What helps you to live well with Parkinson’s Disease?

You must do the things you think you cannot do. – Eleanor Roosevelt

Since March is Women’s History Month, I will be including some quotes from some amazing women who have made a difference.  Look for more scattered throughout the blog posts this month.

And speaking of women,  I submitted an abstract to the World Parkinson’s Congress about a survey that I posted on a women’s Parkinson’s Disease Facebook group.  My abstract was accepted and I will be showing the results on a poster in the Poster Display  during the conference.

As a blogger who writes about living well with Parkinson’s, and having been a co-lead on the Parkinson’s Foundation’s groundbreaking study on women with PD last year, Women & PD TALK*, I was curious about what other women with Parkinson’s think contributes to their continuing to live well with Parkinson’s.

I asked the following questions  in November, 2018.

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

I now want to open the survey to anyone who is interested in participating.  The difference is that this time I am asking you to choose 3 things from the list of the most common responses that I received last time.  And of course, there will be room for additional comments at the end.

This survey will self destruct, in about 10 days so that I will have time to look at the results and write a summary and create a poster for the WPC which starts on June 4.  Being the Parkie that I am, I need the pressure to get this done.   So please respond quickly so that I don’t have to scramble like Cinderella to get to the ball!

Be kind, have courage and always believe in a little magic.
― Cinderella

And the survey says……..click here to participate

 

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  • Watch for the Women & PD TALK outcomes here in the next few weeks!

Saying goodbye to Man’s (Twitchy Woman’s) Best Friend

 

We said goodbye to our dog Lucy this morning.  This is the fourth dog that we have lost, and it never gets any easier to say goodbye.  As a friend said to me, dog’s are God’s joke on men.  They are man’s best friend, but their lives are way too short.

From the start, she was my dog.  Lucy was a rescue that we adopted 14 years ago as a puppy.  Apparently she had been abused by a man before we found her, because of her reaction to my husband and other men.  She just did not like men, especially tall men.   She was afraid of them, barked at them, occasionally snapped at them, especially my son-in-law when he visited from Chicago.  There would be a point in every visit, where he would be standing still and she would go for his ankles, just to let him know she did not approve.  Lucy quickly got the nickname of Lucifer.

Rescue dogs can be complicated.  You don’t know how they were treated before they came to you, which can make the transition difficult.  Some are so grateful that they are in a warm, loving family, that they can’t do enough for you.  Others, like Lucy,  have fears from being treated poorly or even abused.  It takes them a long time to acclimate.   Lucy bonded to me immediately, but had a complicated relationship with Mr. Twitchy.   She wasn’t so sure she could trust him, so their relationship was rocky from the start.  So much so, that Lucy had her 5 minutes of fame on a friend’s national radio talk show, where he talked about Lucy not liking Mr. Twitchy, but loved me.  Not once, but TWICE, she was the topic of conversation on his show.

Lucy was always meant to be my dog.
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Lucy, 6 months old

My kids decided that I needed a dog because I was home alone so much.  Mr. Twitchy was commuting between LA and Chicago for work, our kids were all living out of town at that time, and our golden retriever, Rusty, had died a couple of years earlier.  I had also begun having health issues at that time.  My oldest daughter started searching on Pet Finders and sent me photos, lots of photos.   She sent this one and it was love at first sight, for me anyway.  That pink nose was the clincher.

Through the years, she was a source of comfort for me as my health issues continued.  She would curl up beside me on the sofa when I was not feeling well.  And she forced me to get up and take her for walks on the days when I didn’t want to get out of bed.  For anyone with Parkinson’s or any other chronic disease, walking a dog regularly is good exercise, even if they go slowly and stop at every bush or tree.  It won’t count as cardio exercise, but it benefits you in other ways.  Most of all walking your dog combats isolation and gets you moving.  After all, dogs are magnets for other dogs, so the walk becomes a social outing, for your dog, and for you since you can’t ignore the other people walking their dogs.

I loved walking Lucy in the early mornings.  For years, she had me up at 5-5:30 am to go out.  It was so quiet and peaceful at that time of day.    In the winter, we would watch the the last stars fade and the sun rise, sometimes getting spectacular photos of clouds bursting with color just before dawn.  In the summer,  everything was quiet, except for the chirping birds.  It was our time alone with each other before everyone else woke up and the phones started ringing.  We both loved having that time of day together.

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At the beach on Thanksgiving

We will miss Lucy, but will have the memories.  And as my almost 4 year old grandson said, Lucy will go to the happy place on the Rainbow Bridge* and wait for us along with Penny, Rusty and Layla, to join her later. 🐾🐾

 

 

 

 

*The Rainbow Bridge (Author Unknown)

There is a bridge connecting Heaven and Earth.
It is called the Rainbow Bridge because of all its beautiful colors.
Just this side of the Rainbow Bridge there is a land of meadows,
hills and valleys with lush green grass.
When a beloved pet dies, the pet goes to this place.
There is always food and water and warm spring weather.
The old and frail animals are young again.
Those who were sick, hurt or in pain are made whole again.
There is only one thing missing,
they are not with their special person who loved them so much on earth.
So each day they run and play until the day comes
when one suddenly stops playing and looks up!
The nose twitches! The ears are up!
The eyes are staring and this one runs from the group!
You have been seen and when you and your special friend meet,
you take him in your arms and hug him.
He licks and kisses your face again and again –
and you look once more into the eyes of your best friend and trusting
pet.
Then you cross the Rainbow Bridge together never again to be apart.

 

Fighting Parkinson’s Every Day

I used to say I knew people in show business, now I say I know people with Parkinson’s. Barry Blaustein

 

UNADJUSTEDNONRAW_thumb_756fBarry Blaustein joined our boxing class a couple of years ago, not long after he was diagnosed with Parkinson’s Disease.  It was clear from the outset that Barry is a fighter, in so many ways.  With flowing white hair and a big smile, he attacked the heavy bags with glee.  His strength and skill on the heavy bags impressed everyone in our little group.  Barry fit right in immediately.

His story, like so many of ours, takes a circuitous route.   Barry lost his sense of smell 7-8 years ago.  Then began dragging his feet.  His voice was getting lower and he just seemed sluggish.   He did not know that these were symptoms of Parkinson’s.  First, Barry saw his regular doctor, who dismissed his symptoms and said that he did not have Parkinson’s.

The symptoms persisted, so Barry made an appointment with a Neurologist at Cedars Sinai in Los Angeles.  The doctor there put him through the routine for diagnosing PD, walk down the hallway, open and close  your fingers, tap your foot, etc. and quickly confirmed that Barry did have Parkinson’s.  Since no one else in his family had PD, this was a surprise.  As Barry says, he is the pioneer in his family.

The doctor recommended that he exercise 30-35 minutes a day. Barry’s fiancee  looked up classes on the internet and found boxing classes for PD (StoPD).  He took boxing lessons when he was younger and knew he had fun doing it, so decided to give it a try.  Barry also walks 30-40 minutes or bikes, and goes to Pilates a couple days a week.  He usually exercises 7 days a week,  but occasionally takes a day off.  However he has recently developed sciatica,  which Barry says is much worse than Parkinson’s.

“People with Parkinson’s are fighters”

He asked his doctor once why he chose to treat Parkinson’s, the doctor said “People with Parkinson’s are fighters”.   Barry agrees.  “We don’t sit back and do nothing.  I didn’t do anything to get Parkinson’s (unlike many other diseases) If I had cancer and  smoked cigarettes, I would say I shouldn’t have smoked.  If I had heart problems or a heart attack, maybe I should have lost some weight.  But I didn’t do anything to cause PD.”

He is fortunate that he gets more sleep, unlike many others with PD.   Melatonin works for him and helps him to sleep better.  Otherwise, he takes Sinimet (Levadopa/Carbidopa) only. His tremor has gotten a little worse, but he notices it more than other people.  He also gets more tired,  but that could be from getting older.  His handwriting, which was always terrible, has gotten really bad.  Now he says  “I will write stuff and then will look at it and think, what the heck was I doing”.  Usually he types and if he starts to shake, he will stop and exaggerate the shake and shake it off.

Having Parkinson’s doesn’t really affect his work.   After a long career as a film writer and director, he turned to teaching screen writing at a local university.  For the last 7 years, he has been primarily a college professor.  He tells his students he has PD, always making the same speech at the beginning of a semester:  “I have Parkinson’s so if you see me shake, that’s a tremor from Parkinson’s, so don’t worry about it. If my voice gets low, just tell me to raise my voice, if I say anything really mean to you, that’s not the Parkinson’s, its exactly how I feel about you.  They all laugh.”  He approaches it with humor which puts them at ease.

Recently, he went back to writing scripts and along with his writing partner David Sheffield, he just wrote a new movie for Paramount:  COMING 2 AMERICA,  a sequel to COMING TO AMERICA, that the two of them wrote 30 years ago.   “They didn’t know it was being written by a guy who has Parkinsons”

This past year, Barry has gotten involved with the Parkinson’s community.   Last fall, he was a speaker at the Parkinson’s Foundation Walk in Los Angeles. He had participated in a few walks before and his daughter got very active with the Parkinson’s Foundation as a result.  She created some background materials about Barry to send to them.  After meeting with with Barry, they asked if he would be interested in speaking publicly for them.  He went to a workshop a couple of weeks ago and was asked to become a spokesperson for the Foundation.   He will be going to speak around the country, do some PSA’s (Public service announcements) and other things.  As he says, he is the new “Jerry’s Kid”.  He used to say, “I knew people in show business, now I say I know people with Parkinson’s.”

What does the future look like for him?  So far he has made no major changes in his life,  but knows he will eventually have to consider making a move because he lives upstairs in a duplex, and the stairs can become a problem.   He is looking forward to speaking on behalf of the Parkinson’s Foundation, and becoming more involved with the Parkinson’s community.

I asked if knowing People with Parkinson’s has changed his life.  He went to a support group once but didn’t find it all that helpful.  He said that too often, people are just griping.  However, Barry said the people in the boxing class are very brave. “I wish our boxing group got together every once in awhile and talked about our lives.  We are more than just our disease.”   What a great idea!  Let’s make it happen.

boxing-gloves

Did the Weighted Blanket Work for Me???

Last month, I wrote about weighted blankets for improving sleep.  After using a weighted blanket for more than a month, I think it is actually helping me sleep.  I am falling asleep faster, getting up fewer times at night, and usually going right back to sleep.  I am even sleeping later in the morning, which is terrific.  I think the daytime fatigue has even improved.

If you want to try a weighted blanket, I would suggest that you check out the reviews,

© Charles M Schulz

and get the best blanket that you can afford.  I bought two different blankets and there is a very big difference between the two.  The better blanket is on my bed.  I keep the other in my family room to cuddle up in while reading or watching tv, and to use on those few nights (which are increasingly fewer) when I cannot get back to sleep in the middle of the night.

Don’t want to lay out the money?  Pile a bunch of blankets on your bed to get some extra weight and see if it helps.  Now, while it is still winter and cooler at night.  When it is hot at night during the summer, this could be a problem for you.  IF the extra weight helps, then consider getting a weighted blanket for summer, which may not be as hot for you.  I don’t know about the rest of you, but I cannot sleep with just a sheet during the summer, no matter how warm it is.  I still need the extra weight of a blanket or comforter. Cocooning really works, which is the theory behind the weighted blankets.

So how do you choose?  Look at the ratings and comments on the blankets on Amazon or other websites.  Here are a few of the higher rated blankets:   Quility Premium Adult Weighted Blanket & Removable Cover (this is the one I like), YnM Weighted Blanket,  ZonLi Weighted Blanket.

For information on how to buy a weighted blanket, go to my post from January 22, Weighing in on Weighted Blankets.  Let me know if a weighted blanket works for you.

 

An interesting new tech device for Gait Freezing

I just saw this on another site:

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Researchers in Scotland have developed a novel wearable electronic device worn around the waist, called ‘cueStim’, designed to prevent or relieve freezing of gait, commonly described by peoplewith Parkinson’s, as a feeling as if their feet are stuck or glued to the floor preventing them from moving forward.  For more information click here.

Is There a Coming Pandemic of Parkinson’s?

pan·dem·ic\/panˈdemik/ adjective: occurring over a wide geographic area and affecting an exceptionally high proportion of the population  “The 1918 flu was pandemic and claimed millions of lives.”   noun: an outbreak of a disease that occurs over a wide geographic area and affects an exceptionally high proportion of the population: “a pandemic outbreak of a disease”

The alarm that there could be a “pandemic” of PD was sounded last week in a report in the Journal of Parkinson’s Disease, “The Emerging Evidence of the Parkinson Pandemic”  by E. Ray Dorsey, Todd Sherer, Michael S. Okun and Bastiaan R. Bloem. (Mr. Twitchy, always on the lookout for Parkinson’s news, ran across the study today and sent me several articles today based on this report.)

 

Screen Shot 2019-02-07 at 2.39.35 PMThe authors* are all highly respected researchers in the Parkinson’s world.  They have been following the growth of Parkinson’s Disease since 1990.  From 1990 – 2014, the number of people with Parkinson’s Disease worldwide doubled to over 6 million.  The authors predict that those numbers will double again to 12 million by 2040,  They say that “The Parkinson pandemic is fueled by aging populations, increasing longevity, declining smoking rates, and the by-products of industrialization.”
Yes, the population is aging.  Life expectancy has increased by 6 years in the last 2 decades and will most likely continue to increase, putting more people at risk for PD after age 65.  The impact on our health system and support systems will be enormous as the number of people with advanced PD increases.
Declining smoking rates???  Many studies over the years have shown that smoking decreases the risk of PD by about 40%.  As smoking rates decline, there could be an increase in PD.  However, if you are not a smoker, please don’t consider starting just to reduce your PD risk.
The “by-products of industrialization” include pesticides, solvents and heavy metals. However, they emphasize that exposure to these agents is preventable in the workplace. The big question is, how many employers will take the necessary steps to protect their workers from being exposed.  This is definitely a cause of PD that can be reduced.
But the news is by no means all doom and gloom.  Quite to the contrary.  According to two articles, one from Science Alert and another from Eureka Alert, researchers are getting closer to finding what actually causes Parkinson’s, and many new treatments for PD are being approved every year.  We may not have a cure for a while, but we are getting closer to slowing down the progression of PD to make our lives much better.
Against that background, the Dr. Dorsey proposed that the Parkinson’s community form a “PACT” to Prevent, Advocate for, Care, and Treat the disease through understanding the root causes (environmental, genetic, and biological), expanding new care models that seek to bring expert care to all, and developing new highly effective therapies.  They point out that, the most effective therapy we have today (levodopa) is now fifty years old. It is time for something new.  Now.
Pandemics in the past, such as — polio, breast cancer and HIV are a fewe recent examples — have been reduced successfully and substantially because of activism coming from the community.  We can both prevent potential the PD pandemic and help those who already have it by supporting research, participating in clinical trials for new treatments, and raising awareness about Parkinson’s.  The key, the authors say, is that we all work together to accomplish this goal.

*E. Ray Dorsey, Department of Neurology and Center for Health+Technology, University of Rochester Medical Center, Rochester, NY, USA.      Todd Sherer, Michael J. Fox Foundation for Parkinson’s Research, New York, NY, USA.       Michael S. Okun, Fixel Center for Neurological Diseases, Program for Movement Disorders and Neurorestoration, Department of Neurology, University of Florida, Gainesville, FL, USA.   Bastiaan R. Bloem, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Nijmegen, The Netherlands.