Beat the heat? No, but…

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.)

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.

• 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.

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People, Chairs, and Wisdom

I am proud to be an advisor and occasional contributor to CAPTIVATING!, an inclusive online magazine. I wrote this for the May, 2017 issue and is used with permission. The format here is a bit different.

A newbie to life on wheels, he had his world under control that afternoon. In a narrow hallway, he was approaching the exit when a man emerged from the nethermost region behind his chair, grabbed the handles, lifted the chair up, and spun him around. “That’s better,” as he went out the door. Great. How do I open the door?

Never again did my wheelchairs have handles that anyone can grab. They fold down nicely out of harm’s way. That’s not all I’ve learned over decades of rolling.

Mobility Awareness

Let’s take a lighthearted look at personal boundaries, types of wheelchairs you encounter, wheelchair vs scooter, and how to bind someone to a wheelchair.

I cannot imagine that anyone reading CAPTIVATING! would ever do what the man did to me. So just sit back and smile as I share a few of my personal encounters in the Twilight Zone of wheeling. 

• She approaches from the back. Did you know that a person using a wheelchair has absolutely no vision of what is behind them? She puts her hands over your eyes, and says, “Guess who.” I’m startled and my glasses are now smeared. It is the counterpart of asking a person who is blind, “Do you know who I am?” Have you ever said, “No, and I don’t care?”
• As he stands beside me, he rests his hand on the back of my chair. I am not a sofa. My wheelchair is a prosthetic body that substitutes for a back and legs that don’t work. And that ubiquitous little chair back is what is supporting my vertebrae and is keeping my balance. 
• Three or four people are talking. They are standing up. “I’m way down here, y’all.” Can you please look down sometimes or sit down if possible? Thank you, kindly.
• We’ve all had this one. “And what would he like to drink?” Ask that, and my wife will reply, “How should I know? Why don’t you ask him?

Scooters, Wheelchairs, and Grandaddy Barndollar

Wheelchairs come is all shapes, sizes, and colors. There are push rims and electric motors, carbon fiber beauties and chrome clunkers, titanium and aluminum. I thought you’d like a brief look into Who’s Who.

• Meet Chrome Clunker, which is often heavy gauge aluminum painted black and might not actually be chrome anymore. This monster weighs in at 40-60 lbs. (19-27 kg). They are the darling of insurance companies and often make their appearance in medical type settings. My first chair weighed 65 lbs. Thumbs down on that.
• Full time users need the custom chairs. These are smaller. Much lighter! If you look closely you’ll notice the wheels are bicycle wheels and tires, and are cambered in about 4 degrees at the top. The very first one was made of bicycle parts. Every aspect of these beauties is custom, even the distance between the wheel rims and the frame. They are made of carbon fiber, titanium, or light weight aluminum alloy. I have titanium now, and my chair weighs 16 pounds. From 65 lbs to 16 lbs. Think of the difference this makes in my life. More importantly, in my wife’s life! It is less for her to lift and gives me energy that I can use to help around the house.
• Power chairs are just that. Electric motors. Heavy. They range from mail order to custom. The price can vary from a run down Fiat to a new BMW. And the pricey ones are not all that rare, I might add.

Scooters, or mobility scooters, depending on where you live, are the bane of wheelchair users. We often get lumped into the same category, but the difference is mind boggling. The keynote speaker at a Multiple Sclerosis seminar described the difference this way. “If you can walk, the scooter might be right for you. If you cannot walk, your life will be better with a wheelchair.”

How do you bind someone to a wheelchair?

My Grandaddy Barndollar, back in Polk Township, Indiana, says that the best way to make someone wheelchair bound is to use duct tape. He says rope is old fashioned.

We still read in the press about someone being “wheelchair bound.” “Confined to a wheelchair” is another of their favorites. When people hear and read this, the stereotype lives on. I was over at a local theme park a few days ago. I saw several others using wheelchairs, and not one had been tied up with duct tape. Nor rope. Nor string. We were eating pizza or indulging in a delicious cupcake exactly like everyone else. Maybe somewhere along the line, we broke free of the duct tape and are no longer bound or confined. Now, how do we convince the press?

Another bit of Grandaddy Barndollar’s wisdom is that the basic thing we need to know about life is that people are people. We are not our wheelchairs or canes or space age prosthetics, just nice people living life a bit differently. Enjoy your life to the fullest, however you choose to do it.

Mobility Awareness Month is observed in May and was started by the National Mobility Dealers Association (NMEDA) in 2001. I was pleased to see that the State of Florida has mentioned it on their website and now includes “wheelchairs, scooters, canes, and prosthetic devices.” Inclusion is growing.

As always, thank you for stopping by and spending your time with me. Time is often our most difficult thing to manage. Please know that your time here is noted and appreciated.

PD: Main picture is a collage of 3 photos. In the large photo on the left George is sitting on a bench in a park. He is wearing sunglasses and has his foot in the seat of his wheelchair. The 2nd photo shows George in a state-of-the-art power wheelchair. One leg is crossed over the other. He has blond hair and is wearing sunglasses, a striped shirt, jeans, and Converse shoes.

The second serenade cruise

When we think of the Caribbean, our first thoughts are sand, turquoise water,  palm trees, and deep blue sky. Rightfully so, I think, but the Caribbean is a delightful blend of sights, sounds, feel, and feelings. Sandy and I recently re-created a cruise we took a few years ago, this time with a less dramatic start. Here’s a bit of history.

We had dreamed of someday celebrating our Anniversary with a special cruise. We pinched the piggy bank a bit and booked a very nice cabin on the beautiful Serenade of the Seas. All started well, for about 2 hours. I became very ill, which proved to be a faulty gallbladder. The medical staff  literally saved my life.    The entire crew was wonderful, and we managed to finish the cruise, though staying on or close to the ship at all times. I promised Sandy we’d do it again someday. When this cruise popped up again was when “The Second Serenade” trip became a reality.

Having been on several ships, the Serenade was instantly our favorite. Beautiful, clean lines and gleaming white paint outside with a huge atrium, the “Centrum,” with brass elevators and railings accent everything from shops to intimate bars to gourmet coffee. A bank of outside elevators are open with spectacular sea views as they glide up and down.  We were glad to get back aboard, this time feeling fine.

Destination – the Southern Caribbean. Cruising along at a comfortable 18 knots we relaxed and enjoyed the warmth of the sun, the ocean breeze, and the heavenly sounds of the sea. With Kindles and iPhone fully loaded, we were ready to solve some whodunnits.

Our mistake on Arbua

The first port was Aruba. It was where we made our first, and probably only, mistake. The downtown area is close to the ship, and we remembered it as nice with quaint shops and rather accessible. The plan was to visit this area and then take a taxi to the newer Palm Beach area. We soon discovered that the sidewalk and curb cuts were something of a tactile nightmare. There were some large cracks, slopes we didn’t remember, and curb cuts that took a wheelie to pass over the gaps. We forged on. With Sandy pushing and actually guiding the wheelchair and me doing the same, we used a lot of energy. The shopping area was nice, though it did not have an accessible gentleman’s restroom. We bought a bottle of mineral water from a nice lady in a small convenience store and headed for the trolly.

The person at the trolly said it went, “all over the island,” and from the way she described the schedule perhaps a 75 minute ride. Free. There was an area for wheelchair users to sit in their chairs, but 2 steps up to it. For me, that is a no go. As more people came I got adventuresome and accepted some gravity defying help. But before we could get to the area, some tourists from another ship charged into the area and took the companion seats. We asked them to move, which they refused to do. So we crowded right in on top of them! At the first stop, they moved. The trolly is actually a ride up and down the streets of the old downtown, which appeared to have some economic distress. Sadly, we’d expended so much energy that we called it a day and went back to the ship.

Lovely Bonaire is a gem

Bonaire was our favorite of the islands! A small and delightful area of clean buildings, it had the fewer stores, but they were nice as well as accessible. They have worked hard on safe sidewalks, curb cuts, and access for everyone. There was a small park with venders in tents, like a permanent street fair. It is surprisingly and pleasantly quiet.
Conversations yes, but nothing to disrupt the feeling of the small island. We stopped in a small mall for a Coke before going through to the water side of the shops. Behold, a pier going into the yacht harbor that is entirely a Caribbean style bar. There was an open table in the shade with a easy route to it. It was a fun hour watching the boats and talking with our fellow cruisers. On the way back we picked up a couple of T-shirts and had a late lunch on the Serenade. I’d say Bonaire is a gem and would gladly go back.

Curacao’s colorful waterfront

Curacao has upgraded its waterfront and access from the cruise port. It is a nice, smooth stroll (or roll!) into the tourist area. Along the way are a few vendors on the land side and large boulders between the sidewalk and the harbor. The air and sun were warm, the breeze refreshing. Across the way, the painted buildings for which the island is known did not disappoint. The buildings were old, the colors fresh and new. They have turned  the small fort into an area to enjoy the shade and get refreshments from one of the convenience stores. The liquor Curacao is made on the island, obviously, and it is available in multiple flavors. It would not fit into our luggage, perhaps another blog topic, and we probably wouldn’t drink it anyway. It was another late lunch on the ship.

Beautiful St. Lucia

St. Lucia might be the prettiest island in the Caribbean. It’s natural harbor is curving and relaxing the way Charlotte Amalie’s on St. Thomas is magnificent. There were exactly zero accessible tours offered for this cruise, so we visited the small shopping area and returned to our cabin’s balcony.  From there we could experience the harbor, the live entertainment as the shopping area, and even watch the airport. We were in the shade all afternoon, and it was a truly relaxing port.

I got to compare wheelchairs with a local tour guide. Super nice guy!

Mountainous Antigua

The people of Antigua have had a hard way to go since Hurricane Irma. The small nation of Antigua and Barbuda was hit hard by the storm. Fearing the worst, the entire population of Barbuda evacuated to Antigua. The worst happened. Virtually everything on Barbuda was destroyed. They have worked hard to regroup on one, small island, and I applaud their determination.

With three ships in port, nearly 10,000 passengers the town was beyond capacity. Not too accessible or easy to navigate originally, we ventured into a few shops, could not get into either place to get something to drink, bought a bag, thanked the nice lady in the store, and worked our way back to the ship.

Not so fast

It wasn’t time to call it a trip. More books and our balcony awaited. The distance from Antigua to the east is about the same as to Aruba in the south, and we had another two days to relax and watch the Caribbean. So the second Serenade trip was a huge success. Sandy and I had lots of quality time together, got to experience different things at each port, and came home feeling better about everything.

Thank you for stopping by. Cruising is a fun and accessible way to travel for virtually everyone. Far more than what is seen in pictures, there are sounds, tastes, smooth ports and some that are hard to navigate. I’d remind everyone to exercise caution in port towns and not venture into areas that aren’t common tourist places unless on a tour.

Picture descriptions: The main picture is taken from the waterfront in Curacao. It shows the smooth sidewalk, boulders, and the Serenade of the Seas. The ship is white and has 13 decks. The second picture is a map of the Caribbean. It is blue with a few black areas to indicate deeper water. Each island of the cruise is noted. There is a line showing the ship’s route along the north coast of Cuba, between Cuba and Hispaniola, and across the sea toward Aruba in the south. Moving east and north from Aruba are Bonaire, Curacao, St. Lucia, and Antigua. The third picture is looking from the white, tented bar on the pier into the waterfront street. There are buildings of teal and blue, with white rails and shutters. fourth picture shows the colorful, painted buildings along the waterfront. The buildings are in classic Dutch style painted yellow, brown, orange, green, teal, and blue. All have red, tiled roofs. 

 

The Amish bakery

Do you ever simply need to get away from the daily routine? A simple outing? We visited a small town an hour from our home. It was not a thrilling, or even particularly successful visit. Then we found a small Amish bakery and deli. I’ll tell you about lunch, but first…

We left home, crossed Sugarloaf Mountain, the highest spot on the Florida peninsula at 312 feet above sea level, circumvented Lake Apopka, and arrived in Mt. Dora. A small town, noted for its quaint shops and eateries, it is usually bustling. It is also extremely hilly. We have gone before but never were able to get an accessible parking space. We arrived in town, passed a picturesque church, and spotted an old shelter house. Perhaps there would be parking there. Yes! In the back was a space. We ate our mid-morning snack as we watched a rousing game of pickle ball. Shopping time. We trudged up and down hills over a few blocks. There were some interesting antiques and some fun things for the garden. We didn’t buy anything. Manual wheelchairs are not fond of steep hills and rough curb cuts, but we made it. What we didn’t find was a lunch place that struck our fancy. It was only noon, and we decided to explore in the car. If we didn’t find lunch other than a chain, we’d go home and have a protein shake. 

Aha! A small building with red windows and doors. “Amish Bakery and Deli.” There were bright red tables and chairs on the small porch and in the front lawn. I opted for the pastrami, and Sandy chose the chicken salad, both on freshly baked ciabatta bread. Ten dollars each seemed a bit high until we learned this included the sandwich, a side of macaroni salad, a bag of healthy potato chips, a warm chocolate chip cookie, and our choice of beverage. Yum. Each lunch comes is a red box that makes its own carrying handle. We ate half of our sandwiches, our macaroni salads, spit a bag of chips, and ate the rest for dinner. 

Life on wheels. It has its challenges but can be very rewarding if we keep searching and enjoy the simple things. 

Thank you for stopping by and sharing a common day with Sandy and me. I enjoy your comments and questions. In the works are some pictures and descriptions of the repeat of an ill-fated vacation that was very successful this time, but I got overwhelmed with things at home and haven’t finished it yet. 

Picture descriptions: Main photo is the front of a bakery. The entire front is made of doors and windows with individual panes. The trim is painted bright red. There is cutout of an Amish lady with white hair, black bonnet, blue dress, and black apron. She is holding a basket with a napkin and cookies. Below is a sign that reads, “Fresh Amish Pies and Cookies.” Second picture is an old cooler resembling a Volkswagen Bus from the 1960’s. It is blue with a white stripe and front. On the front is a peace sign. The lid is open, and the inside is painted black. Third picture is of  lean pastrami on ciabatta bread. It is cut in half. Top center is a small cup of macaroni salad. 

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

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

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.

Sandy, there’s no floor here!

“Sandy, there’s no floor here!” I opened the door of the state-of-the-art elevator and found only a metal grate, through which I could see the floors below.

Taiwan is an island nation south of Japan. The island’s previous name, Formosa, is Japanese for beautiful island. I don’t know why I panicked in the coffee shop.

Across the city of Kaohsiung is a small chain of American-themed coffee shops called SPR Coffee. They are ornate and have a retro atmosphere. On the walls are photos, posters, and signs from the 1940’s and 50’s. Frank Sinatra, Norah Jones, and Harry Connick, Jr. emanate from the elaborate sound system. Coffee is ground in a huge, elaborate grinder and is always freshly brewed. They do food from hot sandwiches to Eggs Benedict. The shop near my family’s home takes 3 floors of a modern building across from a park.

Guests use ornate stairways, but there is an elevator for wheelchair users. It sits prominently near the lobby area and is a plexiglass tube. A barista showed me how to operate it and invited me to use it as needed throughout my stay in Kaohsiung. You’ve used the pneumatic tubes that connect bank drive-throughs to the main building. This is the exact same thing, only it will lift an adult using a manual wheelchair. It is swift and quiet.

On our first trip, we sat in the second floor cafe. The coffee and sandwiches were tasty and aromatic. We vowed to return, and return we did. Only this time we elected to try the third floor. That is where I nearly lost it.

As Sandy made her way up the steps, I was whisked quickly upward. I opened the door, began to roll out, and panicked. “Sandy, there’s no floor here!” All I found was an open, wrought iron pattern of elaborate, curving lines. My casters, the small wheels in the front of the chair, would fall right through those openings! I don’t do well with heights and balconies, except on a ship. Looking though the grate disoriented me.

“It’s fine. Come on out,” Sandy assured me. “But there’s no floor!” “It is plexiglass,” as she walked across it.

Sometimes things, are better than we might think. When scared, I made the matter out to be worse than it was. In fact, it turned out okay. This is the case with so many things in our lives. Bad things turn out for the best if we have faith and keep trying.

Expect the best, and prepare for the worst.

Thank you for stopping by. I apologize for having not written in a few weeks. Sandy and I did a 30 day detox. We have reset our brains and cooking back to healthy and nutritious. Much of what we are eating is organic. I’ve resumed doing free weights and have added some new things for arm and wrist strength.

Comments are welcome and appreciated. I wish you all the best. For those who have been in the bitter cold, Sandy and I care and hope you get an early spring.

Photo descriptions: The main picture is a round sign that reads SPR Coffee against a green background. Second picture is an urban park. The foreground is grass, followed by a small stream lined with river rocks, and beyond are more park and then skyscrapers in the distance. To the right is a foot bridge on which is visible a man doing Tai Chi. The third picture shows the elevator in the center. It has a blue, steel frame with a clear tube and a door. It is just large enough to carry a wheelchair. To the right is a young man with glasses, a navy shirt, and jeans. On the left are posters and pictures on the wall.

25 years later

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.