Scooter Saga

When you have disabilities, a sense of humor is important. I wasn't in the habit of laughing during intimate moments with my spouse.  Now that it's essential, more's the pity.  Given a choice of looking at sex as amusing or pathetic, I'll go with amusing. So many issues conspire to make one gravitate toward celibacy. Ataxia often has overwhelming fatigue as a symptom and I would have to say, that's a big one. Although I don't have small children, a schedule or work stresses, I do need my daily nap. I've come to appreciate the benefits of good sleep, so "dead to the world" best describes me after 9 p.m. When Earl comes to bed, I'm usually already asleep—even though it's 9:15 p.m.  There's one of the issues–but then, I have to be honest and admit it always has been. The good news is, I don't have to deal with pain; I'm not certain I could cope with that. The bad news is, we're in our sixties and our parts don't mo...

A friend asked, "How is your book going?  What was the outcome of the phone meeting with the consultant?" ( questionnable p unctuation) "Fine, good" was about out of my mouth, when I thought better of it.  The truth is, it's OK–not great, but OK.  I realized that blogging is quite different from writing (duh).   Whil e s tory telling may be a strength, formal writing is not.  I wouldn't ( c ontraction) say I'm a professional editor's worst nightmar e— maybe just a bad dream.  I thought I was doing well by cleaning up my language.  I wanted to be a cooperative client writer, not waste people's time, maximize the potential of my computer software, correct glaring typographical errors and misspellings before relying on humans (run-on sentence) . I was also too close and familiar with the content to dependably edit myself.  Certainly Heidi and Earl had been editing continuously during the past two years, but once I started reorganizing c...

Traveling with a motorized scooter has its own challenges, but it can make the difference between going somewhere or not. Most of the time, (not always) I'd rather go.  Fortunately, Earl has the strength and willingness to deal with Skeeter and doesn't expect a tip.  Cab drivers are also happy to help and I've found people to be kind and accommodating when asked. When our brothers and sisters-in-law planned to celebrate their 50th anniversaries at the Grand Californian H otel in Disney land , there was no question about taking part.  They were inviting the entire extended clan and this was going to elevate the "Family Vacation" to a whole new level.  An opportunity to be at Disneyland with our grandchildren was a big draw.  In fact, with regard to any amusement park, the only draw. Disneyland, while expensive, is very ADA compliant and there aren't many places a guest can't go with a walker, wheelchair or scooter-even some rid...

I am heading toward publishing a book .  It involves going back and fleshing out some of the earlier posts, reordering, etc., but a reader won't see much change from blog to book .  The most significant change came when I tried to get legal publishing rights to images.  To make a very long story short, it didn't happen.  I thought the low resolution images that Google found were in the public domain.  They're not.  No one knew who owned the rights to some of the older images. If I was able to track down the original author, it was most often too expensive.  So, if it's not mine, it's not included.  Bummer!  Some of those images were funny . Heidi is my primary editor because 1) she's a good editor/writer 2) she not only understands me, but isn't hesitant to hurt my feelings if it means improving the story and 3) she has an eye for the big picture.   Earl's my secondary editor as the detail guy who prefers not to hurt my feelin...

Like it or not, Heidi and I are in this together ("Thanks, Mom" post) .  It's very different for me at 63, retired, grown children with families of their own, driving is still an option.  Ataxic, but considerably less affected than me, she's a young woman with young children, and spends a good part of her time in the car (soccer games, piano lessons, martial arts) .  My household has two adults, hers has two adults and two children in a very active phase of life.  I have all the time in the world to nap, read, or compute.  She is chronically sleep-deprived and committed 24–7.  I have lunch with friends, she hosts play dates.  I worry about falling in the shower while she worries about getting time for a shower.  Different generations, different concerns, different needs. So what started the Mother-Daughter show?  My physician invited me each year to demonstrate how SCA manifests on a neurological exam to her medical school class.  ...

A common question I get is, "Do you still drive with your Ataxia?"  The answer is yes–sort of.  I drive familiar, short routes (breakfast, hair appointments, etc.) , in the daylight .  Other times, I rely on Earl, Sandie,  family and friends.  But if there's a scooting opportunity, I scoot.  When the time comes that I don't feel safe, I hope to turn in the car keys before they are taken away.  However, I have to admit it'll be a struggle when they "pry them from my cold, dead hands" (well, scratch the dead part) . But it will be one more humiliation bullet, no matter what. I don't drive exactly like an old lady, but close.  I'm more cautious.   I avoid the stereotype often attributed to elders.  First of all, I'm tall, so my head shows way above the steering wheel.  Second, my hair color is blond (blue doesn't become me and I don't gray well; my gray hair would look like dirt).   I follow the speed limit, which may be s...

Whether it's poop, pee, gas, snot or saliva––I'd like to choose when, in whose presence, and where it exits.  Ah well...such is the life of an Ataxian.  Fortunately, I have understanding family and friends.   Another reason I love Skeeter–she doesn't care how gross I am.   I watched a movie the other night (of course).   Harry Belafonte's character and Anthony Hopkin's character were having a drink and trading barbs about the effects of aging. Harry Belafonte:  "At least I don't have to get up three times a night to pee." Anthony Hopkins:  "At least I get up." I'm not quite that bad, but I've come to look at the bowel and bladder more globally, like the nose and throat– increased sensitivity . I haven't had major issues yet, but I sense they are coming.  Perhaps it's advancing age or the Ataxia, but I've noticed increased bladder sensitivity and decreased capacity. I've always had a capacity less than ma...

As our annual family vacation approached, Earl asks, "do you want to take Skeeter or your trike?"  It was only to the Central Oregon Coast for five days. "Both.  We can load them in the van and, being inanimate, they won't argue about sides, who's touching who or ask if we're there yet." Tammy, the turtle Parking lots work The first day there, it was just Heidi, Michael, Sarah, and Kyle and bike riding was the activity of the day.  We had always gone to Central Oregon where bike riding was a major deal–not so on the coast.  Parks everywhere–not a decent bike path in sight.  But since six-year-old Kyle was breaking in a new bike, a big parking lot would do.  The setting was beautiful and between a dune and a lake–hard to complain.  Besides, I'm used to going around in circles and fortunately, the grandchildren are still biking at my speed and skill level. They're also at that great age where everything is fun–that's not going to...

Actually, I don't.  Earl makes a good living, still likes the work and is more than happy to support himself and this high maintenance woman on one salary.  That said, I worked much of my adult life as a registered nurse, retiring prematurely because my Ataxia kept me from doing the work. Certainly dealing with a progressive neurological condition had its own issues, but suddenly not working outside the home was a difficult adjustment. I just couldn't figure out what the problem was.  I didn't need a job, income wasn't an issue. I retired sooner than I had planned, but still in the expected time frame range.  Not being much of an involved parent of adult children, I didn't expect to be attended to or kept occupied.  Then I got an email from a friend and former work colleague.  She referred to my role at the nursing school where I spent the last 17 years of my career.  It hit me–it wasn't an outside job or a salary, it was feeling competent I ...

Disclaimer:  I try to adhere to the dictum, "If it's not about Skeeter, it didn't really happen, and it's not funny, don't post it."  But, somethings just aren't funny and it is my blog after all.  This is neither funny nor about Skeeter–just important (I think).  Oh well–In for a penny, in for a pound. My husband had a co-worker commit  suicide  and it threw him for a loop.  I could tell Earl was dying  (OK, poor choice of words)  to ask me if I'd ever thought of it, but also afraid of my answer.  So I sent him this email instead of saying, "Well, hell yes!" and thus stifling any chance of a dialogue.  Given that we sleep together, an email may seem ridiculously impersonal, but it gave me time to think, write,  and  think .  Earl had time to think, read,   and think . Earl, I know your friend is on your mind, wondering how her plan could have been missed. How bad could life have been?  Could you ...

So unattractive Ah, the dreaded cough.  Aside from the difficulty in swallowing that may occur with Ataxia, many unaffected people also fear the hacking that comes with advanced age.  I was surprised to discover I wasn't alone in wanting to avoid any undesirable noise emanating from my throat. Like falling, it tends to elicit attention, even when it's just a "swallowing down the wrong pipe" event.  Of course, it usually happens in public or the middle of the night– oy .  I just don't want a "cough" to be heard as a "hack".  I'm only in my sixties! The progression of the dreaded cough starts with a little tickle in the back of my throat.  I give a discreet, throat–clearing "ahem" with the hope that it will dissipate quickly.  Then a single, but real, cough (maybe two) .  "Please, please–now go away." Finally, it grows into a full-fledged coughing session and, by then, I have surrendered. To hell with it. Cou...

Depressed?  I'm not depressed.  If I was depressed, where was the “black cloud”, the pain, the inability to get out of bed that I had heard about?  Degrees of depression never occurred to me.  Life just seemed like a lot of work, visions of swimming through gelatin, my worldview was kind of flat. Surely I could mind–over–matter that. For a time after my diagnosis, I tried every non-pharmacological treatment for depression I could think of.  It didn’t help.  I had resisted resorting to prescribed antidepressants because I thought my depression was specifically due to the onset of my Spinocerebellar Ataxia and recent retirement, and consequently, not responsive to pharmacologic treatment.  I still slept well (neither too much or too little) , hadn't gained or lost weight, maintained a healthy appetite and didn't feel like biting anyone's head off–too often.  But, focusing on people who were worse off and how fortunate I was not to be: in pain,...

Lucy (1998–2011) One of the first things I did after my early retirement due to Spinocerebellar Ataxia, was get a dog. We'd always loved dogs, especially Australian Shepherds, and still missed Samantha who died, at age 14, in 1995.  I knew I couldn't move fast enough to manage a puppy, so my criteria in choosing a suitable  canine  companion was that she be less than 40 lbs, less than 4 years old and definitely  not  a fur shedder. Elizabeth went with me to the Humane Society where Lucy and I found each other.  She weighed 55 lbs., was seven years old, and was a champion fur shedder.  Oh, well... Lucy became my constant companion, preferring to be in any car to being left at home.  But sometimes, it was necessary.  I had to go to Northeast Portland to deliver my old laptop to a buyer.  Lake Oswego to Northeast Portland, at rush hour, is about a 30-45 minute schlep.  It was hot outside.  I decided...

When you spend most of your time in the house, for whatever reason, you will get the lion's share of the door knocks.  My customary response is not to answer it. Most of my friends, knowing about my Ataxia and that it takes forever for me to get to the front door, either call first or come prepared to wait–forever. Ignoring the knock at the door  can be an effective strategy in avoiding the unwanted visitor, but it doesn't work if you're outside, so it's best to have several different defenses. I've had to work on my "I'm not interested" skills.  Trouble is, while some people have no difficulty saying "I'm not interested", I do.  I just want everyone to like me (another disability). My son and husband love the  door to door  game, their specialty being the student soliciting donations for a non-profit.  But Jason has a job and his own family home.  Earl usually gets home after the door to door people have come and gone. They miss a...