Progress Report

After several delays for various reasons (bronchitis being one) I finally got the spinner knob* installed on the steering wheel. It has made all the difference! I don’t know how people can turn the wheel one-handed without one. So now I am officially driving with hand controls! (My constant mantra: “Down go, forward stop, down go, forward stop.”) I’ve made a half dozen trips around town using them exclusively, including one through the car wash – not easy getting lined up on those narrow tracks! The only thing I haven’t tackled yet is parallel parking. I started to do it once and chickened out. I just don’t have the finesse yet that it takes to ease the car into a narrow spot with obstacles on both ends. Anyone want to volunteer their cars so I can practice?? I did well with one incident when I had to hit the brakes in a hurry – I don’t think I even lifted my foot.

I realized that Laurie will also have to figure out a new way to do her phantom braking in the passenger seat.

*A little more history on the spinner knobs: besides "suicide knobs," they’ve also been called “necker knobs” – the driver could use one hand to drive and the other to feel up the passenger – and “titty bangers,”  for obvious reasons.

We ran into some issues with the scooter lift for the Element. We decided early on against an exterior model because of the extra length on the back of the car (I would never parallel park!) and the weather issues. Turns out the power lift we thought would work (“we” meaning us and the
salesperson at All-in-One Mobility) won’t work with the tailgate, so we have to spend an extra thousand bucks to get one with a telescoping lift head. Disappointing, but it might be best in the long run. The manually operated one might have been difficult to manage in the years ahead. This one should be really easy for me to operate by myself so I can be independent when I want to take the scooter out on an adventure by myself.

And speaking of scooters –while we’re spending all this money, we decided to go ahead and upgrade the scooter, as the current one has developed some electrical problem that would cost more to fix than we feel is worth it. So I’ll have a brand new scooter when the lift is installed (within a couple of weeks). Now Liza won’t be able to keep up with me! The current scooter has been slowing down – yesterday I wasn’t sure I’d even make it home, it almost came to a standstill a couple of times, on ½ a charged battery. The new scooter also has a higher ground clearance, which is really important to me on these bumpy sidewalks (I’ve gotten high-centered a couple of times), more ergonomic accelerator, more leg room and- the real selling point -interchangeable panels, so it can be blue one day, red the next and silver another day; so important to color-coordinate my scooter with my attire, you know - fashionista that I am.

Scootography

I love taking photos - of flowers, birds, kids, odds and ends. I started getting serious about photography 3 years ago, just before I retired and then was gifted with a really nice Nikon camera. I was out taking photos every day, wandering all over town: at the riverfront, on the tram, in junk stores, at the carnival after hours - I even took photos inside the car wash one day! I posted on my photo blog almost every day.

And then I stopped fairly abruptly when it started getting too difficult to get around. My balance got so bad that I couldn't steady the camera unless I was sitting down. The walker helped but I couldn't go very far, and I can only take so many photos of the irises and columbines in our own yard. It was pretty depressing - I need creative outlets.

Enter: The Scooter. And Scootography was born. Not only has my range vastly increased, I'm already sitting, so balance isn't an issue. And I'm often eye level with the subject I want to photograph - bees, for instance (you can click on all these photos for a larger view).

Our neighborhood and the ones surrounding us are wonderfully colorful and quirky - not many groomed lawns and arborvitae hedges around here - so I have an endless supply of material to work with. And as soon as I get that scooter lift installed in the Element, the world will be my oyster!

Here's a sample of today's scootography:

Dahlia

Dahlia

Nasturtium

Rose of Sharon - how perfect is that center?!

Black-eyed Susan

I love being back behind the lens! 

My photo blog is here - I haven't posted very much to it lately, but it too will be back in business soon. 

Parking Privileges

Yesterday a crew from the city came to repair the parking lines in front of the house. I called in a couple weeks ago because the strips were worn off and were tripping hazards in a couple of places (they don't paint the lines, they use an industrial tape).

And I realized what a privilege it is to have this dedicated disabled parking spot right in front of our house. Not that it's MY spot - anyone with a disabled placard can use it, but that's only happened once. When we had the addition built on the house, we gave up off-street parking. We're close enough to Hawthorne that weekend parking can be a premium, and there were nights we'd have to park a block away from the house, which is aggravating for a person with mobility challenges.

I called the city a year or so ago to inquire about residential disabled parking spots - I'd seen them on other streets but didn't know what the process was to get one. Turns out, it's fairly easy. I sent them a letter explaining why I needed it and included a photocopy of my disabled parking permit. A few weeks later, a crew showed up, put down the strips and installed a sign. They didn't even ask where we wanted it, but they put it exactly where I was thinking it should go. And it didn't cost us a dime.

The crew of four (yes, four!) who came yesterday to repair it were quite entertaining for the three-year-olds who were here - OK, for the adults too. (Of one of them, Ms. P remarked, so all the neighbors knew, "He has a Mohawk!") First they blow torched the old tape off - showy! - and then laid down the new and rolled it flat. They were done in a matter of 15 minutes.

And they were a full-service crew. One of them helped round up Liza who, in all the excitement, made a break for it out the front door and pranced up to 38th and beyond. Apparently it was past time for her daily walk.

I don't take for granted the privilege of a disabled parking permit, allowing me to park anywhere for as long as I need for free, and usually getting me pretty close to the entrance of any store or business I'm going into. And this parking spot is a gift I don't take lightly either. It's another one of those things you can't appreciate until you need it yourself.

Last week, Gwenlyn added this sign to my special parking sign. Sadly, someone walked off with it before I saw it.

What Does "Accessible" Mean to You?

We just returned from a trip to Washington State where we stayed in a hotel for a couple of nights. When I made the reservation, I decided to book an ADA room. (ADA = Americans with Disabilities Act – guidelines and laws that must be adhered to by businesses to a greater or lesser degree.) I did this mostly for the bathroom accommodations, which include grab bars and a shower or bath with some helpful accessories.

So imagine my surprise when we discovered the very narrow space between the beds and the desk and dresser. Had I been in a wheelchair, I wouldn’t have been able to get through that tight spot, which led to the refrigerator. And to the microwave sitting ON TOP of the refrigerator cabinet. And to the coffeepot sitting ON TOP of the microwave. Because I can stand, I could reach the coffeepot (a good thing, or heads would roll), but if I were unable to stand, I’d have been coffee-less and eating cold oatmeal. There was also the matter of the bathroom floor, which was very slippery.

Yesterday I received an email from the hotel asking me to take a survey to rate my experience. Boy howdy! I rubbed my hands together with glee. The rest of our hotel experience was pretty pleasant, so I didn’t have to give them all negative feedback, but In the comments section, I wrote pretty much what I wrote above. Here’s the response I got:

Thank you for taking the time to tell us about your experience at the Lacey xxxx. I am sorry that your stay did not meet your expectations; please allow me to express my sincerest apologies.

Terri, it is extremely difficult to know or anticipate exactly what a person might require of an ADA room. A person with a hearing or speech issue would certainly have no problem with the location of our microwave or coffee maker; whereas a person in a wheel chair might. I do like your idea about "test driving" our room with a wheel chair. My mother-in-law has one...and I do believe I will bring it in and check our room layout.

Your satisfaction and continued trust in xxxx Inn are our top priorities. We look forward to showing you that we are working hard to make sure each visit meets your expectations and our high standards.

Sincerely,

General Manager
xxxx Lacey

Well, I do appreciate getting a somewhat positive response so quickly. I found his comment about what different people might require of an ADA room a little odd though – true, a deaf person wouldn’t have trouble with the location of the microwave, but seriously? To have not considered how a person in a wheelchair might get around in the room seems a bit off-putting and not a genuine attempt at making the room accessible. I haven’t researched it fully yet, but I’m pretty sure that if they’re calling it an ADA Accessible room, it has to meet certain criteria.

A few weeks ago, Nan and Gwenlyn and I went for a walk in my neighborhood. (And by walk I mean they walked and I scooted.) Gwenlyn gave me a hard time at first when I whipped out my notebook and made a little map of which intersections didn’t have curb cuts. But after a few blocks, she got it. When we came to an intersection without one, I had to go as much as half a block to find a driveway I could use to get into the street, then scoot up the street to the intersection or to another driveway across the way to get to the other side. “I had no idea,” she said. Well, most of us don’t until we’re faced with it.

My pals suggested I get in touch with the city to see if they have a map of intersections in my neighborhood with curb cuts. I did and they do – or at least, they graciously put this together for me.

Unfortunately, I need a magnifying glass to decipher it, and even then only the major streets are labeled. So it’s back to my own drawing board as I travel the streets and make notes. Maybe I’ll write my own scooter guide, something along the lines of Walk There! 50 treks in and around Portland and Vancouver. Perhaps Scoot There? Roll There?

My point being, in this long winded diatribe: I’m sure people’s intentions are good, and prior to my own experience, I was just as unaware as the next person of what it’s like to require extra space or a curb cut or coffee gear within reach (seriously, don’t mess with my coffee!). We’ve come a long way in this country toward making areas accessible to people with disabilities, but I think we can do a lot more. As an example: there are disabled parking spots in front of our neighborhood library – yea! – but no curb cuts for a wheelchair once it’s on the ground – a person would need to wheel in the street to the nearest driveway. I realize a lot of these things require money, but some of them just require common sense.

Here's an idea:  a dedicated day when everyone uses a wheelchair or scooter for 8 hours. I think it would be a real eye-opener.

Look Ma! No Feet! (or Learning to Drive with Hand Controls)

Yesterday was a big day: I had hand controls installed on the new rig. Yet another step on the disability path. My dear friends Gwenlyn and Nan went with me, partly to keep me company during the four hour installation process and partly to be my support team as I learn how to drive in this whole new way.

It’s appropriate that Nan was along on this venture, since she was a passenger in my car the night it became evident that I needed to think seriously about hand controls. (Her fingerprints can still be found embedded in the back seat of the Saturn.) We were leaving a house concert late at night; I was driving down the steep driveway onto the steep gravel road and thought my brakes had gone out – they weren’t responding to my repeated foot pressing. About half way down the road I realized that my foot hadn’t even been on the brake but somewhere to the west of it. The lack of feeling in my feet due to neuropathy had manifested one of my worst nightmares.

After our heart rates had returned to an acceptable level and we thanked goddess no one had been in the road, we discussed my options, Because Laurie doesn’t drive, if I become benched, getting around would be extremely challenging. We can't afford a chauffeur, so the next day Laurie and I started investigating hand controls.

As soon as we bought the Element, I made an appointment for the installation. I knew there would be a bit of a learning curve – after all, I’ve been driving with two feet and two hands for 43 years – but I was assured that it was pretty easy to catch on. What I didn’t think about was that my left hand will be on the combo accelerator/brake lever and unavailable for other duties, so I have to steer with just my right hand. This is not an easy task! Plus there are so many other things I need to be doing with my hands – tuning the radio, adjusting the AC, petting the dog, drinking water or coffee – and how the heck am I supposed to parallel park???

Remember the old steering wheel spinner knobs from days gone by? Did you know they’re illegal in most states now unless you’re a disabled driver? (They’re called suicide knobs now, apparently for good reason.) I remember picking one up at the auto shop and popping it on the steering wheel. Now I will need a doctor’s order and a chunk of change to get one installed, but it will make it so much easier to turn the steering wheel one-handed.

I spent about 20 minutes practicing in the parking lot after the installation was complete. Then I felt (sort of) ready to get on the road with Gwenlyn as my co-pilot (and kudos to her – I didn’t see one white knuckle or hear one “Oh Shit!”). I decided to stay off the freeway and drove a comfortable 35 mph most of the way home. It was a mostly uneventful trip - even though it was rush hour -  and I got the hang of it, but don't yet feel confident that I could handle any driving situation.

We have a road trip this weekend. I still have the option of using the foot pedals and I may opt to do that for this trip and get more practice in empty parking lots. The experts say that once you've decided to use the hand controls, it's important to commit to it and not switch back and forth. Today I'm feeling a little commitment phobic.

And now a little promotional message: If you're in need of any mobility products, I highly recommend All-in-One Mobility. They know their stuff and they are wonderful to work with.

Oui, We Wii

I’ve had a Wii tucked away for a while now. I got it last fall, thinking it would be a great way for me to get some exercise at home in an entertaining way. I’m not a gym type AT ALL, and finding any kind of exercise that keeps me interested and motivated has been a lifelong challenge. And now that my mobility is so compromised, it’s even more of a challenge. There’s the warm water therapy pool that I can’t seem to get myself to; there’s chair yoga, but every time I do it I grieve for the wonderful yoga sessions I used to have when I could stand and balance and get up and down from the floor without major assistance, so I end up in an emotional puddle half way through each session.

When I first got the Wii, I set it up and tried out a couple of games. Bowling was fun and gave me a bit of upper body exercise and some balance challenges. Then I chose tennis. I went through a period twenty (or was it thirty??) years ago when I played a lot of tennis and racquetball and loved them to bits. I was even pretty good at the racket sports. So Wii tennis it was. I played a few games, being careful to strap the remote to my wrist so it wouldn’t go flying across the room. Liza was very curious about what I was doing and nudged closer and closer to the edge of the couch. I was getting good! And then SMACK! with a brilliant backhand I hit Liza in the face with the remote about as hard as I could. She let out a yelp and cowered in the corner, crying, in obvious pain. I thought I must have broken her jaw or at least knocked some teeth loose. I was devastated. I think I was more traumatized than she was; I held her and sobbed. Laurie had to comfort me (though she was confused at first – when I told her I’d hit Liza she thought I meant Liza’s Wii avatar, not the real dog!). So every time I thought about a Wii session, it’s triggered a bout of PTSD. At least that’s the excuse I’ve been using. (Liza was fine, by the way - I'm sure she had a headache, but no lasting effects. Although, brain damage could explain some things....)

Due to some rearranging in the cottage, we got rid of our clunky old TV and bought a new flat screen, the idea being it’s fairly portable, we can use it in the house or the cottage, and it’s just right for the Wii. The first week or so I was delighted to be able to view Netflix movies by streaming them through the Wii. Laurie asked me every few days how it was going with the Wii (she frequently encourages and subtly prods me to exercise). I’d run out of excuses. I pulled out the discs, dusted them off and played a few games of bowling, baseball and yes, even tennis. (Liza curled up in the corner of the couch, far away from me and my antics.) There’s nothing really skillful involved in these games, but it does give me some upper body exercise – I can do them sitting or standing. But I can see how losing interest in these games wouldn’t take very long.

Enter: Wii Fit, which includes a balance board and four training modes: balance games, aerobics, strength training and yoga. The board, which you stand on while doing the body tests and exercises, "talks" to the Wii console to measure things like BMI, actual age, weight, balance and posture. I had some trouble with the initial setup – it kept asking me if I was fidgeting while it was trying to get a reading. Fidgeting? No, that’s my normal way of standing. (I don’t think the Wii knew I was using a cane to stand either.) I was finally able to hold still long enough for it to get the information it needed. Then it put me through a battery of balance tests, which I’m supposed to do daily to track my progress.

I was exhausted by this time, so haven’t gone on to do any of the actual exercises, but I’m looking forward to that hula hoop! I was curious if there was information about using Wii with disabilities. I was happy to find these posts by a woman who has some direct experience with it – she explains some of the limitations and demonstrates modified exercises with the balance board.
http://flashsays.com/2011/02/02/wii-fit-disabled-part-1/
http://flashsays.com/2011/02/02/wii-fit-disabled-part-2/

I think it would be really cool if someone developed a Wii disc specifically for people with disabilities.