Support our supporters!

Being disabled sometimes means needing to ask for help. Unfortunately, those that help us -- family, friends, those that we love the most -- often feel that they don't have anyone to ask for help. Often they feel alone even though, according to the National Family Caregivers Association, they belong to a community of 65 million. Whether our reliance on others is temporary or permanent, a few months or life-long, it's important to remember that our supporters need our support too.

Whether full-time or part-time, it's important for caregivers to take a break now and then. Or better yet, to schedule a regular day off and allow themselves an indulgence from time to time. A walk in the park or an ice cream cone are inexpensive (and not too time-consuming) ways for caregivers to get some down time. A walk in the park with an ice cream cone -- and a dog -- is even better!

Most importantly, like us caregivers need someone to talk to who shares their questions and problems. It's common for caregivers to feel that they can't or shouldn't complain. "How can I complain about caring for someone I love? They need me so much," is often rationalization for subsuming their own needs and feelings. Caretakers need to be reassured that it's ok to have a bad day, or that it's ok to dislike emptying a chamber pot. It's hard work!

Just as there are support groups for amputees to share insight, advice and encouragement, support groups for caregivers provide a much-needed outlet to discuss common issues. Most communities now have local support groups for caregivers. Go online and google "caregiver support" plus the name of your town. Contact your local community center or senior center (even if you aren't a senior) and ask about local support groups. And there are lots of resources online. At medicare.gov, you will find information on a number of topics: financial help, legal assistance, planning and more, including this PDF download (printable brochure), "How can you care for yourself when you're caring for others?" The US Department of Health and Human Services' Agency on Aging offers online an explanation of the National Family Caregiver Support Program and links to additional agencies that conduct research and work to improve public policy.

In my quick search, I found some other more innovative online resources:

• Caregiver.com: An online feature provided by Today's Caregiver magazine. Includes online access to the current issue of the magazine, archives of their newsletter, an advice blog, links to local resources and more.
• Children as Caregivers: An article from caregiver.com about children and the physical and emotional stress kids experience as caregivers in a home with a disabled or chronically ill adult. Written by a registered nurse, it offers an interesting point of view that I hadn't considered.
• Caregiving.com: A collection of blogs by individuals who are caretakers of parents, children, grandparents, siblings, spouses, etc. This is a great resource for caretakers to read about others' experiences and also share their own. The site also offers downloadable podcasts and an internet talk show.
• Connecting Caregivers: three online resources provided by the National Family Caregivers Association include The Caregiver Story Project (you can share a story, read stories by others, and find a penpal), E-communities (linking caregivers in the same local area), and the Family Caregiver Forum (an online forum to ask and answer questions on a variety of related topics).

One of the nice things about all of these online resources is that you can look around and choose which one suits you best. You can take just a taste of each, watch from the sidelines, or jump right in. Have you found a particular resource that you enjoy interacting with (such as our own Amputee Empowerment Partners)? Please share it and your experience with us!


POSTED ON AMPUTEE EMPOWERMENT PARTNERS 22 JUL 2011, 09:15 AM

Kids say the darnedest things!

Walking down the sidewalk with a friend, we passed a young mother with her five-year old son. After we had gone a few steps further, I heard the little boy say, "Mommy, where's her leg?"

That is the most amusing and confounding remark I have ever heard in reaction to my missing leg. People have asked How? What? When? ...but never Where?

What are some of the difficult questions you've heard from children about your disability? The disabilities of others? And how do you answer them? 

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 22 JUL 2011, 09:15 AM

New socket, new day

I've had a new socket since last Thursday, one that I was awaiting with great anticipation. Now that I've been using it for a few days, I know that many of my hopes have been realized -- It fits well, in fact it feels 'right' -- snug all around but not too tight. But my greatest hope was dashed -- I didn't snap it on, jump up and run across the room. No spinning and twirling and jumping for joy. There was no miracle. No, my movements are still slow, small steps taken with great concentration and care.

My entire being is crying out for the ability to run across an open field, followed by my dog Tino, lightly scamper across the rocks in a stream, feeling cool water pass over my toes.

I KNOW I've made progress. I KNOW it's a long road. I KNOW it's slow, I have to take baby steps before I can run. But how long will it take? And what abilities will I have? Those are the questions that no one can answer.

I'm a positive person. I'm an optimist, I believe in the future. But sometimes doubt creeps in as I realize that I don't know what the outcomes will be and that fear makes me doubt the rosy future that I normally believe in. I have learned that those doubts are part of me, as much as my hopes and dreams are a part of me. And I can choose which to believe.

What I do know is that even though I can't predict the future, I can do a lot to make my future dreams come true. For example, if I don't take baby steps, I will never learn to run. If I don't practice swimming laps in the pool, I will never be able to swim across Lake George. If I don't believe in my own abilities, I will never reach my goals.

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 22 JUL 2011, 09:15 AM

Some days are better than others

Let's face it -- some days I wake up and just feel lousy. The alarm goes off but I'm still tired, I want to sleep. My body aches all over. The dog barks, wanting to go out, and I really don't feel like getting up and out to take him for a walk. Can't I just roll over, go back to sleep, and dream it all away? Some days it's just all of the tiny little extra steps that wear me down. For me to get up and out of the house in the morning, it just takes longer than it did when I was able-bodied--and some of this will never change. 

I've always enjoyed slow mornings. I'm not one of those people who jumps out of bed, raring to go. I'm fuzzy-headed and want to spend 30 minutes drinking coffee and reading the newspaper before I even speak to another human being. Then I like to exercise (I used to run three miles or do an hour-long yoga routine), shower and get dressed. When I was self-employed, I usually started work at 10am.

As an amputee, everything takes longer. Morning coffee? Try walking around with a cup of coffee in your hand--on one leg. Showering? Just be careful while shampooing one-handed, holding a grab bar with the other. And putting on lotion afterward, I have to sit still, no walking into the kitchen for that second cup of coffee while I rub my hands together. Getting dressed, I have to follow a strict protocol: after making sure that all items are within reach, first put the pants on the prosthesis, followed by sock and shoe. Next, don the liner (and for me a second liner), then step into the other pant leg and put on sock and shoe. This is done sitting, with the prosthesis balanced between my legs and my pants likely dropping to the floor (which encourages good housekeeping). Next I stand up to don the prosthesis, trying to hold up my pants with one hand, steady myself with another by holding onto a chair or table, and simultaneously somehow using both hands to hold the prosthesis upright (usually my pants end up on the floor again). Once the pin is inserted and I have a secure fit, I can bend over and pull up my pants. Depending on the shirt I'm wearing that day, my camisole is tucked in or pulled over my pants (I usually wear a camisole because it makes my scarred belly feel protected). Tucking it in sometimes requires dropping my pants again.

As you can tell, this--pants on the floor--is one of my pet peeves. Especially when traveling and using public restrooms, I get very annoyed at having to drop my pants. I've figured out many ways to bunch up my clothes, brace myself against the wall of a stall or otherwise contort myself to avoid letting my pants fall onto the public restroom floor (yuk!).

So some mornings I don't want to face all of the petty annoyances that I have to experience in order to get out and face the world in the morning. Some days I'd rather stay in my pajamas and stay in bed. Some days I get pretty close to that (some days I work from home), lounging in shorts and t-shirts. But except for those days, I do get up and get ready and get out. I know that it's necessary for me to do it every day or soon I would not be doing it at all. It's one of the small steps in my slow recovery to return to full functioning. And no one can make that happen but me.

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 21 JUL 2011, 02:55 PM

Dog park

Every morning I take my dog Tino, a 20 lb Mini Schnauzer, to the local dog park. I've found the regulars to be an eclectic mix -- a programmer, an aerospace engineer, a single mother of twin boys -- but they all have in common a love of dogs and a friendly attitude. Even though I've been going to the park for only three months, everyone seems to know me already. I suppose I'm hard to miss: I'm an AKA and have been on crutches for most of that time. It must be quite a spectacle, seeing me crutching around the one acre wooded park following Tino. My phone is in the front pocket of my cargo pants, a headset usually in my right ear, and colorful plastic bags left over from the previous Sunday's New York Times poke out of the other pockets.

Our visits to the park follow a predictable routine. At the entrance gate, Tino barks like mad to announce his arrival. Next he trots around the perimeter as if he were a sentry on duty, stopping to mark every tree and inspect all of the rocks (and marks most of them too). Three times I stoop to pick up after him; after that I know it's safe to let him wander without having to clean up after him again. Then I'll take a few minutes to check email or make a quick phone call before joining the other dog owners around a picnic table.

One of the regulars is also an amputee, an older man with two white German Shepherds. We met the first week I visited the park, and I learned that he's been an amputee since 1956. During the first couple of times we met we compared notes about prostheses and prosthetists, and talked about healing and tips for keeping liners clean. Now we've moved on to discussion of ordinary matters like our respective plans for summer vacation and what books we're reading now, but I will always treasure that opening conversation, the immediate intimacy and openness we both allowed, despite being strangers, because of the odd condition that we share.

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 13 JUL 2011, 11:00 PM

Controlled fall

I've received advice from more than one amputee about falling -- 'tuck and roll,' they say, or 'learn to control your fall,' so I won't get hurt. During the past two years living without a leg and (mostly) without a prosthesis, I've been getting around on crutches. At home I'm in a wheelchair most of the time and sometimes will hop across the room (or rather I did, until I learned recently that hopping is especially dangerous and damaging to joints).

Before I lost my leg I was an active skier (50+ days on the mountain each winter) and mountain biker in the Rocky Mountains and red rock desert of Colorado, Utah and Arizona. Both of these sports are essentially a series of controlled falls. You point yourself downhill and through a series of technical maneuvers, balance and plain old-fashioned luck, you guide you fall yet inevitably you move downhill; you experience the thrill of pushing your physical limits while in the grip of gravity. 

Now my daily mobility is also dependent on gravity. Sometimes the movements feel similar to my past activities, but now it's a different game I play with gravity. Sometimes I use gravity to pull me down and forward, as when I'm moving from wheelchair to sofa. Other times I have to pull against it, lifting myself up and out of a chair, but then I'll use the momentum to continue to propel myself forward, as when taking steps with crutches. Sometimes I feel out of balance and almost out of control, as if I'm taking big chances to rely on my balance and land on my target seat. Yet so far I've fallen fewer times than I can count on one hand and haven't had any injuries worse than a big bruise on my behind.

All of these experiences, this playing with gravity and learning to fall safely, give me insight into re-learning how to walk. A proper gait includes fully weighting my left leg (prosthesis) to trigger the knee function. Learning to walk down a slope or down stairs step-over-step using the C-leg is a more intense act of trust, requiring reliance on the prosthetic knee to fully support my body weight while I move through mid-air.

The better I understand the functionality of my new prosthesis and my new physical limits, and the more experience I have using my prosthesis, the better I understand how to use my new 'gear' to play with gravity and learn to once again enjoy the controlled fall.

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 9 JUL 2011, 08:44 PM

Will "Bionic Bodies" Offer High-Tech Hope to the Disabled?

On June 28, PBS Newshour ran a segment about technological advances in prostheses -- the use of "bionics" -- that are now being tested with real people (you can view the segment online). The word "bionics" is gradually becoming accepted among researchers as a descriptor of the fusion of biology and electronics -- an apt application for advanced technology prostheses. In the segment, they talk about advances that have come out of military research (including the arm created by Dean Kamen, funded by DARPA). Technologies that aid mobility, manipulation, vision and sight are demonstrated. I highly recommend viewing the piece.

An avid supporter of technology and research, I have high hopes that someday I too will personally benefit -- that in the future my movements will become more and more natural and that I will be able to do more of what I did before. (Ah -- if I could once again ride my mountain bike through the aspen groves of the San Juan Mountains...) For all disabled people, this could improve quality of life and increase our ability to contribute to society.

Whenever the advanced capabilities of new prosthetic limbs are compared to natural limbs, however, I confess I feel a bit angry. This new stuff is amazing and wonderful, yet in the excitement and celebration of the new achievements there needs to be an acknowledgment that there is nothing like the real thing, that there is no real substitute. In the PBS Newshour segment, I was pleased to hear Dean Kamen admit "I don't know anybody today that would say, 'yeah, I'd rather have your arm than the original equipment'," as he raised his hand and wiggled his fingers.

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 30 JUN 2011, 01:30 PM

"Merging Man and Machine: The Bionic Age," National Geographic, January 2010

If you've already educated yourself about the prosthetic options that are available and those that we'll see in the not-too-distant future, then this article won't offer any surprises. But it offers an easy read and great graphics for educating others -- useful for amputees to share with family and friends. It has explanations of how advances in technology have helped to create better prostheses. For example, in a "bionic" arm, neural impulses are transmitted to electrodes that then trigger muscle movements in the shoulder or upper arm; electrodes placed on those muscles capture the brain's impulses and relay those commands via wires to motors that operate the elbow, wrist and fingers. Similarly, neural implant technology is used to help the deaf and blind. View the entire article online at NationalGeographic.com.

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 27 JUN 2011, 08:34 PM

I'm now a featured blogger on Amputee Empowerment Partners

I was recently invited by Carrie Davis, founder of Amputee Empowerment Partners, to be a featured blogger on this social networking site created especially for amputees, families, caregivers and friends. AEP was founded as a safe place for people to share their feelings, thoughts, ideas and resources. I was introduced to the site by another AKA, Todd, who I met at the monthly Gaylord Hospital amputee support group meeting. Not sure what to expect, I joined the site and before I knew it I was posting queries about knee technology and offering support to others. There are two million amputees in the U.S., and over half of those are lower limb amputees, yet I the first amputee I ever met was myself. It's easy to feel isolated and unique -- and difficult to remember that there are a million people out there who have had a similar experience.
I'm honored to be selected as a featured blogger and because AEP is a members-only site, I hope to share my posts here as well. Of course, you can also join AEP.

Loving skiing again

On Saturday I joined the Gaylord Adaptive Sports Association on a ski trip to Bromley Mountain in Vermont. Because of my hospitalization in November, I've missed most of the ski season. I also have had mixed feelings about skiing again. It had been something I truly loved to do, and I knew it would never be the same. I learned to ski when I was about six years old. I remember pulling on my shiny black ski boots, lacing them up tight, strapping on my little wooden skis (painted blue with red and white stripes), snapping into the bear-trap bindings, climbing up the slope in our backyard (at the farm) and sliding down again. Maybe that's just a romantic memory, but it is true that I have been skiing for over 40 years.


Anyway, last year I learned that 3-track skiing was HARD. I could barely make it down the bunny hill without my legs burning from the effort. I was crippled for days afterward, limping along from my sore muscles. So I was concerned about suffering again, about not being able to recapture the grace and pleasure of doing something really well, and also just hurting while trying to make my way down the gentle slope at the ski mountain and then recovering once I got back home.


Well, I had a great time. Today my calf is a bit sore, right in the meat of the muscle, and a little soreness in my forearms, but that is about it. What a relief! I guess I'm stronger than I thought. It was difficult, you better believe it, but I had fun. Now I better understand how the equipment works; the snow was warm, pure corn snow, which slowed me down (that's a good thing); and it was pure joy to glide down the slope. We did several runs on the bunny slope, then I graduated to the longer lift and had time for one long easy run.

I didn't get any video taken this time, but I'm sure it looked much the same as last year, so you can always revisit last year's video:



The entire staff at Bromley Mountain is terrific. Nancy, my instructor, and Jason, her teenage assistant, were warm, attentive and gave me helpful tips to improve my technique. They were aways right beside me when I took a tumble. They respected my request to try to do things on my own but were right there when I needed help. Joe, the manager of the adaptive program at Bromley, was also very accommodating and offered useful advice about finding my own gear, and invited all of us to return again. Bromley has a terrific team! (And they're all volunteers.)