Parkinson's Awareness

A Parkinson's organization we haven't worked with contacted us last month (April is Parkinson's Awareness Month) and asked us to post on social media to help raise awareness of the disease and ask for monetary contributions to the organization.

We have actively supported a few movement disorder organizations during the 19 years of our glorious marriage, never knowing one day we would be dependent upoon a couple of them. I hope one day to be able to create new snowflake patterns for a new PDF booklet to raise money for organizations such as the Michael J. Fox Foundation and the Davis Phinney Foundation. Right now though, I'm struggling to keep my head above the pool of salt water tears, so that particular dream is on temporary hold.

The organization we had not heard of until they contacted us provided a template for a social media post. (Actually, they provided four templates for different roles: patient, caregiver, bereaved family member and health professional.) At the time, I thought it might be a good idea to share our story to help raise awareness. Not to raise money, but to help people understand what it's like to live with this disease. I saved the email and wrote a lengthy blog post I have not yet published because I'm not sure I want to reveal everything I wrote.

Now I'm cleaning out my email, and I came across the templates again. I had to do some major rewriting (that alone made me wonder if perhaps I should volunteer my writing and editorial services to the organization in question). I still haven't quite decided if I should actually publish this because it wasn't structured well, it didn't flow smoothly, and I can do a much better job on my own without the use of a template. I decided to go ahead and fill in the blanks on the (rewritten) template below so I can delete the email. The italics are where I replaced the name of the organization we'd not worked with. If you are reading this blog post, that means I finally hit the orange publish button. Probably during a writer's cramp moment. Or following yet another sleepless night.

Five years ago, my precious husband was diagnosed with Parkinson's. I am now one of nearly 40 million caregivers across the United States.

Living with Parkinson's is like living with a hungry thief who robs us daily of nuggets of life, passion, and sanity, slowly devouring us, piece by piece, day by day. The loss never stops. It just keeps getting worse. Lizard has endured the loss of almost everything he loves, his independence, his ability to think clearly, his balance, his ability to sleep, and now, his grasp on reality. Currently, there is no cure for Parkinson's.

The hardest part of being a caregiver is knowing there is nothing I can do to make it better. There is nothing I can do to relieve his symptoms. There is nothing I can do anymore to slow the progression of this vicious disease. The number of people living with movement disorders is skyrocketing.

Our neurologist, endocrinologist, ophthalmologist and general practitioner have been a lifeline for us. Our family and friends who understand what this brutal disease does help us get through daily disappointments, surprises and challenges. The Michael J. Fox Foundation and the Davis Phinney Foundation (and many other Parkinson's organizations) provide Zoom seminars and gab sessions, as well as YouTube videos, we can turn to for support or when we suddenly are faced with a new symptom and don't know how to keep going.

All of our friends, loved ones and health professionals walk alongside us because we have been so deeply impacted by this disease. Although Parkinson's feels isolating and debilitating, we are surviving with their help, and we are so grateful for their love and support.

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National Pen Pal Day

a treasured gift from a newer pen pal

How many people now, in this day of modern technology, still have pen pals? How many people younger than me even know what a pen pal is???

my favorite childhood letter-writing tools

Kristia and I met in a hotel swimming pool in 1970. She'll be the first to tell anyone she saved my life. :) My siblings and I were watching some older kids do somersaults over the pool divider, and I decided I could do it, too. After all, I was an aspiring gymnast. I did somersaults over the bar at school every single day!

this character is more graceful than I was

Water, however, has a different gravitational effect on twirling than air. Back in the days of pants on boys and dresses on girls in grade school, the biggest worry I had doing somersaults on the playground bar was making sure I wore "bloomers" beneath my dress (because shorts were not allowed in school back then).

my favorite hotel swimming pool is in Moab

I lost my bearings when I went under the water. I didn't know how to swim and was, in fact, terrified of deep water. I've always thought I must have fallen in a pool when I was very, very young because I've been afraid of deep water as long as I can remember. I panicked, and Kristia, a year younger than me and an expert swimmer, wasted no time rescuing me. We've been pen pals ever since.

Back then, postage stamps cost six cents. I remember finding a nickel in the street every now and then while walking my baby sister in her stroller around the block. I'd walk to the post office next chance I got to buy a stamp. I'd save my babysitting money to buy fancy unicorn stationary. I looked forward to Kristia's cards and letters in the mail every month, and sometimes more often, depending upon how often we could afford to write.

We were best friends from a distance through our education, dating, hobbies, jobs, marriages, child-reading, traumas, heartaches, celebrations and dreams. Every time I go through an old box of correspondence in the basement, I find another treasured letter or card from Kristia. She tells me she hangs my cards (which have my photography) all around her house so she can look at them often. I save all my Christmas cards every year; but the Hawaiian Christmas cards Kristia sends each year... Always one of a kind and always good for an awesome belly laugh!

Kristia's parents lived in New Mexico and Colorado. Kristia spent a good many years right here, in my current digs, as well as in my younger stomping grounds. You'd think that might have given us multiple opportunities to get together again.

Colorado is my home, but I LOVE New Mexico!

Alas, we had only one other in-person meeting. Kristia permanently moved to Hawaii upon her high school graduation. Albuquerque was not on my routine trip map when I visited relatives in Salt Lake. I detoured that year specifically to visit Kristia when she was visiting her parents with her new little daughter. Now Stevie is grown and married with a baby of her own! This visit was back in the day before everyone had cell phones with cameras. Back in the day before anyone had cell phones! Even though I carried my camera with me everywhere even then, I have no photos of us together. NONE.

We had planned to celebrate our 50-year golden friendship anniverary with Lizard and I making the awesome journey to Hawaii. What a celebration that would have been for all of us! Lizard's unexpected Parkinson's diagnosis and 2020 in general changed our plans.

49 years of pen pal friendship

I'm still holding out hope of one day being able to take Lizard to Hawaii. Lizard deserves one more trip of a lifetime. And Kristia and I deserve to be able to enjoy each other's company in person again one day. I still am not a very good swimmer at all. Perhaps we could even reinact our first meeting. Ha ha. In the ocean!!!

some dreams never die

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Endings

I just finished reading the "goodbye" post from Fat Cyclist, which Elden actually wrote four months ago. I feel as if a part of my life has disappeared.

I've actually felt as if a HUGE part of my life disappeared since Lizard's Parkinson's diagnosis back in August of 2018. I occasionally catch myself in a puddle of self-pity because of what my life has become. We have pretty much become primarily home bodies; we don't get out, and it's not because of any pandemic. When I begin to feel that way, I remind myself what Lizard must feel about his life. That quickly mops up any tears of selfdom threatening to fall from my eyes.

But that's off-topic. The end of a beloved blog I love is a hard pill to swallow. Crazy Mom Quilts was a cherished hang-out, and I'm not sure there is another quilting blog that has come close to the following Amanda had. But Fat Cyclist... there was a time when Fat Cyclist was a way of life for me. For us. Although Lizard wasn't able to keep up with blogs the way I did because he didn't have computer access around the clock like I sometimes did, oh, how he loved checking up on Fatty when he could.

How sad that I'm just now seeing Fatty's goodbye. Fat Cyclist was one of my favorite blogs to read back when I could read blogs every single day. I was sad when Elden moved to Red Kite Prayer because I knew that meant he would be writing less often. Red Kite Prayer was the top cycling blog on the internet at the time, and I thought I might like it as much as I enjoyed Fat Cyclist. Slowly, my life became a little too busy for as much blog-reading (16 grandkids overnight will do that to you!!!), so I didn't read RKP as often as I'd read Fat Cyclist. Before I knew it (because I wasn't reading as often), Fat Cyclist was back, and I tried to keep up as best I could. But life still got in the way. Fatty slowed his production as much as I slowed my reading, and when his posts became less and less frequent, I wondered if he was okay. I wondered if his family was okay. I wondered why I completely lost touch.

And that's sort of the way all blogs have been trending, right? Well, busyness and technology. Now it seems YouTube and podcasts are the way to communicate if you aren't on Twitter or Snapchat (which I'm not). Even Elden declares in his final post, "blogs are dead." (Just try to tell that to the quilting community!!!) Some of the cycling blogs I read years ago didn't make it to the then-average lifespan of a successful blog, which, at the time, was eight years. Many didn't make it eight months!!!

I vaguely remember one cyclist who also was a quilter, and I so LOVED that blog. It was open to the public only a short while. Many of the blogs I used to read on a daily basis are gone now. Many of the blogs I loved to check up on until my life took its unexpected spin a few years ago have either stopped publishing or are now publishing extremely randomly (kind of what I am tempted to do every now and then when priorities keep me from computer free time). Even Red Kite Prayer has moved on in the form of Cycling Independent or TCI.

Are blogs truly dead?

I still LOVE to read blogs, but I don't prove it at all. I visit a very few of my very favorite blogs maybe once every two or three weeks, and even then, I often don't have time and/or means to comment. (Access via one of my computers is restricted, so even though I might be able to read a few while multi-tasking, I often can't see any included images or comments.) Are security restrictions contributing to the death of blogs? Are phishers of the blogging world contributing to the death of blogs?

I don't want blogs to end. I don't want to give up blogging. At least not yet. I hate that I can't be as active as I once was. Especially now that it feels as if Lizard and I are a bit cut off from the rest of the world. Blogging was such a big part of my life. I keep hoping it can be again one day. Especially since I will not move to Twitter and I have even less time to devote to YouTube than I do to blogs. The blog community was my community, and I treasure it. Even now, when it can't be the priority it once was.

I wanted to title this blog post "Painful Goodbyes", but the last time I pulled something like that, everyone thought I was jumping off the deep end! I'M NOT!!! I'm pretty darned happy, and I'm not giving up!!!

But the blogging world has changed. I feel as if I've lost a friend and motivator, even though Fatty is still around, just not in the blogging world. The quilt Lisa (The Hammer) gave to Elden made me feel kin with her, even though I know next to nothing about her, other than she's very fast on a bike. Yet, she probably didn't make the quilt. She probably paid to have it made.

Magic lives on, though, because I have my own Fat Cyclist jersey with pink. It isn't going to be cut up and added to a quilt for a good long time because, thankfully, I can still fit into it. But jerseys come and go, just like blogs, I suppose. And I have cut up a few for a future quilt for Lizard. (Shhh! Don't tell him!!!)

And that means I still have something in common with The Hammer. Lizard will one day have something in common with Fatty. I don't have to pay someone to make it. Lizard likely will treasure it as much, if not more, as Fatty treasures his quilt. And that future quilt will be something full of rich memories both Lizard and I will be able to wrap up in together.

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Friday Funny

I've been trying to downsize stuff in basement boxes, and my current box contained this gem, written by my daughter (me typing as she dictated) when she was in middle school. Names have been changed to protect the Hardly Innocent. I can't stop giggling!!!

Last night when Raz went to bed, she didn't see the gremlin who snuck in her room with her. After she went to sleep, he got into her glitter, her fingernail polish and her hairspray.

This morning when she got up, all her stuff was gone. But her walls were sparkly and her shoes all smelled like perfume! Raz thought her brother Taz had played with her stuff. She marched right down to his room and screamed at him.

"Taz! You give me back my fingernail polish before I make you wear it to school!" she yelled.

Taz threw a pillow at her and went back to sleep.

Raz asked her mom what happened to her glitter. Her mom had pink and green eyes, blue lips and purple sparkly hair!

"Mom! Did you take my glitter?" Raz asked. Her mom was really angry.

"No more glitter for you, young lady!" her mom said.

Raz began looking around the house for her glitter. She found glitter footprints and began following them. The footprints went to Jazz's house.

Raz knocked on Jazz's door. Jazz opened the door. She had red hair and orange eyes!

"Raz, did you do this to me while I was sleeping?" Jazz asked.

"No," Raz answered. "But I'm trying to find my stolen glitter."

Jazz decided to help Raz follow the glitter footprints. They went down the street to the bus stop. Someone had written "Backstreet Boys! Drool!" all over the bus stop in hot pink glitter. When the 40X came, Raz noticed the bus had red and green glitter all over it.

The bus driver let Raz and Jazz ride the bus for free to solve the mystery. They went downtown and saw sparkles everywhere. There were orange and blue sparkles on Mile High Stadium and red and blue sparkles on the Pepsi Center. Even Republic Plaza had sparkles on top of it!

Raz and Jazz followed the glitter footprints down Cherry Creek to the mall. Inside the mall, they searched the WB store. Sure enough, there was the gremlin, hiding in a Mickey Mouse costume and covered with glitter!

Raz picked him up by the neck and threatened to hang him on the Christmas tree upside down. He stuck his glittery tongue out at her. Then he told her he couldn't give anything back because he'd used it all up.

Raz and Jazz dragged him to the Rocky Mountain Chocolate Factory and dunked him in chocolate! The gremlin loved it. But Raz set him on the 16th Street Mall, and pretty soon, two homeless kids ate the chocolate-covered gremlin.

Raz and Jazz went back to the mall to buy more glitter. Taz moved out and joined the military, where he hoped he would be assigned to bomb a glitter factory.

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The Harder They Fall

You'd best not mess with me, or you might end up in one of my best-seller novels!!!


That icky feeling you get when someone you admire takes a Humpty Dumpty dive...

Falling from grace has been going on since the beginning of time. We just hear about it more now because the internet makes it possible fo so many people to become overnight sensations. Oh, and that obsession with knowing what said sensation is doing every minute of the day. Have you ever noticed how some days, 80 percent of the headlines detail personal aspects of people who have a heck of a lot more money and time than us regular everyday folk???

I sort of lost interest in idolizing the rich and famous when one particular character I’d followed for quite a while let the whole world down. I’m not going to mention any names because I don’t want nefarious searches to land here. I don’t have the time to sift through the comments.

Nevertheless, there still are a few famous people I think might be pretty cool. There are a few I might like to meet one day. There are a very small few I watch so I can snatch up their next work, primarily authors.

One such author had actually finished a series I’d read cover to cover, and I’d waited as if on pins and needles, quite literally, thanks to my hobbies, for the final installment.

The final installment was released a while back, and I’ve been so busy, I hadn’t noticed. That author now seems headed for a bottomless pit of his own. Again, not naming names so curious looky loos won’t land here to stare and gape. Or rant and rave.

Trying to find out the latest in the developing story is a rabbit hole I don’t have time or interest to pursue, but by golly, I keep finding myself searching for the latest.

This author apparently modeled some of his characters on members of his family. (I didn't know that until he started making headlines.) He writes about real occurrences in his family’s life, and doesn’t even always change the names. He even acknowledged he couldn’t finish the final installment until after the last presidential election because he was shooting for realism. That alone should have set off red lights for me. But, I also haven’t had time to follow his progress. Perhaps thank goodness!

I don’t think I want to read his most recent work now. I’m rolling my eyes as I glance over headlines declaring real-life horrors bearing remarkable similarity to his written plots.

Intrigue. Suspicious deaths. Missing persons. Accusations of conspiracy.

Initially, I was horrified this particular author might have been caught up in criminal activity. But then as the days dragged on into months, I remembered a certain cyclist...

I need a sweet distraction. I wonder if I could write best-seller novels about snowflake designs or cross-state cycling tours or wildlife I encounter on the greenway? I’m sure I could concoct some degree of mystery and drama worthy of my time!

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The Birthday Adventures of Snowbow

The dragon is watching,
His eyes are aglow!
I hope he's not hungry...
Just in case, off I go!



I'm a little too small, I know,
To fill the helmet of any Cowbeau,
But blue and gray lead the way,
At least out where you play!



I was searching for one more big balloon,
But found something to make me croon!
I may have missed the big day,
But I wish you happiness anyway!



What a great day to wear red
And velvet cake to be fed!
Can’t wait for the music to start,
Can’t wait to share the love in my heart!



If someone gives you any lip
I'll kick them from the hip!
Been working out, just like you,
'cuz that's the healthy thing to do!



A mother's love is the best
In the east and in the west!
Tiny little bundles bring
The happiest of everything!



You've got a bit of shade to share,
And I've a touch of humor, I swear!
If our talents we combine,
We can make everything fine!



Gollum is still on Mom's list,
But she hopes you like this.
Her hook this year was just too slow,
But one day she'll finish with gusto!



A burst of color, a breath of sun,
A hint of summer for winter fun!
The snow keeps piling up this year,
But warmth will come; never fear!



Challenges come and challenges go,
But that never stops this Daddy-o!
Just be bigger than you know,
And adversity you will outgrow!



I think I'm going to need a bigger cake
For a suitable celebration to make!
No party's big enough for you,
We'll have to do this again in a month or two!



The bump is growing every day,
And soon a third will head your way.
The joy is bigger than the bump,
Love will make hearts really thump!



Christmas Eve and Christmas Eve's Eve are special times,
My anniversaries of family outside the lines.
This family isn't quite like the rest,
But my adoptive family fits me best!



This marks the end of the birthday show,
For this is the last birthday to go.
I can't believe I made it through,
But now other things I can do!

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The Birthday Adventures of Snowbow

I think, I think
I'd like a cupcake pink!
Strawberry or cherry,
Both would be so merry!



All this snow is fun to see,
But when will warmth return with glee?
Might have to jump-start that mercury
With so much heat, the cold will flee!



Time to take a well-deserved break,
Time for relaxation's sake,
Time to slow down and rest,
Time to spend with those loved best!



Yes, it's cold, but I don't care;
I'll still find cheer everywhere!
As long as the temperature continues to drop,
I'll not let my motivation stop!



Somebody tried to sneak by
Without a wish from I;
Ha, ha, ha! I found out just in time!
Hope that's not too serious a crime!



Didn't make it home this year,
But still thinking of loved ones dear;
Amassing thoughts and weekend cheer,
The miles can’t keep us from feeling near!



Today we focus on red, white and blue,
But that doesn't mean we forget about you!
Time for joy to be swirled...
Your smiling face can light the world!



Always on the go,
Sun, rain or snow;
Let's get this day on the road
And employ an adventurous code!



The best lemonade in life
Is made while seeking joy in strife.
Though hard knocks may abound,
Sweetness may always be found!



Wheels of time spin away,
On the road another day;
Won't be long 'til we meet again,
And we can't wait until then!



For some it's a tangled mess;
Fear causes others to confess;
Some see craft in every strand;
But we all love the web you've planned!



Just when you think life needs bling,
Along comes a welcome blast of spring.
Then just as the short sleeves reappear,
Another winter storm comes near!



Mom makes; you make!
Put us together, for heaven's sake!
Just think what we could do
In a room full of crafts for two!



In just the wink of an eye
Fiber becomes a butterfly;
A hook in hand is bound to win,
Just watch what these hands can spin!



A day late and a ring short,
But Mom had not finished my cohort!
Now we're off to see the shire in snow,
Hoping for legendary magic to bestow!



Up, up and away we go,
Far away from all this snow!
Up, up in the sky we fly,
Never high enough to satisfy!



A slice of heaven is all I need,
Well, that and maybe some fireweed seed...
If I wish upon a star,
Perhaps I won't be away so far!



Living for the slopes is grand,
But city life is just so bland.
Weekends don't come quick enough for me;
Can't wait for the next snow spree!

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