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. 

 

Beat the heat? No, but…

A hot, hazy sunset. The white sun is setting below a cloud bank is an orange sky.

The ad on radio fairly screamed, “Beat the heat this summer.” How exactly are we going to do that? Answer: We aren’t, but we can live with it. As I sit at my writing table I can think of several things to do about summer or year ’round in tropical areas. I’ll do these randomly off the top of my hatless head. (I don’t wear my hat in the house, which, by the way, is nicely air conditioned.)

Screen shot from a phone showing the weather for a city, Clermont. It shows Partly Cloudy, 94 degrees. The forecast for 3 days is for sun and thunderstorms with highs in the 90's. There is a notation written on it, pointing to the 94 that says, "34C."
As we enter July, much of the Northern Hemisphere will experience several weeks of hot temperatures and bright sun. For anyone with a neurological disease such as multiple sclerosis or fibromyalgia, the summer heat means fatigue is a problem. For those with light skin, sunburn is a serious matter. Let us not forget that darker skin can burn, as well. Para and quadriplegics who do not regulate heat in the paralyzed areas face the serious danger of over-heating.

I personally do better in the heat than the cold, but I still have to manage it. Along the way I’ve read some very good tips and learned a few on my own, sometimes the hard way.

These are some things that come to mind in no particular order that can help. The byword of summer is Hydrate. Hydrate, hydrate. I can’t say it enough. Water is generally considered the perfect hydration drink. I like my water either filtered or natural spring water and cold. I cannot comment on sports drinks with any authority. If I get too hot, I like a couple of them. Please note that energy drinks are not considered hydration drinks.

A simple, yet effective, tool for keeping cooler and reducing light is the hat. There are hats of all styles. For light and heat we are concerned with three things: the color, the brim, and the material. My wife Sandy wearing a soft blue and white striped hat with a large, floppy brim. She has on a matching top, dark sunglasses, and long, light colored hair.

  • Lighter colors reflect light and heat. A white hat will let less heat get to the head than a black one. A dark color on the underside of the brim, however, will help with light that is reflected off of sidewalks and bright surfaces.
  • Brims can be wide (think summer straw hat), turned down (rain hat), or just in front (baseball cap). Wider defects light off of a wider skin area, whilst turned down offers good protection for the sensitive skin on top of the ears. The ubiquitous baseball cap is practical, relatively inexpensive, and comes in a myriad of logos. A friend who was helping me clean out my closet asked, “How many of those hats do you really need.?”
  • Material speaks for itself. A light cotton will be cooler than wool or felt. I have a cooling hat that has a wide brim, dark green underneath, and looks silly (my wife disagrees about silly). It can make my day outside possible.

Much the same can be said for clothing. Light colors reflect light and thus heat. Before moving to Florida I’d never have teamed a white shirt with khaki pants or shorts. It is common, and I quickly found out why. Fabrics that breathe are cooler, and looser is also cooler.

I know this will give you the perfect excuse to go out any buy that white Porsche you’ve been wanting. The color of your car makes a huge difference to its interior temperature. When we come out of the grocery a black car in the Florida sun will be 40 degrees (22C, I think) hotter than a white car. Either way, it is best to air it out and let cooler, fresher air flow through before getting in. Please don’t ever leave children or pets in the car.

Lighter to reflect light, dark to keep it out of our eyes, fresh air, and water. Now go find a nice air conditioned spot and get back to the book you’re reading!

How do you keep cool in summer? Let’s share ideas and things that work for each of us.

And that photo at the very top? That was the actual color of a Caribbean sunset, not a filter. The day got very hot. Thank you for stopping by. I hope I’ve not sounded too much like a physics professor, except maybe my high school physics teacher who made even physics fun.

George

Picture Descriptions: Top photo shows a hot, hazy sunset. The white sun is setting below a cloud bank is an orange sky.  The second photo shows a screen shot from a phone showing the weather forecast. Currently 94 degrees. The forecast for 3 days is for sun and thunderstorms with highs in the 90’s. There is a notation written on it, pointing to the 94 that says, “34C.”  Third photo has my wife Sandy wearing a soft blue and white striped hat with a large, floppy brim. She has on a matching top, dark sunglasses, and has long, light colored hair.

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.

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.

Captain, camera, and coloring

IMG_0826If you were to ask me my favorite villain I’d tell you it’s a toss up between Auric Goldfinger and the delightful Captain Hook. (Delightful, George? Okay, maybe not all that delightful.) I enjoy his antics and his frustrations.

I’m creative by nature, and that has been expressed with photography and writing. This summer I saw some adult coloring. “Can I do that?” I watched a 10 minute video on YouTube and was hooked, pun intended. Off to the crafts store! I started with 12 colors and soon added over 100 more.

I learned that in adult coloring there are no rules. Color what you like in any colors you like. Let your imagination guide you. With that in mind I chose my first project, a camera. But not just any camera, a Flower Power camera!fullsizeoutput_17afWith my strongest reading glasses and my pencils I enter a zone of concentration free of outside stresses. Time passes unnoticed. One day I almost forgot to eat lunch.

Since nobody’s perfect and there aren’t any rules, there is no penalty for the mistake I made in the Captain Hook picture. If you look between his legs, you’ll notice a small area of ocean I forgot to color. Oops. I noticed it after getting this ready to share. It has now been corrected, by the way.

I like to see how others share their lives and experiences. I love to read and listen to audiobooks, see your pictures on Instagram, and read your blogs. Thank you for stopping by and indulging me whilst I ramble about villains and psychedelic cameras. However you express yourself, enjoy your time and know that others enjoy your work.

Media: Both pictures feature adult coloring. The top is of Disney’s Captain Hook with a bit of liberty taken with the colors. He has flowing blond hair, a red and purple hat, a red coat with purple and green trim. He is on board a ship with sword drawn and pointing downwards. The second picture is a 35mm camera in shades of purple, blue, orange, peach, and yellow. It has lavender eyes and an inverted heart shaped nose in orange. It has flowers and fringe of orange, yellow, and teal. 

Coats in the closet

IMG_2381

I love winter clothes. I’m in heaven when the Bean winter catalog arrives. The problem is  that I intensely dislike winter. That little incident with the ice and the spinal cord notwithstanding, winter is not my thing.

When we get an occasional cold spell (near Orlando, Florida) I head to the coat closet. Now comes the problem. Which coat? We have about 10 cold days a year, so I have to be prepared. So here I am this morning, sitting in front of an array of choices. The ancient teal one with the purple collar? No, it’s too warm for today. The blue and white striped hoodie? No, it’s better for wind and rain. The blue Mickey Mouse hoodie? Maybe. The polar fleece pullover? Another possibility. Denim jacket? Why do men’s denim jackets have to be made from such heavy material? London Fog? Another one best suited for rain. Canvas pullover?

Ah ha! The plaid pullover! My favorite. The choice is made! Off I go outside. Wait a minute. It’s cold out here. Back inside, coat hung up, I think I’ll slip on a sweater. Now, which sweater????

Thank you for stopping by. I love your comments. It’s been awhile between posts because  it appears I reacted to a new med, and things went downhill for a few weeks. I hope y’all are having a wonderful holiday season.

Picture: George is outside in the sun in front of a background of green trees. From the top down, blonde hair, sunglasses, and the plaid coat. Multicolored, predominately blue and red with a bit of yellow layered over a red tee shirt.