Have you tried alternative medical treatments? Have you had success?

Like most amputees, I suffer from non-specific chronic pain. Since I was released from the hospital, I've been on pain meds (Neurontin and Percocet). Though decreased, the daily dosage has plateaued. I still feel foggy and disoriented at times and would like to be able to stop or reduce further the meds I'm taking.

For the past six months, I've been receiving acupuncture treatments to relieve chronic pain in an attempt to reduce the daily dosage of pain meds I'm taking. Almost immediately, I was able to go down from four to three Percocet per day. That reduction in pain meds has improved my mental clarity (and reduced constipation related to pain meds), along with the unanticipated benefit of decreasing my anxiety level. For me, acupuncture treatments have been very beneficial. I've shared this information with my physicians -- and they're also happy to hear that my intake of pain meds has reduced.

Do you see a chiropractor? Use herbal medicine or homeopathy? If you're an amputee, I'd like to collect information based on your experiences with alternative medicine. Visit my survey "What is your experience with Complementary and Alternative Medicine?" -- it'll take just a few minutes of your time.

Results from the survey will be posted in January.

Survey Results: Has your self-image (as an amputee) changed over time?

Last month I posted a link to this survey -- and received 10 responses from the AEP community. I'm reposting this survey in the hopes that even more amputees will reply. I appreciate your time; if you could spend 60 seconds taking this brief survey, it will provide interesting data for further discussion.

So far, the results are 50/50 in response to the question "Since you became an amputee, how has your self-image changed?" 50% of respondents say "My self-image continues to change" and 50% of respondents say their self-image hasn't changed since they became an amputee.

How about you? If you're an amputee, I'd like to hear from you and share with others the transitions you have experienced -- Do you label yourself "disabled?" -- is "amputee" part of your self-image? I've created a brief survey asking the question "Since you became an amputee, how has your self-image changed?," and invite amputees share their experiences. After completing it, the results to date are provided; I will post final results in January. 

Click here to take the survey. (If you have already taken the survey, you will now be able to re-take it if you like.)

How has my self-image changed?

As a relatively recent amputee, and because of progress in my gait training, this has been on my mind lately. My self-image has changed since the day I woke up in the hospital and learned I was an amputee. I'd like to hear from others about the transitions they have experienced -- How do you identify yourself? Do you label yourself "disabled?" -- is "amputee" part of your self-image? I've created a brief survey asking the question "Since you became an amputee, how has your self-image changed?," and invite all amputees to take it. After completing it you will be able to view the results to date; I will post results in two weeks. Click here to take the survey.

Over time, my self-image has changed from freak to (relatively) normal, and for me "amputee" has become integral to my self-identity. Coming out of the hospital, I felt like a lump, a mutilated freak. I still had bandaged wounds and was too weak and uncoordinated to dress myself in anything but loose clothing with an elastic waist. (I'm sure many of you can relate.) My hair had been shorn and I weighed 89 lbs. My self-image was as an invalid, dependent upon others. Full rehabilitation seemed so distant that I couldn't image a future where I would be independent.

Gradually I became more mobile, my hair grew back, I returned to my regular weight, and eventually began to walk with a prosthesis. Anxious to look as normal as possible, I bought jeans as soon as I could. My self-image began to shift: now I was a disabled person in rehabilitation, I was making progress, I was able to think about the future.

Now that I am as physically "normal" looking as I am going to get, I am taking charge. I still walk kind of funny; my gait is slow and awkward and I use a cane. To make myself feel better, I try to look as good as possible physically -- I style my hair, wear makeup, make sure my outfits are put together. (I'm also trying to fit into the professional business world.) Sometimes I'll flaunt my prosthesis -- I don't feel that I have to cover it up -- but I confess that I dream of the day when no one will be able to tell I'm wearing it.

But it's not just about appearances. I enjoy being an advocate for amputees and the disabled. When asked questions about my prosthesis, for example, I happily answer. I use my disability to bring obstacles to the attention of business owners. I want to build awareness not just about disability, but also about ability. It's as if I'm saying, "Look at me, I'm disabled and I'm walking -- but if you take down these obstacles, you'll see me run!"

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 22 OCT 2011, 11:29 AM

Sunday Mornings

Sunday mornings I choose the blue mug. There's only one, it doesn't match the others, and it's smaller in size than the white mugs that are part of my regular set of dishes. I choose it on Sundays because I love the muted turquoise color and the shape -- it's not ordinary like my weekday mugs. 

On Sunday mornings I like to sit out back on my small porch, with my coffee and raisin bread toast and the Sunday New York Times. Maybe this was also one of my favorite things pre-accident, but now I savor it, as often as New England weather allows. 

Post-accident, my life has in some ways slowed down. I'm not racing down mountainsides on my bicycle, I'm not darting about the house doing 17 things at once: carrying fresh laundry upstairs and chasing the dog down stairs; in this way I've been forced to slow down post-accident. So I've chosen to not only enjoy the slower pace but savor it. Sunday morning coffee is one thing I love, along with crispy raisin bread toast. Sitting on the porch and watching fall sunlight glow behind colored leaves, or lying in bed awakened by a full moon's light shining through the tree branches. Rather than cursing my mid-night awakening, I welcome the beauty of the moonlight and the quietness of night. 

Maybe it's less of a slowing down and more of a conscious acknowledgment of my change from a life constantly in motion to one of stillness. And also accepting that change with grace. Every day I acknowledge moments that give me joy, and I pause to smile and enjoy: sharing warm hugs with close friends, snuggling with my dog, laughing out loud, getting lost in the pages of a thrilling novel.

The turquoise of my blue mug reminds me of different colors on different days. Some mornings it's the color of the summer sky, other times it's a perfect robins-egg blue, and today it reminds me of the sparkling Caribbean Sea. This morning the sun is shining through brilliantly colored Fall leaves, a crisp breeze blows through the trees, my dog is asleep beside me and wisps of steam curl upward from the blue mug of hot coffee in my hands.


POSTED ON AMPUTEE EMPOWERMENT PARTNERS 15 OCT 2011, 11:13 AM

Juggling, knitting and television

Sometimes it's startling how much my life has changed. Pre-accident, my evenings were spent hiking with the dog, followed by cocktails with friends and dinner on the evenings I wasn't training. Weekends were active, filled with mountain biking and rock climbing (often weekend getaways) in the summer and skiing in the winter. I have always enjoyed learning new things, and in those days it was often about learning new activities: having skied since I was five years old, I learned to snowboard at the age of 30; never having been good at rollerskating, I tried rollerblading as an adult. One summer weekend I was so determined to learn how to juggle that I stood outside for eight hours, practicing the same simple moves over and over again until I got it.

Now, post-accident, my time is spent in more sedentary activities. I don't complain about it anymore, but from time to time I recognize how the aspect changed every aspect of my life -- and I muse on the impact, both deep and superficial.

While recovering, I picked up knitting, a craft I learned as a small child. In my family, all of my aunts always had projects at their fingertips. At all family gatherings they were always working on something: needlepoint, embroidery, knitting, crocheting, rug hooking, etc. While I was still confined to bed, knitting seemed like a useful, constructive way to pass the time and now I'm hooked. The repetitive motion seems to put me in a meditative state, much the same way running or bicycling did before. While my body is occupied with physical motion, my mind is free to wander.

While in the hospital I also acquired the habit of watching television, a habit I still haven't kicked. In fact, I enjoy it tremendously, though tv programs are not the same as they used to be. Now I watch tv online, using Netflix orHulu or ESPN live. It's a completely different experience because I have to choose what I want to see rather than leaving it to babble on in the background. Now I can watch the full season of a series in a week (or less). I caught up on all of "30 Rock" and  three years of "Mad Men" in just a couple of weeks. The quality of programming, if you pick and choose, is quite high, I think. And knitting and television go together well.

Juggling has re-entered my life more recently. Now that I'm relearning how to walk, I've started juggling as part of my self-imposed at-home PT program. Because of residual muscle stiffness (hip flexor contractures) and scar tissue, I have difficulty standing up straight. And, like every new amputee, I need to practice fully weighting my prosthetic leg. Juggling seems a natural fit to fill both needs. I use soft, bean bag type juggling balls (I actually knitted some using cotton yarn, filled with small beans enclosed in a nylon sock) so that they won't roll away when I drop them (and, because I am re-learning to juggle at the same time I am re-learning to stand, I drop them often) and stand next to the sofa or bed so that I won't have to bend over all the way to the floor to pick them up. Juggling requires that I stand up straight and distribute my weight between both legs, shifting gently from side to side and front to back as I toss and catch the balls. It helps to build balance and is also a great workout for your arms.

So I am accommodating these changes well. Juggling is a terrific way to get exercise, it's highly entertaining and I feel as though I am building a skill. Knitting and television go hand in hand, both as sedentary activities that I enjoy in the evenings. And I also am happily productive: while watching a movie I can knit a complete baby hat!




POSTED ON AMPUTEE EMPOWERMENT PARTNERS 15 SEP 2011, 11:13 AM

TENNIS! US OPEN WHEELCHAIR FINALS TODAY & TOMORROW!

Are you a tennis fan? Today the US Open women's and men's singles finals will be played. 

Here's the schedule:

12pm, Court 11: Wheelchair Men's Singles - Finals

Shingo Kunieda(JPN)[1] vs. Stephane Houdet(FRA)

12pm, Court 7: Wheelchair Women's Singles - Finals

Esther Vergeer(NED)[1] vs. Aniek Van Koot(NED)

Sadly, you won't be able to watch it online (at least I haven't found it). Much of the US Open I've been able to watch at US Open Live -- but only the Juniors wheelchair finals were televised. 

YouTube has many wheelchair tennis clips available -- here is one official post from the 2011 US Open, the draw ceremony. Let's hope that video highlights of play will be posted too.


POSTED ON AMPUTEE EMPOWERMENT PARTNERS 11 SEP 2011, 11:13 AM

Traveling

Today I’m traveling to California (from Connecticut). It’s been a while since my last flight, since last August when I went to Miami. That was my first post-amputation flight. This is the second.

I give high marks to the Hartford, Connecticut, Bradley International airport. All of the staff were courteous, friendly and helpful. I got a wheelchair ride right away, no waiting, from the ticket counter to the gate. The Delta Airlines gate agent came over, introduced himself and offered his assistance. I visited the rest room (in wheelchair) and was happy to find a commodious handicapped stall. It took a bit of maneuvering to get the door closed (ultimately I used my cane), but once situated in the stall I had plenty of room to move around.

At the security checkpoint, I asked the TSA officer to be gentle. "My balance isn't very good," I explained, "last time, in Miami, I was almost knocked over by the officer." She smiled and agreed. The gate agent helped me board even before early boarding was announced. 

The airport has free wifi throughout, so I was able to download email and even do a little bit of writing while I waited. On board, the flight staff were friendly and helpful. I loosened the pin and slipped off my leg. I was wearing a dress, which made doffing my leg easier. It reseted under my skirt for the flight. I also brought a light shawl with me, planning to drape it over my lap if I needed more privacy.

All in all, I found that by allowing myself extra time, asking politely and giving people big smiles, it was not at all difficult soliciting help from others. Of course I hope that I always treat others kindly, but for this trip I was on my best behavior. It's true: a smile is contagious. Pass it on.

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 26 AUG 2011, 02:30 PM

Oscar Pistorius

I thought that this had been settled, but according to an August 14, 2011 article on insidethegames.biz, the scientists that did the evaluation in 2008 have had a falling out and new information was released.

In this later article, posted April 16, 2011 on insidethegames.biz, a key scientist involved in the research refutes the conclusion by Brueggemann in the August 14 article.


POSTED ON AMPUTEE EMPOWERMENT PARTNERS 26 AUG 2011, 01:30 PM

Get back to work!

I went back to work as soon as I could following my injury and amputation. It was helpful for me to have something other than my physical rehab to focus on. Because the work I do is primarily intellectual, such as research, analysis and writing, my schedule can be flexible. As long as I have a laptop and high speed internet access, I can work from home -- which was very convenient at the time since my mobility was limited. 

How does work fit into your life? Did you return to your previous job? Have you been out of work for a long time? Were your capabilities changed so much as a result of your amputation that you can't do work that you did before? Or did you ultimately return to the same tasks and career path? 

Please -- share your experiences. I look forward to hearing how you've gotten back to work.

POSTED ON AMPUTEE EMPOWERMENT PARTNERS 17 AUG 2011, 10:25 PM

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