Scooter Saga

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...

Skeeter and various other devices (computer, tablet) are my companions in solitude.  I'm still aware of the loss of coordination  (speech, gait, hands) , but they aren't. It can be easier to be in the company of inanimate objects. I don't need to give them any thought or consideration.  Ironic that that's important to me, given that no one in my life makes any demands on my time. I've come to differentiate peaceful solitude from lonely isolation–I don't think I grasped the difference when I was young.  I always thought the more people around, the better–even as a shy child.  I still prefer being with people and enjoy social occasions.  My important peeps know about my Ataxia and don't care. I'm grateful for that.  But, I don't foresee a time when I don't think about how my struggles appear to others, however close they are.  In solitude, I can choose to not care. Solitude may afford me the opportunity to figure things out on my own ...