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 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. 

 

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.¬†