|Me And Julio with the Crutch
Julio and I standing with my left hand on his harness and right using the crutch. Julio's a yellow lab and I'm wearing a green sweater, jeans and black Mary Janes.
One of the aspects of Complex Regional Pain Syndrome which makes coping so challenging is that it tends to affect every aspect of a person's life. Mobility, employment, quality of life, hope and coping are all tested. I've had CRPS for about six and a half years and each day has been a challenge. But one of the biggest challenges I deal with is one not discussed in any book. That challenge is how to deal with the parts of CRPS which are unique to me as a person with a visual impairment. Since my CRPS is in my left leg, I find that mobility is one of those challenges. For two years, I was unable to walk with a support cane for any distance and only navigated my dorm room or apartment without assistance because the walker was too cumbersome to use in smaller spaces. Many people didn't realize that this limited Julio (my yellow lab Guide Dog from
Guide Dogs for the Blind
in how much guidance he could provide me. For those who are unfamiliar with guidework, a Guide Dog guides through the use of a harness (see the photograph for an example). The stiff handle on the dog's back and the fast speed at which we walk provides a rigid method of communication between dog and handler. Obviously, this requires one free hand (two if the dog needs to be given a tug on the leash to redirect the attention). Walkers are not known for freeing up hands, so all I could do was loop the leash around my wrist and let him attempt to guide using the leash. This is called leash guiding and it's not very safe at all. The leash is floppy and if the guide needs to back up or make any sudden move, say, to prevent the handler from being hit by a car, the floppy leash will not provide enough information for the handler.
When I think back on those two years, I remember a sense of powerlessness which added to my frustration, depression and anxiety about my pain. If I couldn't travel safely, how would i
- Get a job?
- Navigate new areas?
- Get to class on time?
- Get successor guide if something happened to Julio?
But recently, all of that has changed. we have been restored to our rightful place as a fully active Guide Dog team. I don't feel unsafe when I travel and I'm not worrying about retirement or future dogs as much. Even better, I know we look good as a team because we both feel good as a team!
So how did I get to this point? What can other handlers do if they face similar challenges? How can doctors, nurses, occupational therapists, physical therapists, social workers and other medical professionals help a team struggling in this way? To whom can a Guide Dog team turn if they are experiencing these challenges? Of course, my success story may not be true for anyone else. I speak only as a person who is blind and has CRPS. But there are some steps that can and should be taken and I feel that returning to guidework should be a goal every professional keeps in mind.
My Success Story
I was recently hospitalized for some medication changes. While in the hospital, I was permitted to be on an ambulatory unit as my body adjusted to the new changes. One of the best benefits for me was that I had more frequent access to a multi-disciplinary team including internal medicine doctors, pain specialists, psychiatrists, nurses, social workers, occupational therapists, physical therapists and staff who supported patients in making sure our stay was as beneficial and comfortable as possible. While there, I talked with the occupational therapists and nurses about my challenges with the walker and asked whether there might be other options. A physical therapist observed me, as did the nurses. I tried several one-handed walking aids including
- A Hemi-Walker
- A Quad cane which has four prongs on the bottom
- A straight support cane and
- A forearm crutch.
We first tried the Hemi-Walker, but I found it too difficult to coordinate the walker, my feet and Julio. I often sat the walker down on my right foot and found that it wasn't helpful. The four-pronged cane had a similar problem and didn't feel stable. I finally tried the forearm crutch, which looks like a regular cane but then goes up the arm to a cuff on the forearm. I'm told it's often used with partial spinal cord injuries and I've also seen it used with Cerebral Palsy. It's much more supportive than a cane, though less supportive than my regular walker was. Even so, it's enough support that I can walk with Julio at the fast speeds needed to keep some tension in the harness. I was allowed to practice with the forearm crutch for a weekend and nurses observed me for some of that time. I noted an immediate lift in my spirits feeling that harness in my hand again and was thrilled to see that Julio hadn't forgotten his skills. Like every team, we're a work in progress, but we're safe, confident and happy together.
So How Can I Help My Patients?
If you have a patient with a guide dog, be aware that they face challenges your other patients might not. Be willing to ask in a non-judgmental way if the illness or pain is problematic for the team. If your expertese isn't sufficient to address the problem, consider the multi-disciplinary approach. Ask the handler where the problem is. Realize, however, that the handler may be unable to talk to you about their challenges. This might be for several reasons; fear of the need to stop working with their dog, fear that it's their problem and they must handle it alone or a belief that the problem cannot be solved. There is also this unspoken fear, especially for those who don't have ownership of their guides, that they might lose the dog if they can't "get their act together". Honest communication and an understanding that what is said remains confidential can go a long way toward bridging these awkward feelings.
If you're evaluating a patient for the first time with their Guide, remember that speed does not equal pain. Even on my worst pain days, I still need to walk fast. Even on days when my leg has spasms, I still walk fast. It's not a conscious choice, it's engrained in how a handler thinks and moves with their dog. It's vital, then, to identify the problem and observe the team using the tool, skill or solution in a natural way. Taking a short, sedate walk down a short hall isn't enough. If you have access to loaner tools, consider that as an option if you think it's safe.
What Can I Do if I'm the Patient
As patients, especially those who see their condition worsening, it's easy to lose hope and feel powerless over the situation but there are several options available to you. The first is to request physical therapy, or some form of treatment to help you be as strong and as independent as possible. Occupational therapists are great about adapting things too. Another good resource is your Guide Dog school. Our schools want us to succeed and we often fear making that call for no reason. Why feel powerless any longer than you have to?
Make sure you have a team to help support you. It's important to accept the help you need to get back on your feet again. I know that's easier said than done. Mobility instructors may also be able to help you. Finally, continue to evaluate how the new tool or solution is working and report this to your team. Also, check whether your school has a program to help guide dog teams dealing with unique impairments. You can even aske your medical professionals and Guide Dog school to communicate if needed.
In essence, it really can take a whole village to bring a person and guide to teamwork, but is so worth it in the end. You can help your patients and yourself to regain that independence.
I'd like to credit my sister with the photo in this post. The photo shows me standing with left hand on harness and right arm on crutch. My sister also happens to have been my book cover designer for
Nickie's Nook: Sharing the Journey