Wheel-Tech, Part 1

This blog was originally written for CAPTIVATING Magazine  and appeared in the most recent edition. Used here with permission.

Wheels and a chair

Close up of a wheel with silver rim and spokes, and narrow, bright blue tires. In front of the tire is the lever to lock the wheel.Why do we put wheels on chairs? It makes them unstable and likely to roll.

Over a quarter century of living on wheels, I’ve learned a bit, though I am not a seating expert. (That is a disclaimer, if you didn’t recognize it carefully camouflaged there.)

Living near Orlando, Florida I see lots of different mobility aids. Some are awesome, but some are not. I recently saw a family struggling when their wheelchair was not up to their needs.

The young mother was rather obviously a full-time wheelchair user. Her chair was a garden variety, hospital type mobility aid. The father was pushing and trying to hold the hand of a child whilst the mom had a smaller child on her lap. They were struggling.  What a difference a more appropriate chair would have made to them! How do we know what we need? That is where this mini-series comes in. With some basics we can be prepared to ask questions and advocate for ourselves.

In Part 1 of our wheelchair primer let’s talk a bit about the most defining part of a wheelchair, the wheels. In Part 2, coming soon, we’ll examine the chair. Remember that a  modern wheelchair is essentially a bicycle. If we are going to ride it occasionally, or rent it on vacation, a beach cruiser might be what we need. If we are going to ride it all day, every day, and commute with it, we need something else entirely. The most defining part of the wheelchair is the wheel, or wheels since there are four of them.

Plastic spokes on plastic wheels. You get the idea.

2 black wheels with black, plastic spokes and medium width, black tires.The wheels pictured here came with my handcycle “bike.” I have since replaced them with something lighter, which makes the “bike” easier to propel. These are the basic wheelchair wheels. They are rather heavy and harder to roll. You will find these on most “off the shelf” wheelchairs. This type of wheel was on the chair I used on our example.

 

Carbon fiber, composite, and some titanium.

2 black, carbon fiber wheels with red spokes, titanium hand rims.At the opposite end of the wheel spectrum are ultra-light wheels. They are paired with  ultra-light, custom chairs. These are easy for the person who rides in the chair or a  family member to handle and require far less energy to roll. In fact, an ounce off the wheel weight is effectively a pound less to push, so a difference of 32 ounces, for example, makes a huge difference to the person who is supplying the energy.

In the middle, and the most common wheels you will find on a chair made and set up for the individual rider are the shiny, aluminum wheels and steel spokes that are shown in the top picture. These are seldom found on off the shelf wheelchairs and are practical for everyday living.

Put on some tires and get moving

Close up of a wheel with silver rim and spokes, and narrow, bright blue tires. In front of the tire is the lever to lock the wheel.

The bright blue tires in the top picture are rubber and feel like I’m pushing through packed sand. Blowing a pneumatic (air) tire in Target was rather shocking, not to mention a problem, and having my tired go down between Taiwan and London prompted me to put these on the chair I use for travel. Besides, the bright blue is fun.

Many families will need the use of a wheelchair at some point. What works in the hospital is not ideal for theme parks. Perhaps this primer will give you some kind of idea of what to get to suit your needs and help you recognize what you are seeing. A seating specialist can advise you on what works and be an advocate for you if there are third parties in the mix. Please let me know if you have questions.

Note from George… I have been somewhat absent, and for that I apologize. I’m doing some occupational therapy, which is taking considerable time and yielding good results. I think it’s time to write again! Thank you for your patience.

Picture descriptions: Top picture shows a shiny aluminum wheel and spokes with bright blue tires. Second picture is of 2 black plastic wheels and spokes with black tires. Third picture shows 2 obviously lighter wheels of black, carbon fiber with red spokes and titanium handrims. Fourth picture is a small version of the main picture. 

 

Directing our own show – take 2

This is a revised version of a post from earlier in the week. It did not seem to generate much enthusiasm, and I took it down. Several people have encouraged me to re-post it. Perhaps this time I will express myself better. Thanks to all!

Out and about

George is in his wheelchair, at home, with shopping bags from Skechers, Nautica and a brilliant green bag. He has blond hair, wire rimmed glasses with an orangish tine, a blue T-shirt with white stripes, and he has removed his shoes.
As I share some thoughts with you on a warm, Sunday afternoon, I am sitting on my lanai. In Florida that is a part of the house under roof but open and screened. It is quiet and peaceful. But we don’t live only at home. We go out, and we interact with other people.

Those of us with a visible disability, or our family and friends, know that people look at us. I’ve become used to looks and stares, but it took time. They are going to look. People will naturally look at anyone or anything unusual. What happens, though, when it comes time for us to interact with them?

Our audience is watching

Those of us who use wheelchairs, and I’ve learned white canes also, seem to come under some kind of scrutiny. I’ve read that people in service and retail are often, sadly, apprehensive. They don’t know what to expect or what to do. Hence, the Just Say Hi campaign.

As we approach someone, we become the director of our own personal play. Do we look friendly? Do we look clean? Do we look alert? It is to our benefit to put people at ease.

Some tips I’ve learned

  • Adaptive equipment needs to be kept clean. It is an extension of ourselves.
  • Bling is good. My wheelchair is natural titanium, a silver gray. When it’s clean, it looks spiffy. I added bright blue tires and translucent blue casters. A gentleman in Saint Lucia recently told me that the sun through my casters made them positively glow.
  • Dress for the occasion, and wear what works for us. In the first picture I’d been shopping. In every store we went in I was welcomed and treated nicely. Obviously, from the load of goodies. Clothes need to fit and colors coordinate.
  • Smile and say Hi. Just Say Hi goes both ways, though if we can’t see the person well, we might not want to intrude.

Two guys in wheelchairs

George is sitting on the balcony of a cruise ship taking a photo with a small camera. He has rimless glasses with a gray tint. He is wearing a bright green polo shirt.On a recent cruise, as people were starting to board the ship, I heard a greeter say on her radio, “There are two guys in wheelchairs down here. The guy going by me now looks like he can handle things nicely.” Sandy and I smiled.

Thank you for stopping by. I’d very much like to hear your thoughts on this and if I’ve been of any encouragement to you.

Picture descriptions: In the top photo George is in his chair, loaded with shopping bags. He has medium length blond hair, almost round wire glasses with reddish-orange lenses, a blue shirt with narrow, white stripes, white short pants, and has removed his shoes. In the second picture George is taking a photo from his ship cabin’s balcony with a small camera after boarding. He is sitting up straight and is wearing small, rimless glasses with a gray tint and a bright green polo shirt.

25 years later

George is stretched out on the sofa. He has blond hair and glasses with an orangish tint. He is wearing a black, Mickey and friends sweater with white snowflakes, black pants, black headphones, and he is barefooted.

At first I blamed it on the new shoes, the fall in the mall and the second fall later in the day. It didn’t seem right, though, as they were an exact replacement of the ones I loved. It was my introduction to MS. Later came the ice storm and a more serious fall. Finally after exhaustive tests with lots of E’s in their names and 24 vials of blood, we met with my neurologist.

There was no drama, no tension. He told us what we already knew. The MS is progressive, and there is too much spinal cord damage for you to walk again.

After a struggle, MS put an end to practicing optometry, though I never lost the love and try to stay current. I’ve been a disabled parent and a licensed swim official. I volunteered at the hospital where I edited the volunteers’ newsletter. Then one day I called the National MS Society for information and was soon a Peer Counselor.

So I’ve officially been rolling for 25 years. Somewhere along the way I learned Rock your disability! It was a life changer. If I have a message it would be that going through a progressive disease is, at times, agonizing. A few years ago my neurologist managed to sort out the MS from the injury. That explains things that are going on now, but it doesn’t change my resolve – or yours. I know my followers, and you are strong. And kind.

Thank you for your support, and this is probably the last you’ll hear of my Paraversary. Twenty-five is a big enough number, and I’ve long run out of fingers and toes. It’s time to quit counting and roll on to the next challenge.

Thank you for stopping by and for indulging me whilst I look on some emotional times. Thanks to Sandy and Cliff for their unwavering support and the sacrifices they have made to keep me mobile. I’m blessed more than what I could possibly deserve.

Photo: George is stretched out, on his side, on the sofa. He has blond hair and glasses with an orangish tint. He is wearing a black, Mickey and friends sweater, black pants, black headphones, and he is barefooted.

An afternoon conversation

George sitting on an outdoor sofa. Legs crossed, hands folded on one knee. Blond hair, brown aviator sunglasses, white sweater with blue stripes, blue pants, blue Converse shoes, and a small cross around the neck.

Please join me in a bit of conversation. What is on your mind? I’d like to hear from you. In the meantime, I’ll ramble.

Things have been chaotic and energy consuming. The elephant in my room is my wheelchair, to which you will notice I am not confined. Trust me, it’s just out of the picture frame. But it is fatigue that bothers me most, and I’m finally at the end of an MS exacerbation. Thank goodness.

I am getting a new writing desk! Since we moved two years ago, I have captained the small desk in the kitchen that should belong to Sandy. (The desk, not the kitchen. We’ll talk about the kitchen in an upcoming post.) It will be better for both of us, and I will have more opportunity to plan and write.

Have you had your eyes checked lately? This is an eye doc talking, and I’m reminding you to get it done. I had a very thorough, dilated exam last week. Glaucoma is something that needs to be watched for, as for most people it can be stopped or slowed. It is important to check the retinas and the optic nerves. Of course, there is the chart and “which is better, 3 or 4?.” By the way, it is not a test with correct answers, and they might look alike. I had a slight change in my glasses Rx. The doctor and I talked about my light sensitivity and how to manage it. She had some helpful ideas. So go – just do it, please.

It has been a rock and roll afternoon with the severe weather alerts going off every few minutes. We had planned to go to Epcot today, but the forecast called for severe storms, which we are getting as we speak. It feels like a hurricane with intense lightning and thunder. The flower and patio show is going on. We have a few days open, so maybe I can share a few pictures.

This has reached the end. There is only so much you want to hear. Thank you for stopping by. Step or roll out onto the lanai and join me on the outdoor sofa. There is a fridge in the garage stocked with whatever you’d like – and dark chocolate.

2 Hershey's Kisses with purple foil and tags that say "dark."

Top photo shows George sitting on an outdoor sofa. Blond hair, brown aviator sunglasses, white sweater with blue stripes, blue pants, blue Converse shoes, and a small cross around the neck. Legs crossed, hands folded on the knee. The bottom photo is 2 Hershey’s Kisses with purple wrappers indicating the dark chocolate.

Better times

It is an old photo that I’d found, taken in the 1950’s in London. This reminds me of a quieter time, people feeling safe. It also reminds me of a time in my life when I felt vulnerable, criticized. There is no utopia, neither now nor in the past. It is a reminder to accept our blessings and know that we have a future as individuals and together.

To those of you in the cold and snow, please continue to be vigilant and safe. I understand and care.

Thank you for reading as I ramble through life on wheels. As you can see, it’s not all about wheels, but more about life.

Picture is an old black and white street scene taken on a bridge in London. There are only a few people, walking on a snow packed sidewalk. There is a black car piled high with snow and a double decker bus in the background.

Ramblings on my paraversary

Converse1

New Converse were at the top of my Christmas wish list this year. Whilst my white ones remain pristine (remember they seldom even touch the ground), the blue ones are my absolute favorites. They are sun-faded and worn on the inside. I’ll pair the old ones with my old jeans!

Twenty-four years ago tomorrow came the dramatic words about never walking again – except they weren’t dramatic. In a room that I remember as quiet and private, the doctor simply explained. We talked of progress and wheelchairs and adapting as we go.

Change and adapt have been the bywords over the 24 years, and I see no end to that. We have moved, made new friends, helped some people, and have been helped by many we’ve met along the trail.

My world has been expanded so much after something that seemed so terrible. In the last few years there has been a tendency for people who have varying disabilities to become friends and work together for our common goals. Let’s keep that going.

Thanks to every one of you for your friendship, your support, and your kindness. Not just to me, but to each other. Another year will make a quarter century of living on wheels. I wonder what “adapt” will mean this year. I’ll let you know. Thank you again.

Picture: George’s feet in new blue and white Converse All-Star’s, loosely laced. They are on the footrest of his wheelchair. The pavement is brick.

Around the World in 27 Days

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Image is the poster for the movie Around the World in 80 Days, which starred David Niven.

In 1873 Phileas Fogg went around the world in 80 days – in a book. Please join Sandy and me as we attempt to go around the world in 27 days.

We’ll go first class, and we’ll go in steerage. Cars, airplanes, high speed trains, local trains. And did I mention airplanes?

The adventure begins in Florida – near Clermont. We’ll travel by hired car to Orlando where we’ll board Delta for a flight to Seattle. Pikes Market. The Space Needle.

Then we fly EVA Air to Taipei, Taiwan. In this amazing city we will board the High Speed Rail and travel 186 mph to the beautiful city of Kaohsiung. 

After about 2 weeks in Kaohsiung please join us as we fly to Hong Kong on Dragon Air. In Hong Kong. we will join Dragon’s parent company, Cathay Pacific, and go non-stop to London.

Ah, London. As Roger Miller described it, “Westminster Abby, the Tower of Big Ben, the rosy red cheeks of the little children.” We’ll explore in the city with which we fell in love 5 years ago.

And finally, we’ll gather up all our stuff and join Norwegian Air’s service to Orlando. And a car back to Clermont.

It’s going to be fun, and I’ll try to write frequently with some pictures as we go. And again, special thanks to friends Mike, Tamika, and Winston the bull dog for house sitting. Monday is almost here! Let’s roll!