Rocking on the porch

Panoramic view from George's glider. Potted grasses, empty planters, a bright blue bench, empty planters, a white, Greek statue. In the lawn is a tree without leaves. Sky is deep blue with white clouds.

Day 6

This evening marks six days of officially Staying Home. More to come, of course. The only question is for how long. In the interim, Sandy and I are rocking on the porch. We both have health conditions that put us at risk, and we are staying home. Social distance, as it were. Talking to our neighbor from a respectable 30 feet!

Sandy in a blue and white glider chair. She has red hair, a light green t-shirt, white shorts, and glasses.

It isn’t that we don’t have things to do. We do, indeed. Who wants to do “projects” when the spring that finally arrived is beckoning on the back porch? We have watched the sunrise and the sunsets. I’ve taken some pictures of the ordinary. These things become beautiful if we wait for the light and take our time. It has been rather refreshing.

Natural pottery colored planter in the form of an antique truck. In the bed is a large, soft cactus plant that overflows the sides. The morning light is angling across the plant and front of the truck.

 

 

Sometimes we need to follow local events and ignore the hype and misery of the press. This is one of those times. We are trying!

George is in his blue and white glider. Beyond is his wheelchair. He has blond hair, sunglasses, and is wearing a blue, classic Mickey Mouse t-shirt, and dark blue shorts.

 

 

It’s not like I don’t have anything to do. I need to take advantage of this nice weather to spray liquid fertilizer on the shrubs. Then I need to fix the weed sprayer and eliminate the pesky plants that we don’t want. Ironing! If I ironed the summer shirts that have been waiting since fall, I’d have some crisp cotton and linen to wear whilst staying home.

A word about small business ingenuity

Two loaves of freshly baked bread. Each is wrapped in a clear wrapper with the type of bread printed on the label. White on the left and wheat on the right. They are on a wooden cutting board on the granite countertop.

The grocery stores are picked clean. There is literally no bread to be found, for example. (And I promise I won’t mention the toilet paper crisis.) Meanwhile restaurants are empty with the fallout being that our small town, wholesale, French bakery needs customers. They posted on the local Rants and Raves Facebook group that beginning today they would have bread and sweet breads available. And cookies. They created a drive thru system of ordering and picking up bread at the first entrance and paying at the second entrance. Employees are wearing gloves and masks. They report a steady line all day today. Tomorrow they will expand the menu. The public gets bread. The bakers get work. Win, win! The bread is delicious, and the cookies (biscuits for y’all in the UK) are soft and yummy. Chocolate chunk, peanut butter, and oatmeal raisin. Awesome! We did leave the house for this fresh, wholesome product delivered in a safe manner outdoors.

Tomorrow, day 7

Maybe tomorrow will bring fertilized plants, dead weeds, wrinkle-free shirts, a clean floor, and dust-free furniture. Maybe it will bring more quality time together on the back porch. What do you think it will be? If you guess quality time, you will be right, for sure. With Jupiter, Mars, and Saturn directly above in the crystal clear sky, Sandy and I bid you Good Evening Sandy in the evening, in the glider.and wish you and your families health, safety, and quality time together. And before I stop, we’d like to say a big THANK YOU to all of our first responders, medical people, and everyone who are working so hard, taking chances to protest the rest of us. And let us not forget their families. Blessings. ūüôŹ

 

Picture Descriptions:  Main photo is a panoramic view from George’s glider. Potted grasses, empty planters, a bright blue bench, empty planters, a white, Greek statue. In the lawn is a tree without leaves. Sky is deep blue with white clouds. Second photo is Sandy in a blue and white glider chair. She has red hair, a light green t-shirt, white shorts, and glasses. Third photo is a natural pottery colored planter in the form of an antique truck. In the bed is a large, soft cactus plant that overflows the sides. The morning light is angling across the plant and front of the truck. Fourth photo shows George is in his blue and white glider. Beyond is his wheelchair. He has blond hair and is wearing sunglasses, a blue, classic Mickey Mouse t-shirt, and dark blue shorts. Fifth photo shows 2 loaves of freshly baked bread. Each is wrapped in a clear wrapper with the type of bread printed on the label. White on the left and wheat on the right. They are on a wooden cutting board on the granite countertop. Final photo shows Sandy in the evening, in the glider.

Wheel-Tech, Part 2

A large, comfortable, retro-style arm chair with a matching toss pillow and ottoman type foot rest. It is rose color with cream trim and flowers.It’s a chair! So… what is a chair? We all have them; we all love them. What happens, though, if we put wheels on it? In Part 1 we talked about the wheels we put on chairs and call them wheelchairs. Wouldn’t it be fun to put wheels on that upholstered chair?!? 

Of course we wouldn’t attempt that, but today let’s have some fun and examine the chairs on which we do put wheels and how they are similar to the chairs in our home. 

What is under all the soft cushions in the chair at the top?  A frame is usually made of metal or wood. The heavier that frame, the harder the chair is to move. The exact same thing applies to wheelchairs. The chair has a frame that is made of aluminum, titanium, or carbon fiber. The lighter the frame, the easier it is to propel or push. 

A modern, custom, ultra-lightweight wheelchair. The frame is natural finish titanium, silver gray in color. It has red axles and wheel spokes and black cushion and back.We need to be able to actually sit on our chair, so on go a seat sling on which we put a cushion, and a back. The back is usually nylon but can be custom made for the user. The cushion must support the full weight of the rider and also protect the delicate skin.

I was talking with a lady one day in the parking lot of a grocery. She asked if I minded her watching me put my chair into the car. Intrigued by the process, but especially the cushion, she explained that her husband had recently been sold a wheelchair that had no cushion. He said it hurt. Of course it hurt after sitting in it all day long.

Manual wheelchairs have either a “folding” or “rigid” frame, though actually both fold. The “folding” chair has a cross-brace that can fold the seat similar to a Director’s Chair. The “rigid” frame is essentially a box. Usually the back can be folded down. I once had a chair that could have the seat folded, the back folded down, or both at the same time. It had a lot of moving parts to keep tightened. In general, experienced users tend to prefer the rigid chair for its durability and lighter weight.

That’s it. A frame, a back, and a cushion – almost. Every user has a different need. It might need to be very easy to push or get in and out of the car. Maybe it needs a motor. A motorized wheelchair with a thick cushion, padded back, and blue arms. It is controlled with a mouse.Want a bike? It’s called a handcycle.

From the chairs in our living rooms, to our dining rooms, to outdoors, to the office, a chair is not just a chair; a wheelchair is not just a wheelchair.

Whilst I have your ear, may I add that people who use wheelchairs are neither confined nor bound. Those terms date from an era long past, when the wheelchair was more of a hospital item. They are degrading and imply inferior ability. The modern wheelchair is a device of independence and liberation. If we shop ’till we drop, I’ll be going when most walkers are ready to go home!

Thank you for following this 2 part tech series. I hope I haven’t bored you. If you have questions, please feel welcome to let me know.¬†Disclaimer, aka the fine print, I am not a seating specialist or physical therapist. Please get proper consultation before ordering or using any type of wheelchair.

This was written as a 2 part series for CAPTIVATING! and is used with permission.

Photos: Top photo is of a large, comfortable, retro-style arm chair with a matching toss pillow and ottoman type foot rest. It is rose color with cream trim and flowers. Second photo, a custom, rigid wheelchair. It has a silver-gray, natural finish titanium frame. The axles and wheel spokes are red. The cushion and back are black. Third photo shows a motorized wheelchair with a thick cushion, padded back, and blue arms. It is controlled with a mouse.

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. 

 

Christmas at the Magic Kingdom

Close up of Cinderella's Castle. Soaring palace of gray stones and bright blue tiled turrets. There is a golden spire on top. On the front is a clock.

Cinderella’s Castle, a thing of beauty and the centerpiece of Disney’s Magic Kingdom. We all need a bit of magic in our lives, and there is no better place to find it than here. Christmas is special in the Magic Kingdom. Main Street brings back the joy of the old downtowns where Christmas was a world of lights, bows, and hope.

This is the post that nearly didn’t happen, and even tonight I cannot re-create the way I was feeling having returned from a day of fantasy and fun. I’d like to share with you, though, the things that I saw and loved and maybe impart a bit of how I felt.

Frontal view of an old car. It has a red hood, gold headlights, and a black cloth top. Cinderella's Castle in in the background. There are 2 dancers on the left.

We arrived early, having eaten a light breakfast at home. Between the parking lot and the entrance is Bay Lake, a huge lake created from the previous marsh land by Walt Disney for the express purpose of broadening the experience and separating the “magic” from the world. He designed two ways to cross, futuristic monorail or historical replicas of the Staton Island Ferries. Town square is first, then Main Street, and at the other end is   the beautiful castle.

After visiting the Confectioner’s shop and bypassing the throngs at Starbuck’s (it is somewhat camouflaged), we decided the course of least resistance would be brunch at The Plaza Restaurant. A 2 story, white columned building with a brilliant painted gold ceiling on the second floor porch.the Plaza Restaurant. The perfect start to the day, it avoided the necessity of the lines for “fast” food. Then we just let ourselves drift where the mood took us. Back through the shops, then in front of the castle. Having been there many times, we have no need to see it all in one trip.   It is fun to stop, find a bench or even someplace to lean, and watch the people. Some are in a rush, some in awe, and more Disney Christmas shirts than I can remember seeing before. Harper's Mill is a tall, iron red mill complete with a working water wheel. Behind are dense, green trees. Below is the reflection the entire mill in calm water.

A short walk from the plaza is perhaps my favorite thing in the Magic Kingdom, as you will note from the huge photo. Harper’s Mill is on Tom Sawyer’s Island across from Frontierland. It’s magic, folks. You can cross miles and years in a few minutes. Harper’s Mill is one of the timeless and classic originals from the park’s opening, and people continue to stop and just watch the water falling over the water wheel.

Close up of the Haunted Mansion. Red brick with chimneys on either end and a round turret with a bat weathervane on top. The right side of the mansion includes a glass solarium.

The Haunted Mansion is where the voice of the late Thurl Ravenscroft invites you to “Step into the dead… center of the room” and later intones that there are 99 ghosts living here, “Would you like to join them?”

A huge, fully blooming bougainvillea is in the foreground with the Crystal Palace behind. Some will see the bougainvillea primarily, some the Crystal Palace.

Press on leisurely, cross the bridges, and find yourself at the beautiful Crystal Palace. Dining there is an incredible experience. Stunningly beautiful inside and out. It currently operates as character meals, and a dear friend recently told me it was a wonderful experience for her family.

For us it was time to call it a day. We like to visit a park and explore part of it leisurely. Living closely gives us that luxury. We took our time on Main Street, bought a couple of T-shirts, of course, and savored the day. In the above photos I am taking a photo of a window display with the tiny camera I’d brought for fun and the result, a close up of Miss Daisy Duck.

In the previous blog I expressed my frustration that the photos I wanted were not recognized. That spontaneously resolved within about a day. Don’t ask me why or what happened. Anyway, I’ve tried to express how we felt that day last week. Disney is where families and couples, young and old, like to come, and the Magic Kingdom remains special. Thank you for joining us on this day, albeit late. Sandy and I wish you joy this season and beyond. Happy Hanukkah and Merry Christmas from Florida.

Pictures:   Main photo is a close up of Cinderella’s Castle. Soaring palace of gray stones and bright blue tiled turrets. There is a golden spire on top. On the front is a clock. Second is a frontal view of an old car. It has a red hood, gold headlights, and a black cloth top. Cinderella’s Castle in in the background. There are 2 dancers on the left. Third is the Plaza Restaurant. It is a 2 story, white columned structure with a brilliant gold ceiling on the second floor. Fourth is Harper’s Mill is a tall, iron red mill complete with a working water wheel. Behind are dense, green trees. Below is the reflection the entire mill in calm water. Fifth is a close up of the Haunted Mansion. Red brick with chimneys on either end and a round turret with a bat weathervane on top. The right side of the mansion includes a glass solarium. Sixth is a huge, fully blooming bougainvillea is in the foreground with the Crystal Palace behind. Some will see the bougainvillea primarily, some the Crystal Palace.

 

Getting personal with SCI

George is 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. 

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. 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.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. George's feet on the footrest. He is wearing blue and white Converse shoes.¬†

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.¬†

Waiting for a turtle

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.

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. Snack and comfort food. A large box of Corn Chex, a huge jar of cheese puffs, tack chips, and powdered sugar donuts.

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¬įF (37¬įC) 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.

George sitting in a plywood cutout, so wheelchair isn't visible. Appears to be in a car with silhouette of green batman-shaped ears above.

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.