Tuesday, February 25, 2020

Marijuana and Alzheimer's

Isn't it a trip?

I have news on the new camper-trailer and a report on the Big Honkin' Trike Rally but that comes later.

Because I am thinking I need to score some weed.  Not much, just a leaf to stick in my smoothie each day.

You see, I goofed up and it turned out to be fortuitous.  I went to the dentist for Xrays.  I grabbed the Discover Magazine and sat and read.  I was grateful for the relaxing time and the learning.  The article about the medicinal studies being done with weed was in the March/April 2020.

I sat for 1/2 an hour reading before the woman at the counter told me that my was appointment had been at 10:30 and not at 11:30 when I had arrived. 

I think they must have called me to change the time when I wasn't by my paper calendar.   Yes, I am one of those old folks that still uses a paper calendar instead of my Google or my Outlook Calendar.  It is silly, I got caught with a few mistakes on the electronic calendar and so I just don't trust myself with it. 

The magazine had pages falling out of it, so I tucked it into my  backpack before I stepped up to the counter to re-schedule.  Now it is sitting next to me and I can re-read it and share the information.

They are discovering that mice that are 18 months old, which is equivalent to a 70 year old human, and are showing signs of cognitive decline (They can't find the cheese in the maze anymore.) are regaining the ability to find the cheese when given a low dose of marijuana.  And that young mice don't lose their ability to find the cheese as they age when they are given a daily dose.  Not enough to make they "high". 



I already knew that Marijuana is good for agitation and aggressive behaviors in dementia patients. 

Many studies done on mice do not translate over to humans.  But THC (the chemical in Marijuana) is a chemical that affects both mice and humans in the same ways. 

The frustrating part is that because Marijuana is still a controlled/banned substance by federal law, studying it and finding product to study is not easy in the USA.

Also, because Marijuana is readily easy to grow by homes, the drug manufacturers can't make money off it, so they not only don't want to pursue such studies, they want to squash or warp any results.

The article not only talks about dementia but lists the diseases where cannabinoids, such as CBD and THC seem medically helpful.

AIDS (Increases appetite)
Anxiety and Panic Disorders
Cancer (Stimulates appetite, reduced chemo-related vomiting, manages pain)
Digestion Issues such as IBS
Epilepsy
Heart Function (Relaxes arteries)
Immune System Complications
Inflammation
MS
Pain
Parkinson's Disease
Schizophrenia
Sleep Disorders

And it doesn't hurt a thing to take a low dose. 


Feeling Too Busy


Some days and weeks you feel like you have so much to do and so many responsibilities that you are in a panic to get it all done and not drop any balls, right?  At least that has been me in the past couple weeks.

And all the while I am enjoying the activity I am doing, I know I am missing being with others that are doing something else.

I say no to activities I want to do because I have other activities on my schedule already and it frustrates me and adds to the stress of being too busy.

And then suddenly a day opens up, or two, and things are finished and I am standing in a wide-open space of time.  How comfortable are you with that feeling?  The wide-open time feeling?

I cleaned out some spaces, and organized others, and got caught up on a few things that had been needing attention.  It felt great!  AND it also meant that I had gotten the time by saying "NO" to other activities.

When you have some free time, do you quickly look around for stuff to do to fill in that time?

Yesterday I had gotten an automatic email response from Melissa that runs retreats for dementia caregivers.  The retreat is a combination spa and learning weekend .  It is free for the caregivers.  I had emailed her to get an address to send another stack of books to gift as prizes to the attendees.

Her auto-response went something like this:

I am chilling and part of that effort is to reduce my screen time.
It works, try it.

She was a lot more eloquent about it than my synopsis, but you get the jest.  Reduce your screen time and enjoy yourself more.

And since I was feeling stressed I put my computer to sleep and walked away.

Just like that!

Later in the day I went back to check email and check into Twitter, but I tried not to stay long.  Instead I cleaned house, made phone calls, and went to the gym.  I fed Ted (not his real name, the man in our neighborhood with dementia whom I help check on and feed).  I walked to the pub with friends later in the day and that was fun and just enough.

In the evening I cracked open a paper novel instead of reading an e-book.

Our bike group was riding yesterday and today.  Interesting rides with fun people.  I didn't go on either ride.  I felt a little discomfort with missing out, especially because there are some friends from out of town that will be leaving soon.  But I also knew I was doing what was right for me and my physical and mental health.

Take care of thy self!


George was my activity pacer.  Before he had dementia he would tell me when I needed to slow down.  Sometimes when I was in a panic trying to juggle too many balls at once, he would have me list my activities and help me prioritize them.  Often there was something that I could just drop, or put-off until later.

Now without George's physical presence I find myself stopping and trying to channel him in a sense.  I think about his calming and logical way of going through my list and feel the effect of his mojo.  He is with me still.

The Interview

All Author interviewed me and has placed the interview up on their website.  I liked their questions, but I think I got a little long-winded in my answers.  What do you think? 


Susan Straley latest interview by AllAuthor Susan Straley was born with an urge to wander. At three years old, after a frantic search, her parents and neighbors found her three blocks from home happily playing in a mud puddle. So it seemed natural to Susan, when her husband received the dementia diagnosis, to want to run away. Susan does an amazing job of sharing one couple's journey/adventure across the country while struggling with a new reality in the book, Alzheimer's Trippin' with George. She aims to enlighten while entertaining through her writing. Read full interview...

Weeroll Camper


Debra said she saw a video of the Weeroll factory and my camper had the windows in it.  So I texted the factory owner and asked if it was ready to "roll".  He said that the windows were in and he would check to see what else needs be done.



That is the last I heard.  So on Saturday (2/22/20) I texted him and said I was coming to pick up the trailer on Friday, February 28th.  "Is that ok?" I asked.

I have not heard back.

I did hear from the person in charge of our neighborhood storage corral that there is space for my camper.  I am going to go look at the space.  Then I will have to figure out how to back my trailer into a tiny space without crashing into anyone else's trailer.

I may need to park it someplace else while I practice getting good at backing up.

Wednesday I get the hitch put on my car.  Yes a 7-point plug and hopefully they also install the brake controller thingy.

Someone told me about these balls with magnets that can help you line up the hitches.


And I got a 30 to 15 amp adapter.  I guess when I get to the campground it will make sense.


I got some plastic Lego-like things for leveling under a wheel, and I found two peices of plywood in the garage left from the previous owner.  I am told not to leave it parked with the wheels on the dirt.  I have to back them over something to protect them when parking longer than a couple nights.

Big Honkin' Trike Rally

It was a huge success.  Thanks to the Bradfords, the Hansons and the Thompsons for organizing a great week.





 The first ride we ended up at the Hansens' home where they served a meal.  I re-met Denny and Peggy from Illinois.  Peggy reminded me that we had met at a Catrike Rally.  They remembered George taking them on a longer ride and then talking to them about how great it was to live here.  It took a while but then I recognized Peggy.

Denny bought both books right away and read them both during the Rally.  He is a fast reader for sure, since we also spent a lot of time on our trikes and yakking.  Thanks Denny!



The first dinner had about 60 people but the weather was great and we were able to lounge around outside.

On Wednesday I led a ride to see the Ferris family zebra.  The ride was very leisurely and was a big hit.



100 YEARS - Vote

 This year is the 100th anniversary of the women's right to vote.  Be sure to practice this right that so many worked so hard to attain.  I always say that Bicycles Change Lives.  And for women's sufferage the bicycle was a tool and part of the movement for women's rights.




Book Cover of the Month

The Journey Continues cover received over 300 votes for cover of the month.  Thanks to all who voted.  I did not make it to the top 24, ending up being the 44th among hundreds of covers.  Thank you all for voting and sharing. 





The picture above is a mock up, this bus depot sign doesn't really exist somewhere.  But I love the mock up. 

Through this contest many more people got to see the word "Alzheimer's" and the two people having fun on a tandem trike.  Because of this contest and your generosity with your social media shares and your votes we are reminding people that life doesn't end with the diagnosis. 

There is still much joy to be experienced.


Thursday, February 13, 2020

The Dam Is Broken - Decisions Flow!

I am really surprised at how easy life and decisions can become once you decide on a path and start down it.

I still agonize a bit over decisions, I still hit major obstacles.  But wow, I have made some major decisions (to me) and I don't feel a lot of regret or angst.  Isn't it a hoot that at 66 we can still get a thrill out of life's challenges and twists and we still struggle and worry for naught?

Of course it helps to have supportive folks offering to help.

Speaking of worry and stress...

A fellow biker told me about a book she is reading by Mayo Clinic.  Guide to Stress Free Living

The biker said she is always doing something and she didn't feel that Thai Chi was as good a meditation as doing nothing.  Yet she doesn't like doing nothing.

I have been saying "no" to some things I want to do because I need to have some down time.  Balance is what keeps me healthy.

I want to do so much, but my parents and then George were the ones to hold me back from doing too much.  Now I miss the George activity regulator.  I have to be wary and monitor myself and say "no" though I want to say "yes" to it all.

What do you do to reduce stress and keep healthy?

HOUSE SHARE


It has been over two years I have wanted to find someone either part-time or full-time to share my home with.  Recently I got an email from a Warmshowers.org member.  She is from South Dakota and isn't traveling by bike but was staying in Florida for the winter and was looking for an "affordable" place to stay for a few months.

Now she is my house-mate!  And it is working out great so far.  She is pleasant, and quiet, clean and polite.  AND she rides a recumbent tricycle!  She even agreed to stay in the upstairs bedroom until after the trike rally because I already had booked a couple rooms with guests that I was excited to see and host during the rally.

For the next week this place is going to be buzzing.

WOODSTOCK-ESQUE Trike Rally

There are new residents and trike riders in Inverness.  They have all moved into the same neighborhood.  I call it Trike Town.   The group invites their friends that ride trike each year to a trail and have a little rally.  There is about 10 to 12 couples in all, usually.

This year their rally takes place on the Withlacoochee.  Most of the rides starting from the Central Motel where many of the attendees will be staying.  They named the rally "THE BIG HONKIN' TRIKE RALLY" and put in "public" mode on Facebook.  A few shares and weeks later and they are surprised that they may have well over 70 people at their little rally.  And that is just the people who contacted them.

As we were discussing where to park the cars for one of the dinners they were hosting, we laughed and mentioned it might turn out like Woodstock - miles of cars and not enough bathrooms.  I will be posting pictures here once the dust settles.  No sex on the lawns please... no dropping acid either.

I am excited because my new friend I met in Xenia, Ohio this summer, Linda, is coming to stay at my house.  She is a trike-rider, joy-spreader, hiker and travel lover and former truck driver.  We is going to have some fun!


My long-time friends, Rolf and Barbara are also coming to stay here too.  Our home will be party-central for the week of the rally!  Many recumbent enthusiasts know Rolf and Barbara because they owned the Hostel Shoppe in Stevens Point, Wisconsin.  For many years they hosted the Midwest Recumbent Rallies.

WEEROLL vs A-LINER


I made a decision on a trailer to live in this summer while up in my seasonal campground spot near Rhinelander, Wisconsin.

A man in Tampa (I will call him Steve) had ordered a WEEROLL from the factory.  He was going to use it to haul his motorcycle and camp in it.  Then he got in a motorcycle accident and decided he wanted to be on a motorized vehicle with four wheels instead of two.  So he needed a bigger WEEROLL.  He put his WEEROLL, that was under contract with the manufacturer, up for sale.


My friend, Debra, who is anxious to have me as a camping buddy, forwarded his ad to me.  I called him with questions, thought about it, and called him back ready to move forward.

The decision went like this.

Mostly, at least to start out, I will be in campgrounds with electric hook-up and showers and bathrooms.  So I don't need a bathroom in my unit to maintain.  (The less to maintain the less that can go wrong.)

The WEEROLL is a well-built utility trailer with insulation, windows, and electricity.  It is simple, cheap, and versatile.  The furniture is not fixed (unless I attach it to the walls), so I can change it out if it doesn't suit me.  The WEEROLL empty is about 1100 lbs, which is well below the 3500 lbs that is what my van can tow.


Steve offered to sell me the trailer (contract for the trailer) for $1000 less than he paid for it.  So I was getting $1000 discount on a brand-new trailer that cost about $11,000.

The A-LINER is also well built but has fixed furniture.  When I talked to a dealer about making changes to the interior, he said they don't do that because it can mess with the integrity of the structure.  I felt the A-LINER had uncomfortable seats and I wouldn't have room to add my own chair and table to write and work on rainy days.  The advantage of the A-liner is that it would provide less drag and I could get one with a sink and fridge.

Because of the shape and folding of the A-liner, I could not add an attached awning to it.  I have learned from camping with others and in the rain, that an awning is very useful.  Especially on rainy days.

I liked the freedom to change the Weeroll with ease and the price was right.  My friend Debra also had a Weeroll on order.

The WEEROLL Factory Visit


Debra and Frankie and I went to meet Steve at the Weeroll factory to see the progress on the trailer and talk with the Weeroll factory owner.  Steve was hoping to end his contract by having me start up a contract for the trailer.

Tom is the owner of the Weeroll factory.   When we arrived he pointed to a trailer all completed except for the windows right next to us.  That, he said, was our trailer.



After looking at the trailer, we went to Tom's office down a huge-dark hallway.

Tom was all in a dither because the manufacturer of the windows he uses in his trailers is behind schedule and his whole production line is held up waiting for windows.
 
In the middle of the meeting to switch owners of the contract Tom mentioned he needed to eat, he was borderline diabetic.  I pulled out a banana, a fig, and some nuts from the bag I brought in case our meeting went on way past lunch.  Tom grabbed them gratefully and inhaled the figs.  Shortly after Tom ate he was a calm person, the "dither" disappeared.  Life was good again.

Anyway, I ended up writing a big check.   I now own a Weeroll, though it is still at the factory waiting for windows.

Debra got to see her trailer that was 1/2-way completed.

As we were driving away from the factory, Frankie, who was sitting in the back seat said, "I can feel the tension coming from you two in the front seat."

I looked over at Debra, she sat looking forward, eyes wide.  Debra and I both were feeling apprehensive.  I had just written a big check and wondered if I was doing the right thing.  Debra said she had a pit in her stomach.  We both knew in our gut that decisions and changes don't always go without hitches.  We were waiting for the other shoe to drop.

SHOE DROPS!

Today I got the contract in the mail from the campground in Wisconsin.  It turns out they have requirements that all the trailers and RV's that stay there be RVIA compliant.  What's that?  I wondered.  I looked it up and discovered a discussion among those trying to camp in converted vans and utility trailers and tiny homes.  They can't stay at many campgrounds because their rig or type of rig has not be RVIA certified.  SKITTLES!

This is an organization of RV manufacturers and dealers not wanting less costly items on the market and being used.

Now what?   I will figure it out, I have time.  "It's OK," I tell myself.

I text Debra, she calls me, we cuss a bit and decide not to panic yet.  We will make some more calls to campgrounds and see where we might be allowed to stay.

I call my sister.  She tells me it's no problem because I can stay in their yard.  They are outside of the city limits.  

My vision of being in a seasonal campground surrounded by friendly and long-term campers that create some kind of supportive and fun community is dashed.  I wanted regular neighbors, I liked the idea of a laundry room, pool, beach, and being able to bike to town.

The last thing I wanted to do was impose on, or add stress to, my sister's life

Back to the drawing board to create a new vision.  I will keep you posted.

*******************

Dementia vs Alzheimer's

 The Mayo clinic explains clearly the question that people always ask me,  "Is dementia different than Alzheimer's?"

"Dementia describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with your daily life. It isn't a specific disease, but several different diseases may cause dementia.
Though dementia generally involves memory loss, memory loss has different causes. Having memory loss alone doesn't mean you have dementia.
Alzheimer's disease is the most common cause of a progressive dementia in older adults, but there are a number of causes of dementia. Depending on the cause, some dementia symptoms may be reversible."


We did it!

Last time I posted I mentioned I was nominated for book cover of the month and asked you to vote for the cover of THE JOURNEY CONTINUES.

Thank you to all that voted I got enough votes to make it to the second round... the Tandem Trike was in the top 100 covers!  Votes are still being made and they are letting people vote more than once.  Last I checked we were at #46!   Not number one or two, but still...

I am proud of the cover, our active lives, and grateful to you for your votes.  Thank you!

You can still vote! 

And guess what!  The ebook version is on sale this month for $2.99.

I have 16 ratings on the book on Amazon so far.  90% of them are 5-star.

Scott Martin writes: "Sue is so down-to-earth as she teaches us what really matters in life. Her love for George is an inspiration."




Sunday, February 2, 2020

Decision Freeze and Then BAM! Shazam!

STUCK IN THE WHINE


I want to warn you, this first part may sound whiney.  I have a little kid that sits on my shoulder and whines on and on and on.

"I don't want to," she whines.

But before I talk about that and lose your interest, please vote!  No, this isn't a political plea.  My book cover was nominated for cover-of-the-month.  And I need folks to vote for THE JOURNEY CONTINUES.  Click here and vote.   I think we only have a few more days to vote, so do it now.


Ok, now back to my indecisiveness and the whiner on my shoulder...

Decisions sometimes come hard.  I was talking with a fellow Dementia Diva Widow and she said she is lost, she just doesn't know who she is or what or where she wants to be.  I could relate.  I heard in her voice the echo of my whine.

This feeling is very familiar to me.

Some people try something in sixth grade and know that thing is what they want to do for their career.  For George it was Drafting Class in High School.  He got an A, it was an easy A, that was his sign.  I never got a sign like that.  Or maybe I did and was too daffy to recognize it.  Or the inkling got squashed...  maybe I let something someone said influence my decision to go a certain way.

I don't know, but all my adult life I have only a few times felt strongly that I was doing what I should be doing.

Of course one of those times was taking care of George in his last years.  Another time was when I was working for a non-profit on women's rights.  I felt driven and full of purpose for the 4 or 5 years I worked there... until I didn't anymore.

The summer after George passed and I was working to turn our story into books, I also felt very driven.

Did you get a sign about the direction you were going to go at a young age?  Many have.

So now, here I am, thrilled that I am at least comfortable enough and well enough to have choices, but hating to have to decide.  Saying yes to one thing means I am saying no to so many other things.  If I say yes to travel it means I am saying no to activities happening and people I love at home.  Yes to travel means no to a job at home and could possibly hurt my financial well-being in my ancient years... if I have ancient years, if not my ancient years then my financial legacy.

If I say yes to a job while I am traveling, it takes away from the freedom of the experience of traveling in some ways.  Spontaneous gatherings would have to be planned around work hours.  (Shut up you whiner!)

Maybe I have trouble saying no to anything, because I love so many people and activities.  I want to be around with this person more and that person more.  As my life moves on and my social circles expand, I find that the time I get to spend with each person isn't enough.

And besides spending time with people, I want to ride trails and roads, I want to write, I wanna...

THE DECISION


Once in a while I get a moment of clarity.  What is important? If I found I had some terminal illness where would I want to be? What would I want to do?

Today was one of those moments.  I suddenly saw with clarity that my sister is who I want to, and who I should be, spending more time with this year.  And if I want to jump into camping life, what more comfortable place to do it than close to family and friends in Wisconsin where George and I lived for almost 30 years.

I started looking at campgrounds up around where my sister lives in Rhinelander, Wisconsin.  I found a few, she pointed out one.  I called them to ask questions and before I was off the phone I had made a decision!  I reserved a seasonal spot in the campground for this summer.

When I got off the phone I wanted to cry.  I had been struggling so long and suddenly I just jumped in and made a decision and it felt right!  Oh my!

MORE DECISIONS - THE CAMPER


I don't have a camper yet, but I have settled on two that are light-weight and roomy enough.  They can both be towed by my current mini-van.  And my trike and bike can fit in the van and go along.

The two trailers I am looking at are the WeeRoll and the A-liner.

A WeeRoll is an insulated utility trailer with windows.  I will have to buy furniture and figure things out with that.   The WeeRoll could hold my second bike while traveling.

I am also looking at an A-liner.  This would have a built in sink and cabinets and fold down for less wind resistance when traveling.  It would be easier to have ready for me to use.

Both are less than 1800 lbs.  My mini-van has a limit of 3500 lbs.  They are about the same price... well before I add furniture to the WeeRoll.  The WeeRoll will have more room inside.

Decisions when you have a partner can be harder because you have two people to please, you have to compromise and sometimes be frustrated because you don't agree.  So I guess I shouldn't complain about making decisions on my own.

Though I would love it if any of you with knowledge of campers and shopping for campers and decorating campers can go with me or guide me in any way.

WHAT ELSE IS HAPPENING


Now that it is winter up north, I am getting more visitors here.  All so far have been from the Affordable Travel Club and from Warm Showers.  Tonight I have Robb Freed who has biked across the country from ocean to ocean four times in the past two years.  He is doing it to raise awareness and funds for a rare disease that killed his infant son.

The first book in the Trippin' Series is still in the Top-10 in sales for two categories of books on Amazon. 



And the nice reviews keep coming.

The Journey Continues is now up on NetGalley available for reviewers and book bloggers to read a free copy and leave a review.



I spoke at the 6th Annual Coping with Dementia Conference.  My friends Debra and Glen and Connie and Jerry were there.  Debra came up to me after my speech all shiney-eyed and said I did great and gave me a big hug.  So nice to have them there!  And one of the Dementia Divas was there too.

Here is Debbie Selsavage whose organization, Coping with Dementia put together the event.



 I was trying to take a selfie with Connie and Jerry but my arm wasn't long enough.  The woman sitting across from them kindly offered to take the picture. 
 The George tandem was there by special request.  I told the story of George's love for riding trike and how that love kept us both involved and active throughout his illness. 
 There was a musician there, Earl, that plays with Paula's Pure Vintage band.  He has been living with Alzheimer's for years and still plays and sings.

There was a man that lives in an assisted living home and loves plants.  He took the plants that were dieing and made them bright and happy again.  So now he has a whole garden in the back of the home where he tends plants.  Since finding his passion again he has become a much more cooperative and easy person to assist with his tasks of daily living.  Maybe that was why George remained sweet throughout his illness.

These were inspirational stories all on the theme of finding the person that still exists in spite of the illness.  George's passion for triking and love for old cars and love for me shined through all the way.

I took a picture of the trikes inside the mini-van.  Yep!  They both fit with room to spare.


At the event, I sold about four books and gave away two and donated $10 to Find-m-Friends (the blood hound training program to help locate lost persons).

The next day I attended another conference.  I didn't speak, but I gave away two books and sold two books and re-connected with my former boss,

MARCH TO ARIZONA

In March I am flying to Arizona and this week I took my two-wheel cruising bike to the bike shop to get it ready to fly.   I needed some bolts un-frozen and some instructions on how to box it up and ship it.  I decided not to try to fly my trike, but to cruise around on my bicycle. 


THE GUY

A few days after I posted my last blog the guy was on my doorstep wearing a lovely white tuxedo.  He was off to dinner in St Petersburg, he said, and he stopped by to pick up his book that he left with me.

I searched for it and finally found it in the den near the front entry.  I keep boxes of my books in the den.  When I handed him his book he asked if I liked it.

"No," I said.

"Why?" he asked.

Then as I started to explain that it wasn't my type of book and that it jumped around too much and wasn't edited well (or at all).

But he started talking over me right away. "Not enough sex in it," he said, "That's what the ladies say, not enough sex."

"No," I said.

He looks at the boxes, "What do you have in there?"

I proudly show my books.

"This is a great book," he said.

"You have read it?" I ask.

"No," he says as he continues to lay on the praise.  I escort him out the door he says, "No, really, its a good book!"

Today he stopped in his car as I was walking over to feed Ted.  He asked if we could go out for coffee again sometime.

"No," I said, "We have nothing in common.  You will find someone that fits you better than I do.  Keep looking."

After some more pleasant conversation we went our separate ways.

Some decisions are easier than others.



Riding up the COVID Bell Curve as Best We Can

Sunday, March 29, 2020 The surreal situation, we are now living through a pandemic that has: Put millions of people out of work because...