The Amazon Echo is one of those products made for able-bodied people, that has the potential to improve the lives of thousands in the disabled community. The Echo is available in 3 three different models and I assume more features are found in the larger sizes. The Echo Dot is the smallest and least expensive at $50 yet it provides everything most would want. Once plugged in, connected to your Wi-Fi and programmed the Dot becomes a tremendous asset. In order to set it up you must download the Amazon Alexa App, which is free, to your iPhone or iPad. Then, verbally you can speak to Alexa the Echo’s voice and she will perform many simple daily tasks. She can give you the local weather, a news update, play any kind of music you may be interested in, but her abilities far exceed those simple chores. She is able to read any book found on Kindle or Audible. You can have her wake you up every morning to either an alarm or music. Alexa can play soft music while you fall asleep and then shut herself off at a predetermined time. She can also be used as a timer by telling her the time duration you want her to set up. You can make shopping and to-do lists and then transfer them to your iPhone. You can even order directly from Amazon. While, I have not used it, it is my understanding that the Echo also enables you to call and speak with other individuals who also have an Echo.
Amazon Echo Dot
However, for one with a disability, the Echo’s most useful features is the ability to turn your home into a Smart Home. A variety of Smart equipment is available, at very reasonable costs, which will allow you to take control of most of your appliances and devices verbally. I now have the ability, through Alexa, to turn off and on my CPAP machine as well as the lights in the bedroom. There are Smart Plug-in Outlets, Smart Wall Switches, Smart Door Locks, Smart Thermostats and even accessories that will let you control your television with Alexa. For those of us with range of motion issues, poor dexterity or limited mobility the Echo Dot provides an inexpensive yet simple, convenient way for many to take greater control of their home environment with only your voice.
Amazon is constantly increasing the ability of the Echo to perform tasks. These improvements, unlike those with computers, do not have to be downloaded into the unit itself. Instead the new program is uploaded to the Cloud and is instantly available to your Echo.
Posted in Adapting Equipment, Adaptive Technology, Attitude, Community Inclusion, Disability, Education, Independent Living, Observation, Reality, User Friendly
Tagged adapting, Caregiver, control, creative idea, inexpensive solution, life lesson, physically challenged, quadriplegia, society, using your mind
The light, from the full moon, was twinkling off the water as we slid our kayaks into the lake. We had paddled here many times before, but there was always something special when paddling under a full moon. The small little lake hidden off an old road in Jefferson County, was absolutely beautiful. It was probably close to midnight when we loaded the kayaks back on the truck and headed for home. Little did I realize that the time it would be many years before I would return.
After my accident in 1999 I wondered if I would ever go back and paddle on this lake again. In my mind, I set it as a goal not knowing if it was even realistic. In the rehabilitation hospital in 1999 I read a quote in a book written by Christopher Reeve. It had a tremendous impact on my attitude toward my own rehabilitation. Reeve said:
“I refuse to allow a disability to determine how I will live my life. I don’t mean to be reckless, but setting a goal that seems a bit daunting actually is very helpful toward recovery.”
I began kayaking again in 2003. We had to start from scratch. No information was available on quadriplegics kayaking. Progress was slow. It took a group of people for me to go at all; as a result, I only got out a couple times a year. So improvements and adaptions were slow. Once I even tipped the kayak over and since I was completely strapped in and my hands strapped on the paddle would have drowned if it wasn’t for the quick thinking of two members of my “entourage”. Despite all of that, progress moved ahead, first pontoons, next a stadium seat whose back was raised by a local machinist, chest laterals were added and after much additional tweaking during my one paddle last year I decided everything was stable enough to go for my goal. Through all these years I was paddling on a large pond owned by good friends of ours. But in the back of my mind always was the dream to return to Payne Lake.
Steve fishing for bass
Yesterday, I awoke from the dream, many times in our lives, we imagine certain events happening and when they do they fall far short of the scenario that had been created in our mind. Yesterday the experience exceeded everything that I had hoped for. We paddled for several hours. My wife and I together on the water for the first time in over 18 years. The lake whose aesthetics I could only dream of were more imposing in person. By sheer accident, I paddled up on a heron, which I was unaware of, until I was almost on top of her. We watched her fly from spot to spot and even saw her catch a small fish. My friend Steve, without whose help I would not do half of the things I do, had a bass launch out of the lily pads to take his lure, but it slipped the hook during some aerial acrobatics. I live for opportunities like this.
What a special day.
The moral of the story is don’t stop dreaming. Dreams really can come true if you continue to work on them and refuse to give up.
Posted in Ability, Adapting Equipment, Adaptive Technology, Attitude, Behavior, Determination, Disability, Education, Friends, Friendship, Love, Nature, Observation, Reality, Recreation, Sensitivity
Tagged adapting, Caregiver, life lesson, lifestyle, natural environment, outdoors, physically challenged, quadriplegia, Recreation, using your mind
The song Simple Gifts is a hymn written in the 1840s by a member of the Shaker Community. The Shakers were a religious sect that migrated to America from England in the late 1700s. Their religious principles focused around being satisfied with the simplistic existence and the natural environment. The community produced a lot of very simple items which they sold to maintain their existence. The items stressed simplicity and functionality. You may have even heard of Shaker furniture which is still prized today by many people.
Every season seems to bring with it particular “simple gifts”. This spring was no exception. I have been struggling with an extended period of depression, but with the arrival of spring came certain “gifts” that I always look forward to. One of the earliest is, after a long, cold winter, just sitting in the warmth of the sun and feeling my body warm. (Sitting In The Mornin’ Sun)
Another of nature’s simple gifts is the arrival of the birds which have migrated south for the winter. Many of those returning are notable because of their beautiful colors such as the Baltimore oriole, the Rose Breasted Grosbeak and the Indigo Bunting. Being confined to a wheelchair encourages one to spend more time bird watching than when able-bodied. Two of my favorite species to observe are not brilliantly colored, but are enjoyable to watch because of their fascinating behavior and their willingness to live close to man. Since my injury, we have done much to encourage birds to share our environment with us. Every year swallows, set up house in the same nesting box. I have written about them before too. I love to watch them in flight because of their ability to change direction instantly darting left and right as they pursue insects. It’s hard to watch them fly and not believe they are enjoying every second of their lives. While the female is sitting on the eggs the male, who I have named Captain America, sits on top of the eagle on the top of the flagpole and will defend the nest against all comers.
Baltimore oriole at our feeder
The birds, however, that I enjoy watching the most are the House Wrens. Last spring my wife went out to hang some clothes from a clothesline. She reached for a clothespin and realized there were a bunch of sticks protruding from the bag. She slowly opened it and saw it was a bird’s nest with three eggs nestled in the sticks. After some searching on the Internet we discovered it was the nest of house wrens and spent much of the summer observing their behavior. This year, being unable to find the clothespin bag we hung out a <a that I had made during the winter in the exact same spot and were not disappointed as the wrens quickly began building their nest in it.
A female house wren bringing in a sack of spider eggs into the nest. It’s believed that when the spiders hatch, they eat some of the mites that have been brought in by the adults and then when they get bigger they are eaten by the growing wrens.
With both the wrens and the swallows, the males participate in the raising of the young. Below is a video I took last year and last week, which looked like the final day of nest building. The female is now sitting on the eggs while the male spends much of his time sitting on the laundry line poles waiting for the eggs to hatch. Once hatched both the male swallow and wren are totally involved in feeding the chicks and protecting the nest. We have no way of knowing if these are the same birds from last year.
What I enjoy so much about watching these birds is their devotion to each other, raising the young and their seeming enjoyment of life itself even though it’s hard work and demanding. While we humans are ever striving to modernize our lives and gain more possessions, the habits and purposes of these birds have changed very little over time. I think we could all benefit by not being so quick to adopt change for change’s sake to improve our daily lives and be happier with the simple gifts. And, oh yes, the time spent observing and videotaping the birds goes a long way to improving my outlook on life.
*All of the pictures and videos contained in this blog were taken on our property
Posted in Ability, Attitude, Behavior, Birds, Community Inclusion, Education, Nature, Observation, Reality, Recreation, Sensitivity, Stuggling
Tagged control, depression, life lesson, lifestyle, natural environment, outdoors, physically challenged, Recreation, society, using your mind
The phone was ringing. Shortly after my wife answered it, not only did I know it was our son, but I knew why he was calling. After a couple minutes she shouted to me “Mark wants to talk to you.” As I turned on the speaker my son said “Happy Anniversary.” I couldn’t believe it! We’ve been married 52 years. As our conversation came to a close, I told Mark that we’re going out to dinner at an extremely nice restaurant not far from here. Always looking to make a joke I said who knows “maybe I’ll get lucky tonight.” There was no chance of me getting lucky in the way this quote is usually used. Abstinence, while a choice for some, was just another behavior forced on us by my quadriplegia.
Wedding Day 1965
It is not unusual when I take questions and answers from a group I’d just spoken to for someone to ask me what do I miss the most. I always answer intimacy. Not sexual intercourse, which it 74 would probably not be a major activity anyway, but rather the subtle displays of affection that take place during a normal day. The warmth and security of a hug, a touch as my wife passes by or most of all snuggling in bed. All of these little shows of affection are extremely difficult for someone who was paralyzed and confined to a wheelchair. Once I’m placed in bed, I can only move my arms and my head. Being unable to roll on my side makes snuggling next to impossible. A hug with a person in a wheelchair is awkward at best. The physical presence of the chair combined with the fact that my wife has to bend way over makes contact difficult and as a result usually brief. At night or in the morning while I am still in bed, I will notice my wife walked by and touch my foot or leg. If I wasn’t looking I would never know that it had taken place.
In reality being a quadriplegic takes a lot of common everyday occurrences away from you. However, there are some things that you become more conscious of as a result of your disability. One of the first things that would be mentioned is the observation that the majority of people in our society are good, caring and loving individuals who want to do the right thing. Unfortunately, most programs on television or the Internet tend to focus on the small percentage of individuals who do not fall into this majority.
To get back to the original statement I made to my son little did I know that it was foreshadowing for the dinner ahead. Our waitress at the restaurant also works in my doctor’s office so she knew who we were. In the course of the dinner we mentioned to her that it was our 52nd wedding anniversary. When she bought our dessert there were a couple candles in it and we laughed as we blew them out. When it came time to pay she informed us that someone, who wished to remain anonymous, had already paid for our dinner. While the restaurant was pretty crowded we did not recognize anyone we knew. For some reason someone had reached out and touched us. People should know the strength and ability to persevere, we draw from such acts of kindness. The reaching out of people like this helps give us the strength we need to move through the struggles that we face in our daily lives. Thanks to all of you who reach out to all of us. Oh, and by the way I did get lucky that night.
Our family on our 50th anniversary
Posted in Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Humor, Love, Observation, Reality, Sensitivity, Stuggling
Tagged 50th wedding anniversary, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, relationship, society
The doctor thought for a minute or so and said it sounds like restless leg syndrome. Which at first seemed pretty bizarre since I am paralyzed. Those are the symptoms of restless leg syndrome he reiterated. They had begun back in 1999 when I was injured. Over the years they had lessened in frequency, but I still had at least a couple of times a week. If I didn’t take the medication right away it led to night terrors and panic attacks that would possess me for hours.
Going for a Walk
As odd as it seemed just his defining the condition led to a decrease in frequency. I had learned early on to take Xanax at the earliest of symptoms otherwise it was impossible to avoid the onset. The drug would usually put me to sleep for several hours and I’d a wake disoriented. The decrease in frequency was a blessing in itself and started me wondering if there might be another way to deal with it now.
For a long time, prior to my injury, I had used imagining as a tool in my life. I realize I have already written about it a couple times (Visualization Worth Looking Into and In My Mind I’m Going To Carolina), but this was another use for the powerful practice. In thinking about it, I decided if my legs want to go for a walk, then why not take them for a walk. Early one morning I woke up around 4:30 am. As the initial feelings started; my legs feeling like cement, tingling and then progressing to the overwhelming feeling to move them, I closed my eyes and visualized myself swinging my legs off the bed and onto the floor. Next it was step by mental step walking down the hall and outside. I could not believe how easy it was and how satisfying it was physically and more important mentally. Since that night I have gone jogging and even rode my bike. However, the greatest benefit is that I have not had a recurrence of the syndrome in a couple of months.
The mind is a powerful asset.
Posted in Ability, Attitude, Behavior, Creative Ideas, Disability, Education, Reality, Sensitivity, Simple Solution, Stuggling
Tagged adapting, control, life lesson, lifestyle, physically challenged, quadriplegia, using your mind
Turkey season in upstate New York has been open for a week now. I’ve been able to get out five days and have probably averaged about 5 1/2 hours of hunting time each day. Since the season began I have seen only three hens and they were quite a ways away. It’s much more difficult to hunt turkeys during the fall season. In the spring, both the hens and gobblers are moving most of the day. Hens wander off each day to lay an egg in their secluded nest and then returned to the Toms. After they have a clutch of 10 to 12 eggs they begin nesting and the gobblers start moving around looking for a female to breed. This makes them very susceptible to calling.
In the fall turkeys follow eating habits and rarely call to each other. So, it is extremely difficult to call them into range. The technique, able-bodied hunters use, is to move quickly through the woods until signs are found that the turkeys are near and then try to call them in. This is so difficult that many able-bodied hunters don’t bother hunting turkeys in the fall.
My friend Andy likes to say we are going to be sitting in our chairs all day anyway, so we might as well enjoy what we’re doing. It is that philosophy that takes me to the blind most days in the fall. Today was an exceptionally special day and I would like to share some of the “events” that nature chose to share with me. The blind I went to today is on the west side of a field that runs north and south. It was unusual that I arrived there around 9 o’clock as that’s quite early for me. The sun was coming up directly in front of me and treated me to several special sights. A heavy dew was on the grass in the field and the sunlight reflected off it looking like 1000 little twinkles. I was also aware that more than half of the field was covered with shadows created by the trees in the hedgerow across from me. While I was watching the shadows slowly grew smaller, but what was really wild was watching them move to my left as the sun slowly arced to my right. Neither of these was a fast process and you could almost see the shadows move slowly.
By noon I was getting extremely warm and began to be concerned about overheating. This process can lead to autonomic dyslexia, which can be a life-threatening emergency. I decided to leave. When I got home it was 76° and I knew I had made the right choice. It’s supposed to rain tomorrow, but Sunday is forecast to be sunny and in the mid-50s. There’s still a week of the season left and because I love being out so much I’ll try again.
Young gobbler walked by this blind shortly before season
Posted in Ability, Adapting Equipment, Attitude, Behavior, Birds, Determination, Disability, Education, Hunting, Nature, Observation, Reality, Recreation, Sensitivity
Tagged adapting, control, hunting, life lesson, physically challenged, quadriplegia, Recreation, using your mind
Take a minute and try, try hard, to imagine sitting in a chair for 12 hours (a day), 84 hours (a week), 2,520 hours (a month), 30,240 hours (a year), and 302,400 hours (a decade). I could keep going, but I hope by now you’ve got the point. This is not a “timeout” punishment. Can you imagine the repercussions today if the teacher made a child sit in a chair all day? It is also not cruel and unusual punishment that might take place in Guantánamo Bay. This is just a situation some of us in the disabled community find ourselves in. While in the chair you can’t leave to go to the bathroom or get up to go to the dinner table, you’re there till taken out. Thank God someone, a long time ago, figured out to put wheels on the chair so we can at least move around. Depending on the level of injury travel can be initiated with the hands, a joystick or a sip puff device. With a sip and puff device the individual controls the movement of the chair by sipping or puffing on a straw like device that is in their mouth.
Some individuals adjust to the situation better than others. Usually, it takes time. Looking back on my life prior to my injury I have the impression that rarely did I ever see individuals with serious disabilities acting happy. In my memory most seemed old and very unhappy (not you Ami). I purposely try to be animated and positive when out in public. Generally speaking, the other few wheelchair bound individuals I know often present in a similar manner.
At times, I wonder if some people in the able-bodied community misinterpret this behavior, thinking maybe it’s not that tough to be in a wheelchair. Often when thinking about this the words Bob Dylan sings in one of his songs comes to mind “Did you ever see the frowns on the jugglers and the clowns when they did their tricks for you?” To be in the chair day in and day out is anything but easy. Most people never see the struggles that go on physically and mentally each and every day. To have made the adjustment to living your life with value and dignity while dealing with a major disability is never easy. Every day is a struggle! Some days it’s easier to adjust than others. Some of the special days make most of the other days bearable. But let me assure you if you’re not in a chair you have no idea.
Posted in Ability, Attitude, Behavior, Community Inclusion, Determination, Disability, Education, Friends, Friendship, Observation, Reality, Sensitivity, The Struggle
Tagged adapting, control, life lesson, lifestyle, physically challenged, power wheelchair, quadriplegia, society