When I became the human component of a service dog team three years ago, it was the beginning of a completely new independent life.
Even though I was a competent dog owner for many years and felt had a good grasp of dog behaviors and living with dogs I found that a service dog took a bit more work and adjustment because of the level of obedience and skill level they are asked to perform on a daily basis.
As time with my dog partner passed, tasks that once took active planning on my part, became second nature and when I think back to those first few weeks or months it makes me smile because the things that were so hard for me to do I can now do without a second thought.
But as I was cruising through life with my four-footed assistant, a growing concern to myself and my doctors began to move to the forefront of my daily life.The number of falls I was having as well as my overall pain and discomfort was becoming a hindrance to me and taking a toll on the quality of my life. Now it seemed my ankles, knees, as well as my lower back were all trying to one-up each other as most painful, and I usually had scrapes and bruises from falling.
My doctor, once again, begin giving a not-so-subtle push towards getting a wheelchair. He felt it would help in preserving my energy as well as the wear and tear of my body and hopefully reduce the number of falls I have since most of them were caused by fatigue. Falling had become so commonplace, I really didn’t think they were all that dangerous despite the bruises and abrasions but when my doctor heard I had hit my head after falling in my bedroom I was handed a prescription for a wheelchair.
The idea of a wheelchair wasn’t new. As a child I remembered doctors telling my parents that when I was older a wheelchair would be an option for me, and it had been suggested again years ago after I’d been seeing a physiatrist but I didn’t feel I needed it just then, and even after getting the prescription, it was months before I acted on it.
I have since been in contact with a doctor who is more familiar with cerebral palsy and have learned that what I’m experiencing is a condition known as Post Impairment Syndrome. Cerebral palsy in itself does not get worse as you age, however because of the long term stresses in joints, as well as your muscular and skeletal and cardiovascular systems being under constant stress, there is a whole crop of physical issues, and premature aging that begin a new set of complications. Weakness, increased pain, fatigue, muscle loss, Arthritis, and problems due to overuse or strain on joints are common. I was told again that people with cerebral palsy use 3 to 5 times more energy than an able-bodied person to do the same tasks. This doctor stated that approximately 40% of adults with Cerebral Palsy begin using a wheelchair by the age of 50 and those numbers increase with age. The lifespan of those with CP are close to average depending on the severity.
My upper body strength tested better than average and my lower body strength tested far below average which was not a surprise to me but it was good to know that my feelings on my energy and strength deficiencies were not just “in my head” but a fact, and thinking that I was tired because I “am not active enough” was completely off base.
This doctor, after performing strength tests and measuring the amount of flexibility I had as well as watching me walk and perform basic tasks (such as standing from a seated position) stated he was surprised that I had “held out as long as I had” without using more aids especially considering that I work full-time and lived alone.
So after many months of putting it off, I begin what was to be a long journey of becoming a wheelchair owner/user.
Once I got my chair, my first inclination was to use it only when I was feeling “bad” for example if I had had a health issue like the flu or other such virus that had compromised my strength I would use the chair until I recovered.
When I picked up my chair ATP people suggested I use it and become used to it as soon as possible and that way when I did feel that I needed it I would be comfortable in maneuvering it in different situations. I had no idea what was going to happen: after the first couple of weeks of just learning to get around and basic skills like how to push in a straight line or turn corners nicely I became aware of something that really surprised me; I knew I had been tired to the point of going home after work and feeding my dogs and going to sleep and spending at least one full day of my weekend asleep recovering as it were from the stresses of walking during the week, but I hadn’t really realized the amount of fatigue and pain I had been living with until I started using the chair. Because my upper body was so much stronger at propelling myself than my lower body had ever been, my energy level was almost immediately, obviously improved.
I went from on average three falls a month to less than one. In the four months that I have been using my wheelchair I have fallen two times; once being knocked over by my pet (non service) dog, and the other after being very tired after doing yard work.
My pain levels have also decreased significantly. My ankles, knees, and lower back no longer need the same amount of pain relief or careful babying they once did. It’s not 100% a cure-all by any means, but it has improved my physical mobility far more than I imagined it would.
I have become completely comfortable using my chair during my work week and although my experiences away from my office are still limited, I expect to increase my use and learn and perfect new skills. I discovered my leg spasms caused my feet to move forward off the footrest, when I’m standing or in bed they cause pain and my legs to jerk, but when my feet were off the footrest the forward momentum was hard to maintain. I added a strap that sits across the front of my legs that prevents my feet from moving too far forward and it’s made a huge improvement.
Although I have discovered very positive aspects to using a wheelchair, I have also discovered a few that aren’t so great.
When you go through your daily life with a service dog you learn that things take longer. Getting ready to go somewhere, loading up in the truck, dealing with people who want to stop and talk about your dog or their dog, and just generally the care and time it takes to do things with a dog at your side. Add to that a wheelchair and you have a whole new set of challenges.
I arrive to work the same time in the morning that I used to however, just getting ready to get started takes longer. Unloading the chair from the back of my truck, securing any items that I need to take with me as well as the safe unloading of my service dog takes time.
The simple task of going through doorways has the extra challenge of maneuvering a wheelchair and a dog, often with item in my lap and a drink in my drink holder. Based on where I am going and what is in front or behind me as well as the way the door is constructed are all things that I consider before going through a doorway. My dog was not trained to work beside the chair because I didn’t use one when she was placed with me, so we have both had to make adjustments and learn new ways of doing things when I am using it. Sometimes I have Hope go ahead of me through doorways, another times she goes behind. Again it all depends on the situation.
The amount of space we take up has changed too. When going down narrow hallways at work a chair and a dog take up more space than a person and a dog.
One factor I had no way of anticipating was when I use my chair I am virtually silent. When I walk I sometimes compare myself to a horse clomping. Even when I am trying to be quiet there is no way that you would not know that I was approaching. In my chair however, unless you hear Hopes feet or her tags, I am able to sneak up on someone, so I have actually had to learn to be more aware of doorways and areas where someone could step out suddenly. I have to admit I really like the idea of being quiet as I move but it also comes with a new way of thinking.
It would be pretty embarrassing to take out my supervisor as they stepped out of their office!
Before using my chair many people would go out of their way to ask if I needed help, now, people seem to expect I need assistance with everything.
I made it a point to ask my coworkers not to assist me unless I specifically asked for help because I wanted to learn to do things on my own especially at the beginning. I have found many people especially think that I cannot open a door from my wheelchair, and are actually surprised when I tell them that it’s easier for me to do it myself then to have it opened for me because I can use the handle and doorframe to move myself through the door.
Having my service dog learn the place and speed at which I want her to heel in was a learning curve for both of us. Even when we were going along at a nice pace and I felt she was in a good position I found when I turned the chair to make a left-hand turn I was often close to running over toes. So Hope has learned to heal at a different place when I use the chair then when we are walking. It’s not perfect yet, but we are getting there.
I have also taught her the task or command “Forward.” I wanted her to be able to assist me in a situation where I may be on a slight incline or in a spot that needed just a bit more strength or stability, so she is now able to pull me as I grasp her vest or vest handle.
She is quite happy that she is assisting more now that I’m using a chair with items I can’t reach or have dropped, opening doors, as well as bracing as I get out of my chair. She is so happy to work and probably wishes I began using a chair sooner because she has more to do.
I have yet to use my chair during my (mostly) once a week grocery shopping because of the amount of items I buy. Having Hope (usually wearing her mobility harness) and holding onto the cart handle are still sufficient for me at this point, but I have used my chair for work daily since I got it and when I go on longer outings or shopping for a few items at large home improvement or warehouse type stores I use it then too. Some stores are a challenge with overcrowded or narrow aisles (I’m talkin’ ‘bout you Kohl’s) but, just like everything else, it will get better with time and practice.
I guess one thing I hope that people will realize is that going from walking to a wheelchair is not something to be sad about. It is not giving up. It is not being defeated by a disability. It is not being “more disabled” than I used to be. For me it has been a completely positive addition to my life as far as my mobility and overall health is concerned. The only negatives I have found have actually been due to other peoples thoughts and perceptions about this change. I did not start using a chair to become special or to make a statement that my disability is more real than your disability, or more valid. I did not start using it because it looked cool or I liked the color (although I must admit it is an awesome looking chair) or wanted to go fast (although that’s been a plus too).
I started using it because I wanted to improve the quality of my life and it has done that. If it seems odd to you that I get excited over new components or my new wheels, I guess it’s just because you can’t feel how it feels to be in a body that is constantly fighting you for every movement. This chair has been like a cool drink of water when you’ve been out all day in the summer sun. It’s a relief to my tired, aching, demanding body, so yes, I do appreciate it and it can make me happy.
I am very grateful for the opportunity to have such tools at my disposal. I know I’ve been lucky.
So even though I cannot stop the hands of time I have discovered a new way of living that is proving to be beneficial and I hope it can help me enjoy many more productive and happy years.
The next time you see someone in a chair, don’t think of it in a negative way. Yes they may have a disability, or have been through an accident or illness, But they are also able to be more independent than their bodies would allow, and able to move and do many more things than most people would realize.
Physically, my life has not been easy. Emotionally, I want to do things myself and be able to rely on myself to do the things that everyone else is doing and I will continue to educate myself and explore options that could be beneficial in maintaining my independence and health. I’m a firm believer that the only limitations are those you set yourself. I choose to go beyond what was and is expected of me and if that includes paws and wheels to get me there then thats the way I’m going to do it.
I have even begun thinking about participating in “fun runs” in my chair and I would have never imagined I’d have the ability to do that until recently. We will see about that but it’s nice to even entertain such thoughts.