SUPPORT NETWORK
USA - EASTERN REGION

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USA - ROCKY MOUNTAIN REGION
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CANADA & AUSTRALIA
BILATERAL AMPUTEES & INTERNAL HEMIPELVECTOMIES


 

JUNE (Greensboro, North Carolina)
In 1941 when I was 10 years old, I had osteomyelitis in my right hip and left knee.  I had many surgeries to repair the damage and was in pretty good shape.  I married and had four children.  By 1975 both my knees were wearing out and I had a great deal of pain so I had total knee replacements in both knees and a hip replacement on my right side.  Then in 1982 I was on my way to work and had an automobile accident and broke the hip replacement.  When a new total hip was implanted I got a staff infection.  I kept that under control with antibiotics for seven years but then I had to have the hip amputated.  Even though my doctor felt I wouldn't be successful with prosthesis, I was determined to try and was able to walk with just the assistance of a cane.  The hip was amputated in 1989 and I'm now 78 years old.  I've started walking with crutches because my left knee has been replaced several times and I want to protect myself against falling.  I still use only a cane most of the time in my home.  I have a very active life.  I am in a deep water exercise class three days a week at the YMCA and I also do some work out in the fitness room.   I am an officer in the HA-HA Amputee Support Group in Greensboro, North Carolina.  I make peer visits to new amputees every chance I get.  Since my amputation I have made several overseas trips.

E-Mail: gsogwoman@triad.rr.com
 

TIM (Pennsylvania)
I had my hip-disarticulation surgery in 1980, now I'm 43 yrs old, a single father of two teenage daughters. I graduated from Slippery Rock University of Pa in 1986 with a degree in counseling. I've worked in the social work field since then. Currently I'm a vocational rehab counselor for the Pennsylvania Dept of Labor and Industry.  It's my job to assess people with disabilities for training/employment. I know first hand how difficult it is to start over, deal with issues of self esteem, self doubt etc. I love what I do, and find it very rewarding.
My interests outside of work are hiking, canoeing and spending time with my
daughters. Just this past year I was fitted with the "C" leg!!!! Oh what a
difference in what I can do now! For the first time I no longer "shudder"
when I see  a ramp of any pitch! I can walk soooo much better, especially
ramps, uneven surfaces and even steps can be taken step over step (with cane
and holding on to hand rail) what a difference.
Please let me know what I can do. I  believe I can be a valuable asset to any hp/hd regardless of their situation.
E-mail: tiflynn@state.pa.us
   
LINDA (Athens, Georgia)
I am a 45-year-old HP, am married & have a 12-year old son, two dogs, & two goats. I had my surgery in November of 1999 due to an osteosarcoma, in addition to heavy chemo treatments both before & after. Once I knew I had to give up my right leg to survive I decided that if I could at least learn how to navigate stairs & drive a car that I would be OK!  My then 4-year old son was a great motivator to be strong at that time, however my husband struggled with the shock of my amputation & it was not easy for the first few years. It took time, patience, & love to grow into our new life together, but we are closer today than ever. We were blessed with tremendous support from family, friends, & the company for whom I still work.
 
I love animals, gardening, photography, travel, & especially the outdoors. As an Air Force brat I’ve lived in Illinois, North Dakota, Japan, & Florida, & have traveled/backpacked as far as Alaska. My son is very active with baseball & Scouts, & as an adult Scout leader I accompany him on troop outings, including camping & canoeing. I earned a BA in Journalism from Georgia State University & work full time as a graphic designer. I am also active with my church & my sons school. I feel fortunate that I am able to do so much, more than I ever thought I would be able to do at first. Life is not over with amputation --- just different!  
 
I have a prosthesis but find that I am faster & much more comfortable without it, however I am open to researching the latest technological advances & may consider an updated design. I use forearm crutches & highly recommend Thomas Fettermans Tornado Tip crutch tips, especially with the Rain Boot for extra grip on slick surfaces. I use a special cushion to help me sit up straight & have one in my car & keep another at the dinner table. Some of my other favorite tools are a small island in my kitchen on wheels, so I can pull it over to the fridge or the counter as needed fingerless bicycle gloves to protect my hands from painful calluses from the crutches my single-strap backpack I use instead of a purse & my spill-proof coffee cup!  I also found Hangars book “You’re Not Alone” to be invaluable following my surgery, plus another wonderful book is Ellen Winchell's Coping With Limb Loss. But the best support is peer support --- as you’ve found right here!
 
I would be happy to hear from you if you have any questions or just want to talk to another mono-ped!     

E-Mail: lbell61862@yahoo.com
 

JOSH (Virginia)
Josh Sundquist used to be like any other nine-year-old. He loved to run, play soccer and hang out with his friends. But then he began experiencing pain in his left leg. The doctors discovered that he had a rare form of bone cancer, Ewing's Sarcoma, and he was given a fifty/fifty chance to live. When months of chemotherapy treatments didn't shrink the tumor, the decision was made to amputate Josh's leg at the hip.  "I knew it meant that I would have a harder time the rest of my life," Josh says. "But I also knew it was the best chance I had to live the rest of my life."
Now eight years off treatment and cured of cancer, he continues to overcome his disability on a daily basis. He is an avid mountain biker, swimmer and runner, but his favorite sport is skiing. Josh hopes to compete for the U.S., Disabled Ski Team in the Paralympics Games. Since his experience with cancer, Josh has spoken to thousands of people about his life and what it has taught him. His message is one of goal setting, positive change and personal value.  Josh is currently attending the College of William and Mary.
Personal Web Site: www.joshsundquist.com
 
MIKE (New York)
I am a HD of 32 years following a diagnosis of metastatic osteosarcoma at age 6. I was left with the head and neck of my femur, so technically I’m a high AK, but with no "functional" limb. I live and work at the foothills of the Adirondack Mountains, in the upstate New York region. I enjoy the out of doors, but spend much less time in it than I wish. I’ve been married to the love of my life for the past 17 years, and have 3 children ranging from 8 to 16. I have been working in the Prosthetic/Orthotic profession for the past 15-16 years and I’m in my prosthesis between 12 and 16 hours a day. I have been designing and building my own prosthesis for about 12 years, and have a special interest in Pedorthics (children). My socket is a rigid frame with a flexible liner. Currently, I utilize an Otto Bock hip with rubber band extension assists (7E4), torque absorber, Habberman 4-bar knee, 2nd torque absorber, Endolite multiaxial ankle and foot. I have a lot of experience with other components and am considering changing to some newer ones.
E-mail: Oneleggedman@juno.com


DAREN (Washington D.C.)
I’m 35, a congenital HD and right arm (at the elbow) amputee. I use a prosthesis full time and walk with no aids. I reside in a suburb of Washington D.C. I have a B.A. in Economics and an M.A. in Public Policy. During the day, I’m a regulatory economist for the U.S. General Accounting Office, but at night I’m a semi-professional stand up comic/writer. I perform at comedy clubs in the D.C. area. I’m also a writer on a contract basis for The Tonight Show, and several of the jokes I’ve written have been used by Jay Leno. Although this may sound impressive, the fact that I’m still here hints at how well the comedy career is going.

Prosthetics: "The Horror, The Horror". I’ve worn an exoskeletal leg since I was 18 months old. Since my first leg, my components have been simple: a plastic socket, constant friction knee, and SACH foot. This have served me well, until recently. My 11 year old prosthesis began to fall apart. Although my prosthetists are extremely knowledgeable, incorporating endoskeletal components into my new hybrid leg has resulted in 2 years of failure and nonsense. The "brave new world" of prosthetic knees, ankles, and feet, ironically have been a nightmare. For many of us, the new technology is a step backwards. My prosthetist now wants to return to an exoskeletal leg.

I ride an exercise bike (sans leg) for an hour, 3X a week. Also do a little weight training for upper body strength. I find the added stamina that exercise provides to be crucial in getting me through the day. I’m a member of the ACA, but find that one weekend a year in the amputee community is enough for me.
E-mail: Dswee372@aol.com


LYNNE (Pennsylvania)
Age 45, I live in the suburbs of Philadelphia. In 1991, I underwent an internal hemipelvectomy due to chondrosarcoma. I lost half my pelvis and was left with a "dead leg" which I dragged around. In 1992 the cancer re-occured in the remaining femur, and a complete amputation was done making me a full hemipelvectomy. I have a prosthesis which I mainly use for cosmetic reasons and use a wheelchair for mobility. I’m trying to loose some weight and maybe then I can wear a prosthesis again.

I never would have made it through all this without the support of my many lifelong friends and my husband (we’ve been married 24 years). No children, just a dog who is my "daughter". We had to give up the family business, but I’m back to working again and it makes me feel good to be out in the world again. It took me a long time to get on with my life, but I’m finally there (almost). Sometimes I have bad days, but most of the time, good days, and I thank God I am alive.
E-mail: LWP811@aol.com


KATI (Georgia)
(23 years old)
Hip disarticulation since age 8, due to Ewings Sarcoma.  I went through 18 months of chemo and surgery.  Now, I'm a recent college graduate working as a receptionist in a law firm.  I have BA in theatre where I am constantly striving to challenge audiences and directors by not wearing a prosthesis.  I have tried several through out the years but I'm very set in my ways.  I do a lot of public speaking about childhood cancer awareness and people with disabilities.

In September of this year I had my professional debut as an actress in Atlanta in a new play called Straightaway Dangerous in conjunction with Not Merely Players.  I received "rave reviews" and was named Best Stage Presence by Atlanta Magazine and a Critics Pick for best Actress of '03 by the Atlanta-Journal.  I'm a competitive singer and currently looking for MFA programs in acting. 
E-mail:
Contact through the Web Author

SANDRA (Florida)
(Hip-Disarticulation since 1982 due to a traumatic motor vehicle accident)
I live in in Orlando, with my husband, Sam. We travel both in and out of the country throughout the year. I have been a University Professor for the past 25 years and also had a private practice as a Clinical Psychologist. I now focus more on the rehabilitative area of psychology. I was using a prosthesis along with a cane until my early retirement a few years ago and went into a wheel chair for a while, but I got bored, so now I’m back in a leg and teaching again. My new leg has a double layer socket but it is much heavier than my original one, (previously I had a single layer laminated plastic socket) and I do like the artificial skin cover on my new leg. At the recent meeting of the the Academy of Orthotists and Prosthetists I presented two lectures "Psychological And Emotional Concerns of High Level Amputees" and "Hip-Disarticuation and Hemipelvectomy Amputees The Consumers Point of View."
E-mail: ssh@cfl.rr.com

JERELL (Florida)
I'm a Hip-disartic and have not met or spoke to anyone with this degree of amputation.  I had my surgery 2 years ago and have had very little help in getting back on two feet, so to speak.  I have a prosthesis now, but it's not very comfortable and very hard to work.  I need to find a good prosthetist, and to find someone to help me get back somewhat to a normal life.   Although I do get around good with my crutches it sure would be nice to get rid of them..  My wife thinks I'm asking for the moon and should be happy that I can do as much as I do, but I know y'all don't feel this way, at least I hope not.  Thanks for your support.
E-mail: jemeyers1@earthlink.net


USA - CENTRAL REGION
USA - ROCKY MOUNTAIN REGION
USA - WEST COAST REGION
EUROPE
CANADA & AUSTRALIA
BILATERAL AMPUTEES & INTERNAL HEMIPELVECTOMIES

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This site last updated on 10/6/2009