Getting personal with SCI

National Spinal Cord Injury Month

The original outline for what follows was planned as a two-part blog. I kept asking myself, “How much do they really want to read about this?” Like all good conversationalists, I answered myself. “Not that much.” If you have questions or comments, please leave them in Comments. Lots of questions will yield  lots of answers. Few questions, and I have more time to do whatever it is that consumes most of my day when I’m not looking.

My own thoughts on the subject

I am not going to sit here and tell you a bunch of facts and maybe get something wrong. What I shall do is explain from my own experiences, what I’ve learned from others I’ve known, and how I feel about things. This is from my perspective and from that view only.

A primer – it doesn’t work like you might have been told

When my grandson asked my why my legs don’t work right, I explained what we have all been told. When the brain wants something to happen, it sends a signal down a cord and tells a muscle to move. If you damage the cord, the signal doesn’t get through. He was happy with that (for now). Isn’t that the way we usually think of the spinal cord? We all know that signals go upward, as well, to tell the brain that the hand touched something hot, or the feet are in ice water.

What we don’t think about until it breaks, is that the brain not only sends signals to a muscle to contract, it also sends signals to relax. The normal position is tight. So if only that part gets interrupted, the muscles stay tight. Cut the cord entirely, and usually the muscles stay relaxed.  From the people with whom I’ve talked, it seems the people with tight muscles would prefer fully relaxed, and the people with relaxed muscles would prefer tight. I’m no exception.

SCI is classified by where the damage is on the spine. Cervical injuries result in quadriplegia. If the damage is very low in the cervical spine, the person will have arm function, but not fingers. Damage in the thoracic and lumbar areas result in paraplegia. The lower the lesion, the more trunk strength the person retains.

The tingling and pain factors

I experience constant tingling. A therapist who taught me to manage it explained that the brain has a place for everything. Every sensation sent to it goes to a specific place. When we damage the spinal cord, the nerve endings at the site of damage continue to be active but are sending stray electrical signals. The brain does not know where to put this and simply files it under “pain.” Yes, the pain is quite real. This is why you will find that people with spinal cord injury/spinal cord damage frequently meditate or use music imaging to control this static.

Pot-A-to; pot-ah-to

So what is the difference between spinal cord injury and spinal cord damage? None! Typically we think of SCI as from trauma and SCD as from a disease process. In fact, once the damage is done, no matter how, the result is the same. In recent years the two have become one.

Freedom on wheels

After SCI/SCD the wheelchair becomes a prosthetic body. It does what the lower body previously did. Many of us consider the terms “wheelchair bound” and “confined to a wheelchair” to be degrading and insulting. When people ask me how long I’ve been in a wheelchair, I will check the time and tell them the truth, “About 3 hours.”

There are 3 types of wheelchairs. Custom ultralight chairs are fit specifically for the user, even down to the precise distance the wheels are from the frame. These are made from titanium, carbon fiber (I want that someday), and aluminum alloy that is supposedly light.

Power wheelchairs come in a million sizes and prices. The inexpensive, basic chairs work for someone who uses it infrequently, maybe can walk a bit. They are not considered suitable for someone with SCI. Power chairs for a person with SCI are more durable, tend to be larger, and usually have high backs. Some can recline or go up and down over an 8-12 inch range.

Sadly, I must include a breed of wheelchair that I call the Chrome Clunker. My first wheelchair weighed in at 65 pounds. Sandy could not lift it, and I could barely propel it. Modern chrome clunkers are usually heavy gauge aluminum and weigh about 40 pounds. They do not allow the user to be independent.

Let’s get personal

Not only are SCI and SCD the same once the damage is done, they can be blended. With spinal lesions from a rare form of Multiple Sclerosis and some damage from bruising, I fit into both categories. Like many people, I don’t mind explaining “what happened,” but I don’t get into lengthy discussions. These things are not the finest of memories. I am a T10 incomplete paraplegic. The spinal cord is not fully cut. I have some movement and feel but nothing useful. I am not sensitive to hot but am intensely sensitive to cold. Vibration feels like Medieval torture.

I drive with hand controls. There is a lever to the left of the steering column. Push down to go, in to brake. Steering is with my dominant right hand. (All sorts of driving aids are available, and even quadriplegics can drive.) Our home is Universal Design, fully accessible. Universal Design is designing something so that most people can use it without having to adapt it later. There are no steps, wide doors, there is a roll-in shower, lowered light switches, raised outlets, a pantry cabinet with roll-out shelves, and the microwave built into a lower cabinet. Floors are wood or tile, no carpet. I’m blessed to have this, as most people never have the opportunity.

Thank you for stopping by. Life on wheels is fine, just different. Was this helpful to maybe understand a friend or coworker? Questions? As I said before, I’m open to about any question, but be prepared that I might answer it.

Photos: Main photo shows George in his wheelchair beside a red, British mailbox. His blond hair is windblown. He has glasses, a red rain jacket, half-fingered gloves, and jeans.  Second photo has George in a custom, titanium wheelchair. The chair is natural finish titanium, wheels that resemble bicycle wheels, and bright blue tires. He is wearing dark sunglasses, a green and white t-shirt, and dark pants. He is eating lunch outside on a deck.   Third photo shows George’s feet on the footrest. He is wearing blue and white Converse shoes. 

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Waiting for a turtle

The monster turtle

Have you ever waited for a turtle? A turtle that you can’t see but are told it is big and mean and getting bigger and meaner? And it’s going to walk right over your house? The turtle has a name – Dorian. It is a big hurricane that formed in the Atlantic ages ago and has been taking its sweet time on its trek. The forecast track put my house directly in Turtle Dorian’s path. We’ve been preparing for days.

I’ve experienced hurricanes that came too close, some that missed entirely, and too many tropical storms to mention. Only once was I scared, and that was during Charley, which came through at over 100mph in the middle of the night. All that having been said, never turn your back on a tropical system. But how slow can this thing move?

We are already stocked up with food that can be eaten cold, water, flashlights, a lantern, and numerous batteries. Over the past few days we’ve gassed the car, filled the bathtub with water, bolstered the supply of protein bars, and bought the most important thing to anyone who has weathered out one of these storms – comfort foods, aka snacks. Still waiting for the turtle.

It’s looking the other way

Yesterday the National Hurricane Center began moving the forecast track of Turtle Dorian to the east. They admit they really don’t know. We are told that Central Florida can “stand down.” We are getting missed? Maybe. Tropical storm, but likely no more. We shall see.

I ask you a question: What should we do with all those bags of goodies? Do we wait for Dorian? Do we put them back in case the next turtle is more of a hare? Do we dutifully eat the stuff we’d normally not buy? Meanwhile, I think it’s time for a protein shake.

Where have you been, George?

Please accept my apology for being somewhat absent, both from writing and commenting you your blogs. I’m working to catch up. My family lives in Taiwan and is home for a month most summers. Plans got a little crazy, but the result was that I got to spend some quality time with my 6 year old grandson! Splash pads, coloring, LEGO’S, and chicken restaurants with indoor playgrounds. We built a robot “Daddy” with LEGO’S and put a tree on his head. Laughed ’till we cried!

Thank you for stopping by. I always appreciate your Likes and Comments. But what are we to do with all that comfort food if the turtle stays out in the ocean?

Images: Main photo: 6 large bottles of spring water. In the foreground are an aluminum Florida Gators glass, a large, clear glass with beach chairs, and a stack of red, plastic cups.  Second photo:Snack and comfort food. A large box of Corn Chex, a huge jar of cheese puffs, tack chips, and powdered sugar donuts.

Making MS lasagna

How to make MS Lasagna… (This is a repost with minor modification for accessibility that seems quite timely. Thanks. – George)

Start with noodles that go soft in the heat, like my muscles. Add some oil like sunscreen to protect from burning. A little pepper and maybe some rosemary. And finally toss in the MS. Bake at 99°F (37°C) every day for a week. Remove from oven briefly, add a dash of pain, and bake another week. My summertime motto of “stay cool and hydrate” isn’t cutting it this summer. We aren’t getting the usual rains to cool the ground, and it feels like the desert if deserts steamed. It’s about too hot and bright to use the pool where I cool off and also exercise. So I’m behind. I’m here if you need me. Send me a message if I can help. Summer – we’re in this together, and if we stick together we can get through.

Image: George is sitting in a wooden cutout of a car. He is wearing a Disney visor, sunglasses, green shirt, and workout gloves for pushing the wheelchair. 

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.

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.

Thank y’all so much!

I simply want to take a moment to say Thank You! Today, WordPress informs me, is the fourth anniversary of Popping Wheelies. This is number 92, and you haven’t stoned me yet. That in itself is a miracle. I treasure every one of you and am thankful when you take your time, which I know is precious, to Read, Like, or Comment. Blessings, my friends, and thank you again.

Picture description: Silhouette of a wall of 3 windows. They have plantation shutters, open wider in the upper sections than the lower. Below is a small table with a small desk lamp, also in silhouette.

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.