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 

Weighing in on Weighted Blankets

Several months ago, my daughter suggested that I try a weighted blanket to help me sleep.  At the time, I had never heard of weighted blankets.  Today, they seem to be everywhere, claiming to cure all that ails us.

Weighted blankets were originally used as a calming mechanism for children with autism, ADHD and other sensory disorders.  Anyone who has a newborn has seen the calming effect of a swaddle when putting the baby to sleep.  “ThunderShirts”  for pets (weighted vests) help keep them from going bonkers during thunderstorms and fireworks.  We like to be cuddled, so what could be better for sleep than the cuddling effects of a weighted blanket.  Even on the hottest nights, many of us still need the weight of a blanket on top to help us sleep.

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Last year, the concept took off, with kickstarter campaigns and word of mouth on social media.  These blankets are everywhere.  So when at Bed Bath and Beyond last month, I saw a display of weighted blankets, I decided it was time to check them out.  Armed with my 20% off coupon, I bought a Nap blanket made by Brookstone.  I was not familiar with the other two blankets they had on display, so checked out reviews on my phone before deciding which one to buy.

One caveat, if you have not been lifting weights, ask someone to help you.  These blankets are heavy, as advertised, ranging from 10lbs to 25 lbs.  Most are filled with glass beads or pellets to make them heavier.  It is recommended that you get a blanket no more than 10% of your bodyweight, so I bought a blanket based on weight, not size.  Since we have a king sized bed, this blanket was not quite wide enought for both of us to use at the same time.  It became clear that we needed a second blanket. One question I have is:  do we want a blanket that is larger and 10% of our combined weight to share?  I could not find the answer to that question.   For more information on buying weighted blankets, check out this article from the Washington Post.

After a couple of nights with our new blanket, I noticed that I was definitely sleeping better, although not necessarily longer.  I was falling asleep almost immediately and was not waking up as often during the night.  I also seemed to be dreaming more, meaning that I was getting more good REM sleep.

Since we seemed to be fighting for the too small blanket, it was time to get a second one.  So after much more research on the internet, I settled on a slightly larger, heavier   BABO Weighted Blanket.    I liked this one immediately.

The glass beads inside were small and distributed evenly, so it did not have the lumpy feeling of the Brookstone blanket.  One side of the duvet cover is warmer for winter, the other side is made from bamboo, so it is supposed to be cooler for summer. This blanket is more expensive, but definitely seems worth it so far.

Remember how cozy it was as a kid to be covered by a pile of blankets?  Think of the weighted blanket as the new version of this, with some added weight.  Sounds good to me!

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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