disparities in research and care between women and men with PD.  To date, there had not been any studies to look seriously at these disparities and we wanted to know what could be done to improve the care and treatment of women with PD.   A year later, Ronnie Todaro, VP at the Foundation who had led the Women & PD Initiative, applied for a PCORI (Patient Centered Outcome Research Institute) grant to help fund Women & PD TALK.

Because the grant required patient involvement, I was honored to be named a co-lead on the project, along with Dr. Allison Willis, Assistant Professor of Neurology, Perelman School of Medicine, University of Pennsylvania.  We worked with Megan Feeney, M.P.H.
Manager, Community Engagement at the Parkinson’s Foundation to put everything in place for this initiative.

There were 10 regional forums, with sites chosen to represent large urban areas as well as more rural areas.  Each  forum leadership team included a Woman with Parkinson’s, a Movement Disorders Specialist or Neurologist and an Allied Health Professional.   About 40 participants, both women with PD and Health Professionals attended each of the full day events.  Breakout groups at the forums gave valuable information on Risk, Symptoms, Treatment and Care.

50 people, about a third of them women with Parkinson’s Disease, gathered in Houston at the National Forum to go over the findings from the 10 forums and begin to set some goals and create recommendations and action plans.  There is too much to report here now, but there will be some specific recommendations to improve the care and treatment of women with Parkinson’s in the final report.

Meeting with such strong women, both people with Parkinson’s and health professionals, makes me proud to be a part of the PD community and inspires and empowers me to do more.      Kelly W

What was most interesting to me is that while there are definitely differences in symptoms and reactions to medications, many of the disparities were more cultural and social.  Just a few examples:

  • There are a significant number of women with PD who are caregivers, taking care of children, elderly parents or sick spouses and there is no one to take care of them.
  • Women tend to go to their doctor’s appointments alone, while men do not.  In fact, women go alone to most things related to PD.
  • Women do not go to support groups as often as men.  Some reported that when they went, they were asked who they were taking care of.  No one believed that they were the one with PD.
  • Being treated dismissively by doctors. Told it was all in their heads, and in many cases, especially for younger women, it was because of hormones.
  • Women need to connect to other women with Parkinson’s. There was a lot of talk about the need for mentors to be paired with the newly diagnosed, to make the disease less frightening and be there for them when needed.
  • Exercise, Exercise, Exercise!!!! We can’t say it enough.
  • And finally, can we get rid of that awful caricature of a man hunched over with PD and replace it with the photo above of 11 amazing women with Parkinson’s?

Thank you  Ronnie, Megan and Dr. Allison for giving me the opportunity to be an integral part of this team.

A full report will be issued, with specific recommendations and strategies to improve the lives of women with Parkinson’s Disease, sometime in the spring of 2019.     I am looking forward to sharing it with you.  In the meantime, click here for the link for the press release about Women and PD TALK.