Tag Archives: Caregiver

Life As An Iguana

If you’ve been watching the news during the recent invasion of arctic air deep into the United States, you’ve probably seen or heard of iguanas in Florida falling out of the trees seemingly frozen to death. However, wildlife experts cautioned against making the mistaken assumption that these animals are dead. While there seems to be no respiration or heartbeat they are alive and if the weather warms up in a few days they will come back to life and resume their normal activities. What is causing this phenomenon is a condition known as poikilothermic. Poikilotherm is a characteristic among most reptiles in which their body temperature is determined by their environment rather than by their body’s ability to produce heat. They are cold blooded. When the iguana’s temperature drops below 30 degrees they can no longer carry on normal activities including holding on to a branch. We, on the other hand, are members of a group of animals who are known as homeotherms (warm blooded) meaning our body temperature is controlled by the body itself regardless of the environment we happen to be in. Being able to regulate body temperature is a major reason humans are found all over the world regardless of climate type.

Frozen Iguana in Florida

Frozen Iguana in Florida

Iguana fallen out of tree

Iguana fallen out of tree

Quadriplegia brings many changes to the body most of which able-bodied people are totally unaware of. One of the most serious is that our body loses the ability to control its temperature. This can lead to an extremely serious condition known as Autonomic Dysreflexia which can be life-threatening very quickly. The body of someone who has become severely paralyzed loses the ability to sweat or shiver. Each of these body functions is critical in helping to regulate body temperature. For a person with quadriplegia on a warm day their body cannot prevent its temperature from rising. Worse than that is the individual has no idea that his temperature is reaching a critical point. This threat forces many of us to spend much of a beautiful sunny day indoors. A cold environment causes a lowering of body temperature which is just as serious. Unfortunately, the temperatures do not even have to be extreme for these conditions to occur.

Another effect of this phenomena is that a person with quadriplegia is almost always cold. Even on relatively warm days unless they are in direct sunlight their bodies give them the sense of being cold. Probably 360 days a year I can be found with a knit hat on my head and at night when I go to sleep, I always have a small hand towel draped over my head. It’s hard to understand how a body which is supposed to have little actual feeling can have the sense of so much phantom feeling and pain.

Soaking Up The Sun

Soaking Up The Sun

Normally when iguanas wake up in the morning they make their way to a spot that has direct sunlight and remain there until their body temperature rises high enough for them to pursue their effort to secure food. Just like iguanas when I first get up on a warm day I go out and sit in the sun and rejoice as my body warms up. While you will not find quadriplegics dropping out of the trees on a cold day you can bet they are always struggling to stay warm.

Life As An Iguana

Life As An Iguana

Open Letter to A Good Friend

Steve & me at Payne LakeMaybe by explaining it to you I can come to understand it better myself. I have a lot of sadness. How it presents in my mind is influenced by many factors. I’m not sure, but it seems to be becoming more prevalent either with growing older or as my years as a quadriplegic increase or both. I find myself longing for some of the abilities of my former life, like independence, freedom, spontaneity and self-reliance. Truly, if I have any part of these they are mere shadows of what they used to be. Oh, I forgot the most important one is control. That’s the issue! What control do I have in my life? Really?

Mental control, I feel, I have more of and most of the time it allows me to keep the other at a distance. Physical control, however, of my overall environment is really lacking. What I can do by myself is limited. Within a mile of my house in either direction are steep hills which once down I could not get back up. To leave, in the van, means someone must be driving me. My four-wheel drive chair, even in my local environment, also has limited physical boundaries. Most of the activities away from home require a supporting cast while activities in the home also require occasional assistance now and then.

At times, when these limiting factors seem to become overwhelming and I feel things are out of control I tend to become passive aggressive a condition I often had to deal with with my special education students Defined on Google as: of or denoting a type of behavior or personality characterized by indirect resistance to the demands of others and an avoidance of direct confrontation, as in procrastinating, pouting, or misplacing important materials.

Commonly, I will respond negatively taking action over the things I do have control of, even though at the time I know the action is not in my best interest. Most often it involves cancelling doctor appointments, my participation in activities or events I have been preparing for and really want to be a part of or just refusing to do what I should do. I feel better briefly and then wonder what the hell did I do that for and my only thought is “Because I can.”

An Asset For Improving Your Life

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

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.

Dreams Really Can Come True

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.

Marge

Marge

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

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.

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.

Another Testimony to the Role Nurses Play

In response to my latest blog Nurses I got the following email from a former student of mine who has had many challenges in his life. He has given me his permission to blog it.

“I saw your latest post about nurses and I couldn’t agree with you more. When I was in Boston at Dana Farber I was on 6A which was the bone marrow transplant floor and I had a few special nurses that definitely made a difference for me. They’re a special a breed of nurses as you said and they are definitely different from the general practitioner nurses at the local doc’s offices.

6A is a floor where they see a lot of people who don’t make it and I understand I almost didn’t make it a couple of times myself. It’s got to be very tough for them and I think sometimes they go under-appreciated even from the patients they care for. Although all the nurses on the floor were great there are 3 specifically that stand out for me personally and their names were Nori, Kim and Kim. Unfortunately only two of the three nurses were there one of the Kim’s was not there this visit.

Nori, Dan and Kim

Nori, Dan and Kim

I think there are patients who once they leave that floor never want to see it again because they only have bad memories from there. Personally I make it a point to stop by and see them every year and I enjoy going back there to visit. I think they get a lot out of seeing the fruits of their labor and appreciate it very much when patients return still alive and looking a little different from when they saw them last.

I’m on an annual visit schedule at Dana Faber now and I remember when I was there 2 years ago for my appointment none of my nurses were there. This of course was not good for my mental happiness and I was extremely disappointed but luckily when I went back there last month 2 out of the 3 were there, Nori and Kim. I’ll send you a picture so I can show them off.”

Nurses Do You Realize?

Can you possibly understand the role you play in your patients’ lives? I received a Christmas card the other day (February 10) from a woman I haven’t seen in probably 14 years. She played a critical role in my life 17 years ago when I was a rehabilitation patient at Craig Hospital. I was so scared when I got there. My stay at Craig was almost 5 months because of the stage four pressure wound on my sacrum. It was the result of being strapped to a backboard for over 36 hours. Most of the first 3 months were spent cleaning the wound to get it ready for skin flap surgery. Much of this time I was unable to speak because of the tracheotomy.

Marsha  (your hair looks fine)

Marsha (your hair looks fine)

A young woman named Marsha was one of my nurses. She was beautiful, funny and had an infectious laugh. She provided my care in a manner that made me feel special and safe. We have kept in touch since I left and even saw each other once when I went back for a reevaluation. I often wonder if she has any idea the critical role she played in my recovery. She has since left Craig and has a family, but still lives in the Denver area.

Marsha work days, but the most difficult time for me was during the night. I had become afraid of the dark and absolutely petrified to be alone. I had a boom box which my wife loaded with CDs before she left. Everything was manageable until the music shut off. In a matter of minutes I would have full-blown night terrors which turned me into a raving maniac. It got so bad that the nurses would wheel my bed out to the nurses station so they didn’t have to continually come into my room to calm me down. There was another young nurse who worked nights. I have long since forgotten her name. I can still hear her soothing voice as she tried to calm my hysteria. Things were always a little bit better when she was on duty. When I returned to Craig for a reevaluation I was saddened to find out that she had left and joined a traveling nurses group. In a wonderful effort to calm my fears she and Marcia bought two packages of the luminous stars and pasted them on the ceiling over my bed. At night the stars would radiate light for a while and then gradually dim and turned dark. When I was getting ready to come home, she came and had her picture taken with me and told me in a soft voice that she had only been a nurse for about six weeks. I was amazed.

Night Nurse

Night Nurse

When my wife and I were told at Craig that my quadriplegia would require someone to come to my house daily to help with my needs, get me dressed and in a wheelchair I was dumbfounded. I had always been a very private individual and prided myself on my independence and self-reliance. The thought of a stranger coming into my house every day was more than I could fathom. Rhonda began working for us about a year after I came home. She’s worked now for more than 16 years and has become a part of our family. Her job description has grown to much more than that of a nurse. She is always willing to take part in my little adventures and to step up when I need help. One good example of this is the day she drove into my neighbor’s field hooked a tow strap on my wheelchair, which had become mired in the mud, and pulled me out with her four-wheel-drive truck.

Rhonda

Rhonda

I wonder if nurses know the critical role they play in their patient’s life. I am positive my rehabilitation would not have worked out as well as it did without Marcia and the other nurse from the night shift. Rhonda’s always willing to help attitude, has enabled me to pursue activities I never would be able to do otherwise. I look at the role these women played in my life and wonder if they can truly grasp how critical their care and support really is.

Unique Opportunity

In August Handihelp was part of an exhibit put on by the Inclusive Recreation Resource Center at the Outdoor Adventure Day at Fort Drum. It was a great day! There were over 30 exhibitors which ranged from the Woodsman Team from the Environmental School of Forestry from Syracuse University to Rangers from the NYS Department of Environmental Conservation.

We had the opportunity to talk to a large number of people, but my interaction with one gentleman proved to be extremely interesting and fruitful. Although he was in civilian clothes I was pretty sure that he was a soldier. He seemed very interested in the adaptations I had on display and the fact that I was also a motivational speaker. When he got ready to leave, he told me he was a chaplain for the Warrior Transition Unit and asked if I would be willing to come and speak to them. Once in a while I had contacts similar to this, but it seemed like nothing ever came of them, but this time it was going to be different. About a week later I got an email from him inviting me to come and speak to the Wounded Warriors.

Flyer

Flyer

There will be a luncheon on Friday, October 16th, after which I will be able to interact with the soldiers. I am truly humbled and honored to be given this very unique opportunity. I want to thank the soldiers for their service and the sacrifice they have made for our country and our way of life. I can think of no honor greater than being able to help them make a smooth transition back to civilian life regardless of their disability.

Talking with a visitor

Talking with a visitor

The Chaplain

The Chaplain and his son