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Parkinson’s: An Update

Parkinson’s: An Update

 

Dear WinkWorld Readers,

In the past year, I published two WinkWorlds on my journey with Parkinson’s. In the first post, I said that it would also be my last on that topic. Obviously, that plan did not work. My new plan is to publish once or twice a year on this topic, in case it could help even one other person.  I very much appreciate your many positive responses.

For me, Parkinson’s involves a Big Learning Curve

I suspect that I have had Parkinson’s for several years, but it was not officially diagnosed until last March 2024 in Tucson.   At that time, I had also been struggling with a 4-month infection in my toe and too many rounds of antibiotics. I was not doing well, and my attitude was simply that now I would quietly slip into “that still night.”

I returned to the ranch in April and spent about a month researching Parkinson’s.  I learned two things, which helped me immensely:  First, no two cases of Parkinson’s are the same. Each of us has a unique path with the degenerative disease.  Second, exercise is medicine, and the right meds are very helpful. This gave me hope, and I searched for specific guidance online and found many fabulous resources.  (These are cited in the previous two WinkWorlds which are linked at the bottom of this post.) I will add to these online resources in this post also.

A year ago I couldn’t, and now I can…

A year ago I couldn’t write, and now I can.  Not well. Slowly. And, not every day.  But, if I know that I will have to sign my name, at least I now know that I will be able to do it. Losing my cursive handwriting has been one of my biggest challenges.

A year ago I couldn’t type on the computer, and now I can. Slowly.  I have learned to use dictation, which is helpful.  I have only recently noticed that I now often use my fingers to type, and not my dictation program.  Texting on the phone still not possible, but the dictation works fairly well.

A year ago I couldn’t walk well and get around well without a cane or assistance, and now I can.  I now walk two to four miles daily.

A year ago I couldn’t drive well, and now I can. In addition, I had a terrible time getting in and out of vehicles and fastening the seat belts.  Don’t even ask me what it took to get in and out of Wink’s pickup. I had almost totally stopped driving as my arm ached constantly.  I started with acupuncture and within a couple of months, the pain was gone.  I remain pain free, and I am comfortable driving now.  My personal best was a 5-hour trip alone one way in South Dakota.

A year ago I couldn’t get up and down off the floor, now I can.  At PT and my Wellness exercise classes, we have to get down on our tummies, arms spread like Super Man, and then get up to do the next exercise.  Several times in a row. Fast. While simultaneously doing a cognitive task (spelling, orally listing things in a category, etc.)! Turns out that there is greater cognitive benefit for us if we stack 2 or more physical exercises with a cognitive exercise–as opposed to perfecting any one activity. For example, my Wellness instructor (PT person) taped a large circle of blue tape on the floor and told me to walk the circle and stay only on the blue tape.  While she timed me. Then she told me to count backwards by 7’s from 100 while walking the blue line on the floor, and being timed simultaneously.  Tricky.

A year ago I couldn’t take care of myself physically, and now I can.  I had trouble getting in and out of bed alone; getting dressed; and even getting my socks on alone.  Dean, Dawn, and my Tucson friends/neighbors helped me. (Dawn has great stories…)

Cognitive challenges?  I am holding steady on their tests.

My Parkinson’s is unique, but it is clear to me that if I had not done all of these exercises for the last several months, I would no longer be moving much.

Resources

My latest, greatest fav online resource is Rogue in Motion.

I love everything about Rogue, and now I use it as my primary resource.

 

PWR!

Parkinson Wellness Recovery

I am only beginning to learn about this location, but I have heard nothing but good.

 

LSVT

This was one of my first discoveries, and I think it is terrific.

Often referred to as:

LSVT Big and Loud

And/or LSVT Big

 

LSVT Global

LSVT Big Movements on youtube

 

Reposted below:

My first WinkWorld about Parkinson’s

Slide and Glide (or Loud and Proud)
June 21, 2024

My second WinkWorld about Parkinson’s

Boxing or Punching Parkinson’s
September 25, 2024

The next WinkWorld will highlight some of the fun things I have been doing in Tucson—other than my exercises.

February 9, 2025Read More
Atall Christmas Program: A Slice of the Past, Present, and Future

Atall Christmas Program: A Slice of the Past, Present, and Future

Dear WinkWorld Readers,

I have been agonizing as it is becoming clear that I will never get Christmas cards sent this year, but then the Atall (a tiny K-8 school on the SD prairies) kids saved me again! They had their Christmas program, and I realized that capturing this magic event would be the very best holiday greeting I could possibly send to bring joy to each of you. 

Every year when this remote country school has their special program, it always feels like a slice of Americana:  the past, present, and future. In what follows, I share a peak into this world, and I know it will stir fond memories for some readers.

We begin with the invitation which the teacher, Missy, created and shared.  (All I can think:  Just imagine creating and implementing all of this during the last week of school!)

Below, you see the actors lined up for the obligatory photo–oh, those faces!

Here are the actors, acting.

The Past, the Present, and the Future

In the photo below, past students, who  have gone on to high school and beyond, return.  We refer to them as the Atall Alums. The present students are all there with their families.  And, if you look closely, you might be able to find a  couple of future students who are eagerly waiting to have their turn at Atall School.

I saved the best for  the last.  I was not able to be with the students during the program this year, but they found a way to let me know that they were thinking of me, too!

A Greeting from the Classroom

Click on the link below.

classroom greeting

A Greeting from the Past, the Present, the Future

Click on the link below.

video We miss you

How blessed am I to love these kids?  I hope your holidays are restful, fun, safe, and filled with love.

 

 

 

 

 

 

 

December 15, 2024Read More
Magic on the Prairies

Magic on the Prairies

The Magic on the Prairies continues at Atall School.  If you are a consistent reader of WinkWorld, you are aware that I have tried to capture this magic through the years.  The photo above was taken last week, when I visited the school.  For me, it is an absolute joy to spend a day reading with these K-8 students.  The graduates of 8th grade go on to various high schools 15, 20, 25 or more miles in the distance, which means that secondary students board with another family in town, or their ranch families spend early mornings and late nights driving back and forth from ranch to town.

It is not an easy life for students and families, but it is a good life.  The local ranch families value their isolated tiny rural schools, and the community support is deep and wide.  I have now begun to keep my eye on this group of students after they graduate from various high schools.  Students are thriving, and they go on become wonderful citizens.  I cannot find a single exception, since I began writing about the joy of reading with these students many years ago. If you want to read any of the previous WinkWorlds, simply go to the left side bar of joanwink.com and click on SEARCH and write Atall or rural schools.

Last week, I took a selection of Harry Potter books, as I knew most of the younger children probably did not know the stories of Harry, and indeed several of them did not. I wondered if I had made a mistake with my choice of books.  However, as you can see in these photos, the magic of Harry did capture the students. I love this photo of Jessa as she read and brought the pages to life for all of us.

These two photos posted above also show the interest of the students.  On the left, Ellie was inching towards the book to be closer to the action.  On the right, you can see Tymber on the table, too.  How much do I love these two photos?? Not to mention, the two girls!

This is a stack of books which I am reading now.

I am also reading The Rent Collector which illustrates how literacy can change and improve lives–even in the most unlikely places: Cambodia in the book and Atall School in rural Meade County, SD.  Thank you, Annie Hlavka, for sharing the novel with me.  In addition, thank you for helping me to continue to post WinkWorld.

November 19, 2024Read More
Meanwhile Back At The Ranch

Meanwhile Back At The Ranch

Dear WinkWorld Readers,

Through the years, I noticed that many of you enjoy the ranch stories better than anything else I post on WinkWorld. It has been busy! Recently, we spent five long days without any water in the house as the auxiliary pump in our house cistern quit functioning. This of course involves lots of plumbing, a bit of swearing, and trips to town for parts.
I hope you enjoy our recent experience.

Wink after working in the cistern.

Going down into the cistern.

Tools for the project.

Bo and Wink

Success at the end of the day.

October 21, 2024Read More
From Winksomnia to Banned Books

From Winksomnia to Banned Books

Dear WinkWorld Readers,

There I was, minding my own business at 3 am, as I happily read during my “Winksomnia.”  Before going back to bed, I decided to take a quick look at Facebook, and that is when I discovered a lively discussion between two of my friends, Sam and Donna, on a thread I had shared re: banned books. Sam questioned the use of the word, banned, as he could buy them in any book store or order a copy at any moment.  Donna replied  that she thought it referred to books  which are banned in school libraries.

Was it a dream?

I did not give this much thought until the next night when that Facebook discussion popped into my head. I thought it had been a dream, as I know these two people do not know each other.  I checked  my Facebook thread, and sure enough, there they were.  I wrote back to Sam and Donna.*

Sam and Donna, how much do I LOVE this discussion between two of my friends, who I am sure, do not know each other. You are both my friends from totally different contexts! You two have very different lived-experiences and distinct perspectives. By the magic of social media, here you are having a meaningful discussion about something which is very important.
 
Sam, yes, banned does mean that some books are banned in some school libraries. It also refers to isolated school districts where a parent has asked (a.k.a., insisted) that a specific book be “banned” from a class or library. I have studied this a bit, and it often is a parent who has not read the book, but has a political motive.
 
I suspect that the large book stores and small independent book stores have researched each “banned” book before setting it out on that table.
 
Sam, the bottom line for me is that I am happy that each of the three of us can access any book, anytime.
 
However, that is simply not true for some students–particularly students of poverty. Libraries and schools can often be their only avenue to free-range reading. If a book is denied from even one student, I am comfortable calling it a “banned” book.
 
The research question is starting to form in my head: What criteria does Book Store A use to label a book “banned?”
 
Big Hugs to both of you. Thanks for thinking with me.
Banned books interest me greatly, but it sure is not my area of serious research.  However, I have noticed that whenever I comment on banned books, a few of my Facebook friends ask me questions which reveal their doubt and distrust of my comments. Because of this, I have consistently checked online, whenever I see specific banned books.  I always want to know who banned it? Where? When? Why? It has never been difficult to find answers to these questions, and it is always more discouraging than I had ever realized.
 
Granted, it is only anecdotal data, but I am sure that by posting this WinkWorld, we will hear from serious scholars who have researched this carefully for years.
 
A teacher/friend mentioned the following experience.
I found out recently that the superintendent from a school banned “Where the Crawdads Sing.” No explanation.
This one anecdote is very reflective what my searches of specific books revealed to me also.
 

My First Experience

I remember vividly my first experience with a book banning.  It took place in the 70s, when Dawn was already an avid reader in 3rd grade.  She walked into the school library and wanted to read three books, which were placed on a shelf for 5th grade readers.  The school librarian would not allow her to check out any book, which was not on the 3rd grade shelf. The librarian’s rationale was that Dawn would have no books  to read when she got to 5th grade. 

Later in the hour, Dawn grabbed the three books from the 5th grade shelf and shoved them up under the front of her t-shirt.  Busted! The librarian saw her and gave her after-school detention, which meant Bo and I also had after-school detention, as I was her transportation back to the ranch that night.

That is the moment when I first stared to think about banning books. Who does it? Why? And, what is a 3rd-grade reading level? Who decides?

Another experience came when Bo was in 5th or 6th grade and went from reading about motor bikes to reading Stephen King novels. I remember a fleeting thought that Bo might not understand a King novel, and I am sure he didn’t, but he was captivated.

As a classroom teacher and professor, I have heard so many unsolicited examples of books being banned in various places.

WinkWorld Readers, I look forward to hearing your experiences with banned books.

 

*All names are fictional, but the people are very real, and they are very real friends of mine from different chapters of my long life.

October 12, 2024Read More
Boxing, or Punching Parkinson’s

Boxing, or Punching Parkinson’s

Dear WinkWorld Readers,

I realize that I previously wrote that I would not mention Parkinson’s again in WinkWorld, but your many positive responses made me reconsider. The bottom line is that I am so much better than even 4 months ago, and I  credit that to a balance of meds and my daily exercises, which are  reposted at the end of this blog post.

So, now I am in a boxing class, much to my amazement.  This is not the type of boxing where I hit someone, or  someone hits me.  This is all about strength and balance in the Wellness Center in the medical facility.  A few photos follow.

 

I like that pix, as you can see that I actually hit the boxing bag.

This heavy bag is easier to hit, but it barely moves when I hit it.  Wink says I should “hit it like I mean it.”

We often have to get down on our tummies and get back up in very specific ways–while they time us. Please note my new red boxing gloves.

But the emphasis is always on our balance.  Here I am trying hard to stand on water without falling against that cupboard behind me.

This photo is just for your entertainment. Those gray things I am supposed to stand on are filled with water.  It is a lot like trying to maintain your balance on water-filled big balloons.

Over and out for now.

Your friend,

Slugger

The exercises which I use on all posted below from a previous WinkWorld.

Slide and Glide (or, Loud and Proud)

September 25, 2024Read More
“to ache with caring,” Mem and Missy

“to ache with caring,” Mem and Missy

Dear WinkWorld Readers,

When I read “to ache with caring” (Mem Fox, p. 22) in 1993 in a book about teaching, learning, and living, I was gob-smacked*. Finally, someone understood how I felt.  I immediately took the book to a class on English language arts, which I was teaching at California State University, Stanislaus, and the teachers and I began our love affair with all of the work of dear Mem.

 The picture below is my original book.

Immediately, the teachers in my class encouraged me to communicate with Mem Fox, but I did not know her, and she lives in Australia. On a whim I sent a fax, which initiated a treasured communication known to all of us as FoxFax and WinkLinks.  When she initially responded to us, we were thrilled, and I have kept that treasured piece of paper all of these years. Please note the date (October 31, 1993).

Recently, I have taken a surprise trip down memory lane with my Mem books. Several months ago I told this story to a dear teacher friend, Missy Urbaniak of Atall school featured in my Prairie Pedagogy series.  I also passed on my Radical Reflections book and all of my treasured, faded paper fax from Mem. I was confident that my memories of Mem would live on safely with Missy. At that point, I forgot about giving her the book.

 However, that is not the end of this story.

Recently, Missy arrived for a visit, and she brought a gift for me. As my multiple copies of FoxFax are deteriorating fast, she typed up our early correspondence and put them in the correct chronological order. I was so overcome with joy and honor.

Below are photos of some of the barely-legible FoxFax we received from Mem and the newly-typed beautiful WORD doc copies, which Missy prepared.

 

 

 

 

 

 

 

 

I treasure what Missy did and, of course, she will now be the recipient of all of my “Mem books.”

Many of you may be familiar with Mem’s books for  children. It is hard to choose my favorite, but maybe

Kaola Lou or maybe Possum Magic.

This week at Atall School, I get to read, Whoever You Are, so that may be my new favorite. Here is Mem as she reads her story.

Mem Fox NEW website: Fabulous.

Welcome to the new website!

A previous post on WinkWorld about Mem’s writing. (click below)

Russ on Reading: Mem Fox

 

*gob-smacked – In my long academic career, that is the first time I ever needed that word….

I feel compelled to mention my previous blog post on Parkinson’s. Thank you so much for your heartfelt responses. A batch of your comments landed in a mysterious folder in WordPress for several weeks. It took the sleuthing of dear Annie Hlavka to find them for me. Thank you! Based on your responses, I may have to reconsider my comments about never writing about Parkinson’s again.

My next WinkWorld will feature my reflections on the many valuable contributions made by Jim Cummins.

 

August 23, 2024Read More
Slide and Glide (or, Loud and Proud)

Slide and Glide (or, Loud and Proud)

Dear WinkWorld Readers,

If you are a reader of WinkWorld, you know a majority of my work relates to languages and literacies with a heavy dose of Prairie Pedagogy in the last 10 to 15 years. But I always try to write about what interests me. Lately, I have been more interested in Slide and Glide or Loud and Proud. We made up those terms to describe the exercises which are very much the antithesis of what my body wants to do naturally.

As some of you know, I have a hereditary condition called Essential Tremors. I have known for years that I would get it. It does not change my life much. However, this winter I was also diagnosed with Parkinson’s. At that time, my movements had become very stiff, slow, and rigid. Then I learned about these very strange and even funky exercises which are designed primarily for Parkinson’s patients. I absolutely love doing them, and I am honestly somewhat of a convert.

I have two vices: reading and walking.

However this winter, I was not able to get out to walk. I felt like a caged lion. Now, I am up to 2 miles again. I find these exercises amazingly effective. If only one other person benefits from this post, it is worth it for me.

In this WinkWorld, I want to share some of what I have learned. I will primarily focus on the exercise websites that have been beneficial for me. So far, I have learned that I have much to learn about all of this. I know I am just at the beginning of my learning curve.

The reason I use the terms, Slide and Glide or Loud and Proud is because I do not want to infringe on any other websites’ trademark name. All of these exercises focus on large movements, not small; and fast movements, not slow; and smooth movements, not rigid; and loud voice exercises, not quiet; The exercises make my body do the opposite of what it wants to do.

Before you glance at these exercises, you might want to read this very short story from my last post on WinkWorld.

On to 100

Exercise Websites

Of course, the gold standard for all information about Parkinson’s is Michael J. Fox.

Another very good site which I use is….

Move and Shout: Power for Parkinson’s

A third site which I often use comes from Power for Parkinson’s. I find it very helpful.

 

Aerobic Exercises for Parkinson’s

A fourth site that I use is Aerobic Exercises for Parkinson’s.

 

Hand Exercises for Parkinson’s

A fifth site I use is specifically for hands, which become very rigid with Parkinson’s.

A final interesting concept I learned is the VILIM ball. It is an electronic ball that you hold in your hand to reduce the tremors.  I have two, and I love them.  I have also heard about vibrating wrist bracelets.

Dear WinkWorld Readers, I do not plan to write more about Parkinson’s. I will continue to write about what is lying around on my desk and on my computer desktop.

How do I do WinkWorld if I have Parkinson’s? Very slowly, and with the help of a dictation program and two friends: Susan Henley Spreitzer and Annie Hlavka. Thank you to both of them. How much longer can I publish WinkWorld? I don’t know.

 

June 21, 2024Read More
On to 100

On to 100

Dear WinkWorld Readers,

A very short and personal blog post follows.

In church recently I had a very interesting conversation with a five-year-old, who was seated in the pew directly behind me. We were nose-to-nose as we whispered. He looked at me and said, “Good morning.”
“Good morning,” I replied.
“How old are you?” he seriously asked.
“80,” I quietly replied. “How old are you?”
“Five,” he told me. That was the end of the conversation, until after the church service when he came up to me again.
“You are a bunch older than I am,” he explained matter-of-factly.
“Yes,” I said.
“You are 75 years older than I am,” he clarified for me.

Remember, he is 5-years-old and not yet in kindergarten.

After church was over, he walked with me down the stairs of the basement to have cookies and treats. When we got to the bottom of the stairs, he looked up at me and said, “I think you will live until 100.”

I tell the story for two reasons: first, it is a precious story, and I want to maintain the memory. Second, I want to use it as a springboard for thanking so many of you who wrote to me and shared specific memories for my 80th birthday. You have no idea how much I enjoyed each and every memory. It took me about two months to get my thank you notes and texts written, because I focused on each of you and our shared time together. This required a lot of time, staring out the window and shedding quiet tears of happiness.

Thank you from the bottom of my heart. And thank you, Dawn, for collecting and organizing so much of this. It was the perfect gift.

And, now: On to 100.

I found this photo on the web. It is not the little guy in the story. It’s just meant to give you a smile.

May 21, 2024Read More
I Should Have Been a Teacher

I Should Have Been a Teacher

I should have been a teacher…she said with tongue firmly planted in her cheek…. However, dear WinkWorld Readers, this is exactly how  I felt when leaving another wonderful visit to Atall School on a stormy, windy, wet May  5. 

The sky as I was leaving Atall.

The purpose of my trip was to help the students celebrate Cinco de Mayo. Of course, I used my Spanish and tried to make it interesting and fun for the students. Missy, the classroom teacher, and I shared stories about the geography, history, and language of Cinco de Mayo. For those of you who may be new to WinkWorld, and there are a handful of you this month, Atall is a tiny school on the very isolated prairies of South Dakota. I have been documenting my experiences there for many years, and these blog posts are all available to you by using the search bar (over on the left of my homepage) and typing in Prairie Pedagogy or Atall School.

A highlight of this day for me happened when I was putting on my jacket and preparing to leave. I felt a little hand tugging on my shirt. A little guy said to me, “You said you didn’t have to leave until 11:30, and look at the clock, it is only 11:20.”  Only one thing to do in that case: I took off my jacket and stayed 10 more minutes. Happily.

 The following photo is the entire school/K8, the teacher, Missy, and all the students with me at the table. Oh, how I love these kids.

 Each of the students had to take turns trying on the sombrero and a poncho as we celebrated.

 

 

 

 

In this photo, the boys are explaining to me one of their science projects: how to make concrete. It was fascinating.

Wouldn’t we love to hear what these two girls are sharing? However, I actually think they were talking about germinating different types of seeds, another science projects.

 

As most of you know, my blog is primarily focused on language acquisition and literacy ideas for teachers to take and use in their own context. My only purpose is to share materials. However, I have noticed that I’ve begun to expand my sharing on WinkWorld. I think this is what happens when one turns 80. I notice in my queue of upcoming blogs, I have draft on mentoring/Bobcats, another on a pedagogy box (I am madly searching for a former CSU teacher education student, named Heidi), and a third draft on Loud and Proud.

 

 

 

 

 

May 11, 2024Read More