Surviving Limb Loss

By | May 2, 2013 at 9:45 pm | No comments | Columns, Publisher’s Pick

Limb loss is not a topic of interest on most days and to most people.  But in the aftermath of the bombings at the Boston Marathon the level of interest and the need for understanding is heightened for those who were injured, their families and friends and co-workers.  At the present time there are twenty or more people who were injured in the bombing who have had to have amputations.  Each year, approximately 185,000 Americans undergo amputation of a limb and about 1,000 children are born with a limb difference.

Ironically the tragic events that took lives and limbs in Boston occurred during Limb Loss Awareness Month, which is promoted by the Amputee Coalition, a Virginia based nonprofit.   The Amputation Coalition’s mission is to reach out and empower people affected by limb loss to achieve their full potential through education, support and advocacy.

The life altering experience of losing a limb takes the invaluable resources of those who are experienced in limb loss education to provide post amputation support services for these new amputees.

Listening to the news one week after the bombing, a young female dance teacher who lost her leg below the knee is talking the talk of an amputee who realizes that her life is not over and has every reason to believe she will dance again thanks to the support services she received while in the hospital.

To date the Amputee Coalition has submitted proclamation requests to all 50 states, and has asked the President to recognize Limb Loss Awareness Month again this year. In the past two years they have 40 states that have gubernatorial proclamations, but they want to get the support of all 50 states.

Efforts to support children and adults who have experienced limb loss in the Inland Empire and Coachella Valley is extremely active due to the efforts of three organizations.

Amputee Connection of Redlands, coordinated by amputee Bill Nessel, meets monthly to provide support for amputees and their families.  They recently held an Open House for new and current members.  In a post-event email Bill indicated that they lost count of the number of attendees after 64, which included many returning and new members and double their monthly attendance.  Friendships were made, stories were shared and no doubt lives will be put back on track.

Through Bill and the Amputee Connection of Redlands, the Amputee Coalition selected Palm Desert as one of their national locations for their Limb Loss Education Day or LLED.  In collaboration with Amputee Connection, Palm Desert based nonprofit Incight hosted a day of education and adaptive sports for amputees and their families.  Dr. Roberta Cone, and amputee and psychologist for the San Diego VA Health Systems spoke about the psychology of limb loss.  Lee Cardon, an amputee and Certified Prosthetist and Orthotist for Hanger Prosthetics Rancho Mirage, spoke about prosthetics for cyclists.  The nonprofit Incight provided participants the opportunity to experience handcycling and Orthotic & Prosthetic Activities Foundation (OPAF) offered a tennis clinic for amputees and wheelchair users.

Bill has been collaborating with a third resource and nonprofit called Incight.  Incight has been promoting the education, employment, independence and networking of youth and young adults with disabilities since 2008.  In 2010 Incight set its sight on increasing the number of cyclists with disabilities who rode in the Tour de Palm Springs.  Then 68-year-old, Bill and two other amputees from Amputee Connection came to ride alongside Incight local amputee Clyde “Pops” Carter.  Returning every year for the next three years, Bill and Incight have increased the number of riders with disabilities to 70 including additional amputees and riders who are paraplegics or quadriplegics, blind or severely disabled.

Seventy-nine year old above the knee double amputee Joe Barajas rode in the Tour for the third year accompanied this year by his son Ruben, who had recently became an amputee.   Joe trekked along at his own speed but when he was unable to propel himself forward, his son would back into his handcycle and pedal for the both of them.

Incight, which received its classification by the US Olympic Committee as a Paralympic Sport Club, now offers monthly handcycling clinics and weekly rides for cyclists with disabilities across the valley.  In July 2013 Incight will hold it’s 2nd Annual Ice Sled Hockey Clinic, which will provide local youth with disabilities to receive instruction from US Hockey disabled hockey players.

In the fall 2013 Incight will be collaborating with the Desert Recreation District to conduct its 2nd Annual DisAbility Sports Festival.  This event will introduce our amputees and others disabilities to a wide arrange of adaptive sports.

Incight is currently seeking amputees and other people with disabilities to ride in the newly created Patriot Ride honoring our military and first responders.  Riders with amputations, spinal cord injuries or other mobility issues can ride one of Incight’s dozen handcycles in this ride.

Through the Tour de Palm Springs, Bill and Amputee Connection of Redlands raises funds to send children who have experienced limb loss to Camp No Limits.  CNL conducts these camps across the country with a local camp in Big Bear scheduled for June each year.

One of the most charismatic participants of Camp No Limits is triple amputee Cameron Clapp.  Cameron’s story is compelling and can be found all over the Internet. It is a story of alcohol and a large moving locomotive coming together in a most catastrophic way. But that is only where Cameron’s story begins. Today’s story is one of overcoming unimaginable odds and achieving more than anyone expected.

The kids at Camp No Limits gather around in a circle, sitting on the grass, as Cameron pulls out each of his prosthetic legs one by one from his duffle bag.    Each more unique than the next, and showing well-worn signs of their intended use, he explained the purpose of each. One is for walking. Another is for running.  And a third for swimming. Cameron passes the legs around the circle for each of the campers, who are also missing limbs, to see and touch. It is an unbelievable sight to see the excitement in the eyes of these young campers. The interest was not in the novelty but in the utility of the prosthetics they were holding. Each leg served a purpose. Each offered a different opportunity for mobility. Each brought with it a new level of freedom and independence and opportunities to climb a tree, ride a bike, or run a track.

The tragedy that follows an amputation is not as much the amputation itself as it is the belief by the amputee that their life is over.  Post surgery they are coping with the amputation itself, the shock of the reality of what has happened, phantom pain and ultimately isolating and paralyzing depression.

Amputee Coalition trains other amputees to become certified peer counselors for new amputees.  Incight volunteer Pops Carter is one of these counselors for the Coachella Valley.  Pops, who lost his leg in a motorcycle accident, visits new amputees while they are in the hospital or in their home to share his story and enlighten them on what they need to know as an amputee.

With the assistance of organizations like Amputee Connection of Redlands, Amputee Coalition and Incight amputees, new and experienced, come together to create what will become the amputee’s future – full of hope and possibility.
RESOURCES FOR AMPUTEES

Amputee Connection of Redlands
http://www.theamputeeconnection.org/
Contact: Bill Nessel 909.213.9099

Amputee Coalition
http://www.amputee-coalition.org/

Incight
www.incight.og
73-754 Highway 111 Suite C
Palm Desert, CA 92260
Contact: Judy May 760.674.2473

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