Wednesday, April 11, 2018

Up in the Night

There are so many things that make having a movement disorder annoying, but two things really stand out.  One is having to think about every single component of basic activities when I never did before.  Secondly is getting up during the night.  Having a pea–sized, rather than camel–sized bladder makes it more complicated with Ataxia.  I'm grateful to not be cognitively impaired as I awaken, requiring only a brief period of orientation to get the correct direction.

However, it's important to remember where I am.  It's either in Lake Oswego with Earl on the left side of the bed, the bathroom is to the right or in Maui where he sleeps on the right and the bathroom is to the left. But, there is one more thing to think about.  Thelma, the travel wheelchair, brakes high in the back.  Louise, the home wheelchair, brakes low in the front. Which chair awaits*? What would be the consequence of getting it wrong?  If facing the wrong direction, I could cough in Earl's face.  I don't want to even think about the other possibilities.

If I need to get up once or twice, OK.  But three times a night with the requisite thought activity is a bit of an interruption to my sleep habits. I'm fortunate to sleep inordinately well and consider that a big contributor to my overall good health.  I don't want to jeopardize anything in my favor.  So what to do?  I briefly tried to ignore the sensation and just go back to sleep.  But, I learned years ago, that the feeling never goes away, and it's best to just get up and go**.

It's hard to ignore your sleeping partner when they get up at night.  If they're awake, you're awake.  I try to be as quiet as possible, but it's mostly a futile effort.  Transferring from bed to a wheelchair in the dark, backing out while avoiding furniture, getting into the bathroom, standing and pivoting, sitting down is a veritable 'symphony' of sound.  Earl says it doesn't disturb him, but, truth be told, he's trying to be a good sport.  I mean, come on!  It's not like I'm a bull in a china shop, but neither am I Tinkerbell.

I have always resisted medications designed to treat overactive bladder/nocturia.  Not sure if it's fear of side effects, ineffectiveness or being generally averse to the big pharma marketing.  The TV commercial goes...'(as a mother rushed to the bathroom in the middle of her daughter's wedding dress fitting) "I was tired of missing out on life's moments, talked to my doctor"... blah, blah, blah'.  Spare me, please!  I just want to sleeep better.  So, what the hell.  I'm going to give oxybutynin (generic medication).  After 4 nights, I would say it is making a difference.  Twice/night as opposed to more frequently.  I’ll take it.

The lesson: At least I do get up first. That's something.

*Previous post: New Wheels: The 'girls'
**Previous post: Untoward Exits

Sunday, April 1, 2018

March On!

It's no secret that my political views lie to the left of center.  This post may well offend some more conservative friends, but it won't be the first time. 
The 'March for Our Lives' was important to me, but I was concerned about my limited mobility.  I needed Earl to get us there and he strategically parked halfway between the start and the finish.  It wasn't too far before the three of us reached the gathering multitudes and was also easy for us to return to the car at the end.

Have scooter, will march
Venturing forth in a large crowd when one has a disability and views people at waist level has its disadvantages.  In fact, it can be downright hazardous both for me and those in the crowd.  I learned in Disneyland to keep your eyes straight ahead, pay attention, and move with the crowd*.  I was relieved not to have been involved in any mishaps.  Fortunately, I had Earl and granddaughter Zoe to blaze the trail, but I did manage to score Earl's heel twice.


 As at Disneyland, children and strollers abounded.  Granted, the march organizers were teenagers, but I found myself marveling at the babies and children of all ages everywhere.  Nothing like the safety of youth to get people riled up. Parents dressed their munchkins for the cold.  Although adverse weather threatened, it neither rained nor snowed.  However, Earl and I had just returned from Maui 24 hours before and weren't yet used to the multiple clothing layers required in the Northwest.  I thought for sure that Spring would have arrived by the end of the month—but no.

Signs & songs & grannies, oh my!
Probably all the demonstrations featured some pretty creative signs.   But the Portland march had some great ones and that turned out to be a fascinating part of the morning as well.

The lesson:  I wasn't the only mobility impaired person there.  As with everything, activism is more work and takes a village, but it's doable. 

*Previous post: I'm Going to Disneyland!

Previous post: Getting Out the Disabled Vote

Saturday, February 3, 2018

Christmas in excess

Disclaimer:  I was working on this blog in Maui when the false missile alert occurred.  That seemed more timely, so I put this one on hold.  This posting is a bit unseasonably late.
Portland's outdoor Christmas Tree
 I enjoy the holidays and have learned to embrace the 'less is more' philosophy of last year*—until this year.  Being raised Catholic, our Thai student had plenty of Christmas seasons, but no country does over the top celebrating like the US, especially the commercial, excessive, and secular parts.  We decided to share the whole experience.

The Jingle Bell Walk
Special events are part of this season.  Even I participated in both, one traditional and one new.  Every year, Earl organizes a Jingle Bell walk.  They walk from downtown hotel to hotel looking at (and judging) the holiday decorations. This year since the weather was good, Skeeter, me, and the granddaughters joined in.  We were concerned that the size of our group would discourage hotel staff from allowing us in–but they welcomed our large group in and showed off their Christmas decorations with pride.  It was fun and we finished at the downtown bakery for coffee, chocolate, and treats.

Christmas Lights from car
Viewing Christmas light displays sounds great, but it's often cold and wet in Portland in December.  Kids often don't enjoy that, no matter what adults may think.  This year we viewed the lights at the Portland International Raceway from the warmth of our car.  Uncharacteristically, there was no traffic, no rain, no ice on the roads, and no tears.

Every year, we come up with a non-traditional menu but I was running out of new ideas.  We had done Italian, Asian, Greek, Middle Eastern and were beginning to recycle through the international cuisines. I had two requirements for a fun Christmas dinner—good food and a rowdy house.  The solution came from both family and friends.  Our daughter Heidi and her husband Michael suggested New Orleans Creole/Southern food and we happen to have friends who were lifelong New Orleanians.  So launched the Mardi Gras Christmas—over the top, colorful, and fun.
Mardis Gras Invitation

Pam, the head dΓ©cor elf, enlisted the help of a granddaughter**.  We were the perfect team—one general, one soldier, and me. It was even more perfect once I left to take my nap and got out of the way.

I always fessed up to being a big tree dictator.***  But even our Thai student was surprised at how big the tree was and how fast we bought it.  Niece Jill, the tree elf**, dutifully put over 2300 lights on (what, too much?).  Even Earl got into the 'elf' mode and created his own themed tree topper.  A star?–no, an angel?–no.  It's a Mardi Gras themed top hat with birds!
Our over the top tree

Christmas Eve
Our daughter in law and son hosted a Christmas eve pajama party.  Having no themed pajamas, Earl and I had to order some in order to fit in.  The grandaughters provided entertainment and Porter provided extra 'sloppy dog' hugs.

Christmas dinner was quite the happening.  With 22 people in the house and three tables, it was loud and fun. There was no sign of a holiday minimalist*.  In spite of the icy, inclement weather that cancelled many Christmas celebrations, only one guest couldn't make it. Good thing or we would have had a lot of New Orleans Creole/Southern food left over. 
Christmas Dinner

The lesson:  It was certainly an excessive Christmas celebration and fun as well.

*Previous post: Minimizing the Holidays
**Previous post: The Holiday Elves
***Previous post: The Holiday Dictator

Sunday, January 14, 2018

Always Something New in Paradise*

Just when I thought we could do nothing new in Maui, the nuclear missile alert happened.  It's always something.

At 8:00 am, Earl’s out for his beach walk and waiting for the start of the Maui High School canoe races.

I’m in the condo when I get the first alert. At the same time, with canoes about to go in the water, all activity was halted.  As a wheelchair-bound person, I was concerned, but not panicked.  I mean, really?
First alert 8:04 1/13/2018

To Earl
T: Interesting alert. Where would we go for shelter from a nuclear missile?  More to the point, does it matter?

E: Not sure. Turn on the news

T: The news says if you’re outdoors, go indoors.  If you’re indoors, stay away from the windows.  They said that they will let people know when the alert is over.

E: Do they say anything about when the canoe races are going to start? (He was just yanking my chain. He really came back to the condo)
8:34 Oops. Nevermind 😳
My first clue that there was no cause for concern was when I tried to get further safety instructions and all I could find on the TV were ball games. The 'oops' came 35 minutes later.  The second clue was the total lack of sirens.  The Hawaiian islands test the warning sirens monthly.  The system is sound and residents take it seriously.

From our niece, currently on Oahu, taking care of her school aged twin cousins and her 80-year-old aunt with Alzheimer's.  That's when I began to appreciate the variance in response to an alert depending on one's age, responsibilities and location.  Pearl Harbor and Hickam Field are on the island of Oahu. 
Wow, classic scene in Hawaii during a missle alert, watching the paddlers pause. We’re all ok. As I woke up & rushed my little cousins to the tub (less windows), Aunty Susie sat at the table eating her breakfast & sipping her coffee with no worry 😊 while I scurried around to confirm the news. Odd—no communication from the governor or mayor over cell phones or TV.
We started hearing from friends and family on the mainland.  The threat over, most were curious about the response.  It varied between trying to get a flight out of the islands (are you kidding me?) to turning over in bed and going back to sleep.  One friend called Earl and asked if we just hugged one another.  Another friend, old enough to remember the 'duck and cover' days, texted...

The lesson: Wouldn’t you hate to be the person who accidentally pushed the button and sent the false alert? 😜

*Previous post: Nothing New in Paradise

Monday, November 13, 2017

The High School Reunion

The Lake Theater and Cafe
For the last year, I had been part of a 10–member committee planning our 50th High school Reunion.  Lincoln High in the 60s was the 'downtown' high school and was also the newest, being the 2nd iteration.  Fifty+ years later it's falling, like us, into disrepair and is slated for replacement (unlike us).

Lincoln & committee c. 1967
Although I had physical disabilities, I had only minor cognitive decline, related to being 68 rather than my ataxia.  The benefit was that I still remembered how to design and use a database—very beneficial with the data collection tasks.

Accumulating alumni information over the course of a year insured that I would recognize most classmates.  It also gave me an opportunity to catch up in advance of the reunion.  The rest of the committee members didn't have that advantage.  Incorporating the reunion planning committee as a new group into my 'village'* was an unexpected benefit. It was more fun than planning a wedding–fewer details, I didn't have to buy an outfit, and, best of all, it wasn't my party πŸ‘. 

Great weather, good view
Breaking with the common custom of having a sit–down dinner, the committee had chosen a casual, low key venue.  We selected a local theater cafe with an outdoor deck, good food, good accessibility and alcohol. Not wanting to have a big, formal do–dah, the event dress code required only shirt and shoes. After all, this wasn't the Academy Awards.  It seemed like people dressed comfortably (no glitz in sight), and that was the goal.  Scheduling the event for the last weekend of September was gutsy, but the unpredictable northwest weather cooperated that evening and the next day.  No rain, not too cold, not too hot–just right...πŸ˜….

The turnout
I wasn't the only mobility–impaired person, and had many years of getting over some of my vanity.  I was ready for this humiliation bullet.  Many people had their own life lemons with which to deal, and others to whom another's lemon just didn't matter.  I did, however, get my nails done and my gray roots colored.  There is a limit to how much vanity one can ignore**. πŸ˜‰

A 50th high school reunion can a momentous event to some, a non–event to others.  In the course of 50 years, everyone has life's ups and downs with which to deal.  Overall, the turnout was great, but it did take a little coaxing of fence-sitting alums who weren't sure that they wanted to attend.  The committee members just wanted people to come by any means possible.  We found an engaging article about ' reunion reticence' written in the New York Times and published it on our Facebook Page.  Excerpted from it:
"On the surface, high school reunions are a chance to reminisce, reconnect and discover who has been posting deceptively flattering photos on Facebook. But the collision of past and present is also a time of self-reflection, measuring who you are against what you wished for yourself and what you think your peers expected of you.

For some, reunions offer vindication. For others, they’re a dreaded reckoning. For many they really are just a chance to catch up. But what most everyone has in common is some level of anxiety, as the insecurities of the past get thrust into the present."
As retirement nears, people’s lives start to resemble each other’s once again. There’s less drinking and more talking, with conversations focusing on “remember when.” People find value in being around others they knew when they were younger because it makes them feel younger.  The 50th reunion is often the most well-attended. There’s a sense that this could be the last time you see these people. Plus, people go because they are able to attend. Like the 40th, nostalgia is strong.
High-school reunion anxiety: Facing the old you

Reconnecting and eating
The Sunday picnic the next day afforded more opportunity for reconnecting with former classmates, eating potluck contributions and leftover food from the evening before.  I had hoped that we had planned an enjoyable weekend for classmates, but was struck by the number of spouses who also seemed to be having a good time. They may have been dragged there and just were being good sports, but I didn't see any indication of it.  Between the two events, about a third of graduates came and (I think), were glad they did. 

The lesson: With Earl pushing, Thelma and I spent the weekend back in time. We were definitely a more fun and interesting group at 68 than we were at 18.

*Previous post:  Where's My Village?
**Previous post:  Scooting While Vain

Monday, September 25, 2017

East Coast Roadtrip

East Coast Fall foliage

It had been more than two years since we had ventured on our first roadtrip*.  It was time to move from using a walker to a wheelchair.  That was a particularly difficult humiliation bullet to bite.  I thought I had accepted the inevitability of progression, but I found myself whining, "No-o-o-o!"  Was this the end of the road before absolute immobility? Were my traveling days over?  More importantly, would I strain Earl's back and were my scooting days over? 😱

As with previous transitions, logic and practicality won out.  I was so freakin' slow with a walker. I didn't appreciate how frightening my precarious balance was to others.  Finally, I knew an injury was the bigger personal threat and was to be avoided at all costs.  Thelma and Louise ** became a permanent part of my next chapter.  Wheelchair use gave me greater mobility and freedom than I had expected.  It didn't impact my travel, scooting, and I didn't "break" Earl. πŸ˜…

Oh, please
So we boarded a plane and flew to Asheville, North Carolina to begin our East Coast roadtrip.  We had previously been to many major big cities on the east coast (New York City, Philadelphia, Washington DC, Atlanta) and we wanted to see new places and more rural areas this time.  We even put Mt. Airy on the travel itinerary.  Mt. Airy is the town on which the fictional Mayberry was based.  Boy, did the town ever capitalize on that 60s TV claim to fame! There was the Andy Griffith Museum, Floyd's Barber Shop, and Aunt Bee's Bakery.  Really?

Lightweight Thelma (a transport chair) was easy to get out of a rental car and much faster to get into any restaurant or site that captured our attention.  If it seemed like we would cover some ground exploring, out came Skeeter.  Asheville had a funky art scene and an interesting main street, but the sidewalks weren't 'Skeeter friendly'. It was a short adventure. Oh well, live and learn...😐

Blueridge Parkway
A major destination that called to us was the Blue Ridge Parkway, so we headed out.  Apparently, it's a popular cycling destination as well.  Since the weather was good, we saw several cyclists heading up the mountain.  Earl was a bit wistful and I knew he wanted to be out there, but he coped and kept driving.  What Easterners would call a "mountain", Westerners would call a "hill".  But, to a cyclist, elevation is still elevation.  Aside from the rural scenic vistas, museums, and 200 year old buildings, there were Gaps, Hollers, and Gulches all along the way.  That's how everything was originally named.

Shenandoah/Appalachian Trail
The Shenandoah Valley had many confederate museums, civil war history and battlegrounds.  That was one thing we were looking for, but we weren't prepared for the number of people who still referred to the "Northern war of Aggression".  Picking our battles carefully, we kept our Yankee mouths shut.  More vistas and Earl hiked a bit (a very little bit) on the Appalachian Trail.  Skeeter, Thelma, and I stayed in the car.

Niagara Falls
We thought that everyone had been to Niagara Falls except us, so we included that in the travel itinerary.  We also had the impression that it was an over–hyped tourist attraction.  It wasn't. Not only were the falls breathtaking, but the Canadians have done a fantastic job creating an accessible walkway that takes advantage of the falls.  Sure, it was crowded and touristy, but Skeeter and I were happy. πŸ‘

Seneca Falls

Nestled quietly in northern New York, was one of the highlights of my trip—Seneca Falls, birthplace of the women's rights movement. Again, it was very 'scooterable'.  Between Skeeter and Thelma, I was able to hit all the major sites.  I never thought of myself as an activist, but I found Seneca Falls to be fascinating and emotional.

Lake Placid
The town of Lake Placid (very scooter–friendly) is actually along the scenic Mirror lake. Another travel highlight was visiting the Olympic Training Center skating arenas—the 1932 Shea arena and the main Brooks arena . Earl and I talked about the skating history, realizing that there are probably few younger people who even know who Sonja Henie was (Olympic figure skating gold medalist, 1928, 1932, 1936).  In fact, there are probably two generations who think the 'Miracle on Ice' refers to a Disney skating production. Trying to take in all the 1980 Olympic venues, we drove up to Whiteface Mountain, but didn't have time to see the bobsled and jump areas.  However, we were able to see the speed skating track where Eric Heiden trained, an outdoor oval at the adjacent high school as part of my scooter tour of downtown Lake Placid.

We had also never been to Montreal.  The second largest city in Canada, it is beautiful.  But while it paid some attention to accessibility, we didn't find it to be very handicap friendly.  In all fairness, there's only so much you can do in a city trying to preserve over 300 years of history and a European influence.
Many businesses have only stairs, sidewalks are not beveled well at intersections, if at all.   Skeeter and I never tipped over, but there were a couple of times that scared the crap out of Earl.  The US is ahead of most other cities with regard to accessibility.  Crowds walk 3-4 abreast, tune into their phones, and ignore others (a global issue).   One evening, Earl and I made reservations at a restaurant that promised great grilled octopus.  Skeeter managed the narrow, bumpy sidewalks, but the restaurant had steps into it 😲.  Rather than lose paying customers, the restaurant proprietors just walked me to the table and carried Skeeter. 
I scooted through the old port built along the St. Lawrence River and the city's namesake, Mount Royal.

The final stop before flying home was Vermont.  Our friends told us Burlington was reminiscent of Portland in the 70s.  They were right, although the East Coast does a better job of preserving old historic buildings than the west coast.  Our definitions of what constitutes 'old' do differ. We consider building old if they're 150 years.  On the east coast, πŸ˜‚.
They live in the capitol, Montpelier. Their home was very accessible and they had wine.  Earl had to do more pushing of me and Thelma, but it worked.  Although we were a couple of weeks ahead of the scheduled fall colors, we enjoyed the turning foliage in the Adirondacks, Appalachia, and New England. The east coast is heavier on deciduous trees and light on evergreens.  In contrast, the west coast is heavier on the evergreens, and light on deciduous trees.  Maybe it wasn't peak color, but it was still a magical part of the trip. 

The lesson: The East Coast maybe not as handicap friendly as the West Coast, but we had a will, so there was always a way.

*Previous post: Road Trip With Disabilities: Part 2 of 5
**Previous post: New Wheels: The 'girls'

Wednesday, August 30, 2017

Can You See Me Now?

 I only had Skeeter for a few weeks when our youngest grandchild pointed out that I didn't have a helmet* 😳.  A year later when I acquired my trike, I also needed the helmet for that.  This Christmas, Earl found a new helmet on the web (of course), a product of a 'Kickstarter' project.  He felt this might enhance my safety when venturing out and would make a good gift.  I didn't really need a new helmet, but this was so cool (and high tech **).

With flashing LED lights, it's visible from a long distance—actually, any distance. I may look ridiculous, but that ship sailed long ago ***.  It really looks and weighs about the same as any bike helmet.

I have long wanted a way of turn signalling that didn't involve hands (not many people even remember what car hand signals are.  Neither did I want to be confused with someone having a seizure or needing assistance.)  The helmet comes with an indicator that mounts on Skeeter's handle bars.  πŸ‘

I should get something for advertising.  Just in the last week, Skeeter and I have been stopped by people who saw me coming a mile off and wanted to buy a helmet for their spouse/child/mother... Most of the promotional pictures are of bike riders.  I wonder if the Lumos Helmet company ever thought of pursuing the demographic of people with disabilities. 

The lesson: If a driver still can’t see me with the new helmet, they are either blind, having a heart attack or trying to hit me.😱
Maybe I could get a discount code from the company.

*Previous post:  Why Doesn't Grandma Wear a Helmet?
**Previous post:Hi, I'm Tammy and I'm a Tech Gadget Addict
 ***Previous post: There Are No Perfect Glasses