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-   Adaptive Cycling: Handcycles, Amputee Adaptation, Visual Impairment, and Other Needs (http://www.bikeforums.net/adaptive-cycling-handcycles-amputee-adaptation-visual-impairment-other-needs/)
-   -   Introduce yourself! (http://www.bikeforums.net/adaptive-cycling-handcycles-amputee-adaptation-visual-impairment-other-needs/768942-introduce-yourself.html)

Peter_C 09-19-11 12:31 PM

Quote:

Originally Posted by Neil_B (Post 13244625)
I'm frustrated I can't do things from time to time, but I don't think of myself as disabled/handicapped/whatever. How can I be? I do what I want to. I just sometimes do it a little differently than most folks.

That is my point. I spent 30+ years still doing what I wanted to do even with 13 dislocations, and seven knee surgeries. But now it's different, I can no longer do what I want to do. Plus, I think there is a difference between 'talking' about an issue, and being thought to be 'whining'.

/shrug

punkncat 09-19-11 02:20 PM

Cymbalta did not work for mine either. I have also tried Gabapentin to no avail. Honestly, nothing I have taken has completely taken the pains away. Time helps you learn to deal with it more.

Tom Stormcrowe 09-19-11 04:21 PM

Quote:

Originally Posted by punkncat (Post 13248719)
Cymbalta did not work for mine either. I have also tried Gabapentin to no avail. Honestly, nothing I have taken has completely taken the pains away. Time helps you learn to deal with it more.


Mirror Box Therapy, have you ever tried that?

[video=youtube;YL_6OMPywnQ]http://www.youtube.com/watch?v=YL_6OMPywnQ[/video]

John E 09-20-11 09:07 PM

Although my physical disabilities are limited to minor visual, coordination, and orthopedic impairments which do not interfere w/ daily living, as a humanitarian and as a technologist, I have long been interested in adaptive engineering, prosthetics, et al. I found the post about mirror treatment of phantom pain fascinating, having read about the benefits of music therapy for stroke victims. (Music stimulates the part of the brain directly opposite the speech center. There are folks who cannot talk, but who can sing; who cannot walk, but who can dance.)

I have encountered several AK and BK amputees, plus a few handcyclists, on the roads of San Diego County. Jim (CyclArt) Cunningham showed me a late 1940s advertisement which marketed the Sturmey-Archer 3-speed fixed gear hub to "the unfortunates," i.e., lower-limb amputees of WW II. As Sheldon Brown gradually succumbed to multiple sclerosis, the same disease which killed my mother at age 66, I read his posts about cruising around on a Tadpole trike, which enabled him to keep exercising as long as he could.

IBobi 09-21-11 04:26 PM

Hey all --

I wanted to stop by and say hi and, wow, am I impressed with how much great content there is here already! This could be one of the premier adaptive cycling sites on the Internet!

Let me know if you need anything from me to keep the momentum moving :)

LOVING IT.

Paul O'Brien
Community Manager
Bikeforums.net

Singlespeed92 09-21-11 09:25 PM

Hey guys,I'm Steve Sammons. I read the post that said "don't take your hat off,your ears will freeze" or similar,but my hat's off to all of ya's :thumb:. My biggest qualm has been people thinking that my being "disabled" means I was supposed to have been disfigured,but as many of us know that isn't always the case.

I suffer from trauma-caused scoliosis of the c-spine and lower lumbar regions,as well as 8 fused vertibrea,disintigrated (probably mispelled that) discs,degenerative disc disease,etc,which all began after having broken my neck while sleeping in a tractor trailer in 2001 whilest a co-driver wrecked me along I70 in Utah. I broke C's 2 and 4 among other damage,so I feel very blessed/fortunate to be as well off as I am. I've been accused of having a touch of ADD/ADHD too (not always in jest,though I personally don't find jesting about said subject funny either,FWIW)

Not knowing it was broken until it had "healed" means I didn't receive the treatment/adjustments/therapy that would have made a big differance in how I feel today. Neither C2 nor 4 are my current problems,C3 is,as it will randomly "slip out" the minutest amount,but enough to contact the chord and cause all kinds of false pain signals (for eg,had this talk several times...Doc "your hip doesn't really hurt,your brain thinks it does",Me "Pain is pain,Doc,it hurts",Doc "no you misunderstand,sir,your hip doesn't hurt...",me "the heck it doesn't...I can't walk for it!").

Most of my issues are pain,either stiffness,or the lack of range of motion,and when it "slips",it's dowright difficult to walk at all,even with a cane or similar,memory issues,irritability,and random (again,when there's pressure on the chord from "slippage") pain,spasms,numbness,loss of feeling,etc,etc. It was finally determined that I'm "not physically able to work consistantly enough at any kind of gainful employment to support myself/my family" this year,so I'm a glorified house-dad now.

I can go months and ride the wheels off my mtn bikes (for years,I lived WAY out n the sticks,town-wise,and utility riding/commuting/etc just wsn't feasible,though it's nearly always possible) several times per week,and road ride for mileage,but then there has been as long as 9 months at a time I could barely stand to walk,or do much of anything,for that matter. Now that I'm FINALY living in city and have all this city/utility riding available (not to mention that I no longer have to work,so I have the time),I'm currently going through one of those spells (LOL,ain't that irony?),where I'm unable to go out and do it.

I've never been shy/quiet about this condition,but I'm not foolish enough to believe that I'm not blessed or to think I have it worse than many out there who still love cycling too :)

Neil_B 09-21-11 10:36 PM

Quote:

Originally Posted by Singlespeed92 (Post 13260685)
Hey guys,I'm Steve Sammons. I read the post that said "don't take your hat off,your ears will freeze" or similar,but my hat's off to all of ya's :thumb:. My biggest qualm has been people thinking that my being "disabled" means I was supposed to have been disfigured,but as many of us know that isn't always the case.

I suffer from trauma-caused scoliosis of the c-spine and lower lumbar regions,as well as 8 fused vertibrea,disintigrated (probably mispelled that) discs,degenerative disc disease,etc,which all began after having broken my neck while sleeping in a tractor trailer in 2001 whilest a co-driver wrecked me along I70 in Utah. I broke C's 2 and 4 among other damage,so I feel very blessed/fortunate to be as well off as I am. I've been accused of having a touch of ADD/ADHD too (not always in jest,though I personally don't find jesting about said subject funny either,FWIW)

Not knowing it was broken until it had "healed" means I didn't receive the treatment/adjustments/therapy that would have made a big differance in how I feel today. Neither C2 nor 4 are my current problems,C3 is,as it will randomly "slip out" the minutest amount,but enough to contact the chord and cause all kinds of false pain signals (for eg,had this talk several times...Doc "your hip doesn't really hurt,your brain thinks it does",Me "Pain is pain,Doc,it hurts",Doc "no you misunderstand,sir,your hip doesn't hurt...",me "the heck it doesn't...I can't walk for it!").

Most of my issues are pain,either stiffness,or the lack of range of motion,and when it "slips",it's dowright difficult to walk at all,even with a cane or similar,memory issues,irritability,and random (again,when there's pressure on the chord from "slippage") pain,spasms,numbness,loss of feeling,etc,etc. It was finally determined that I'm "not physically able to work consistantly enough at any kind of gainful employment to support myself/my family" this year,so I'm a glorified house-dad now.

I can go months and ride the wheels off my mtn bikes (for years,I lived WAY out n the sticks,town-wise,and utility riding/commuting/etc just wsn't feasible,though it's nearly always possible) several times per week,and road ride for mileage,but then there has been as long as 9 months at a time I could barely stand to walk,or do much of anything,for that matter. Now that I'm FINALY living in city and have all this city/utility riding available (not to mention that I no longer have to work,so I have the time),I'm currently going through one of those spells (LOL,ain't that irony?),where I'm unable to go out and do it.

I've never been shy/quiet about this condition,but I'm not foolish enough to believe that I'm not blessed or to think I have it worse than many out there who still love cycling too :)

Hi Steve, fellow crooked rider here. You hit on a point that's bugged me for years. "My biggest qualm has been people thinking that my being "disabled" means I was supposed to have been disfigured,but as many of us know that isn't always the case."

I've hesitated to describe myself as disabled, for two reasons - fear that I would offend people who are more obviously 'disabled' by my using the label, and because I do so many things I don't think of myself that way, despite what some people tell me. Yeah, my legs are crooked, but they carry me on hikes and long bike tours. I'm restricted from lifting heavy objects at work and I have friends move stuff for me at home but I don't have a parking sticker or use the 'handicapped' spots. I took a discount at a campground a couple of years ago because the manager was almost forcing it on me, and I felt like I'd sold my pride for the two dollar discount. And at times people who see me make more out of my doing things than I do. (I've had BF posters tell me they are amazed "someone like me" can ride a bike, for instance.) I recognize I have to do things differently than many people, but I do them. Just like the posters here on this new subforum. The difference is that I think I should shout "I'm not worthy! I'm not worthy!" when I read about some of the stuff people here do.

My apologies if I've offended anyone, but this has been bothering me for a long time.

Peter_C 09-21-11 10:57 PM

That's my biggest problem. I am not disfigured in any way, save scars that can't be seen in street clothes. I have handicap plates on my car, and the looks I get at times makes me feel like some kind of cheat. I am fat - but everyone thinks that is simply due to being lazy, and lack of control, and, in my case to a degree that is true. But prior to riding again, exercise was not part of my daily life.

Yes, I still have both arms and legs, and for that I am blessed. But at times, even my lovely wife forgets about my 'pain', and thinks me lazy (what I see in her eyes)...

Singlespeed92 09-22-11 06:08 AM

Neil-I feel you,Brother,beLIEVE me. I also have a kind of,issue with the left hand,as several months after that accident in 2001 (again in Utah...what gives there? LMBO! :p) on the job,I sliced te left index finger in half (think of splitting a banana),so it was surgically reconstructed and from the knuckle down it's all synthetic (between some fancy kind of plastic to Ti screws/pins)...sometimes it feels "normal",sometimes can't feel it at all,sometimes it's hypersensitive. I don't notice that I do things diferently with that hand,but others do,LOL!

I do have the handicap placard to hang from my mirror,but don't always us it. Problem for me is,walking...tends toput me to where I can't after just a short distance. We used to go on/enjoy family walks in the eve,then it would get to the point that she would have to hurry home,come get me in the car.

I tend to get in a lazy spell after a long spell of issues (though I don't mean to,LOL),but yeah,I think all of us ("impairments" or not) should be thankful when we're able to do things,and take pride in what we do,because there isn't any garantee we'll be able to do it tomorrow,and regaurdless of how bad one thinks he has it,there's always someone down the street (even if only an internet "street") that has it worse. You keep going,Brother,and-this is something I'm still lerning to do-don't worry about what people say,they aren't inside you to feel and know what you do :thumb:

Peter-LOL,I feel you too,especially on the wife forgetting. She'll give me a forceful hug or something,and it sets off a few hours pain (sometimes pretty intense),and then she'll feel horrible (often saying something like "it's been TEN years,how can I not remember not to do that?" LOL!). I get lots of disapproving looks on the times that I DO park in a HP spot at the store,and even though there have been times I REALLY needed to,I won't use those motorized chair/cart thingies...just because of that,LOL! (note...sometimes...and you can't tell my wife,LOL...I do milk it a little :twitchy::rolleyes:)

Funny story: The day that HP placard came in the mail,I wanted to go out just to use it in all it's newness (sad,eh?:lol:),so I went to Walmart,and parked in the frst empty HP spot. There was this 18-20 year old kid in Daddy's Bimmer (HP tags on it,but he wasn't,his parent musta been) that must have thought I jumped in front and took "his spot" (I didn't see him from the angle of approach...it WASN'T his HP tag anyways),and as I walked past him,he squawked "You know...I WORK for my smurfing check!" ("smurfing" used in place of another word ;) ). I didn't bother telling him I'd worked since I was 15,or that I as a combat vet,what had happened to me to put me there (the accident/injuries) or anything,I thought about it and shouted back "Cool! You're working for mine too,Bubba,keep it up!" and gave him a :thumb: OH he was steaming! :roflmao2:

I can't imagine losing a limb,or being legally (or more severely) bind or deaf,and those who are have my utmost respect for their strength to do what they do. I understand though,until they experience it for themselves,most people just don't get it and will ignorantly assume the worst about those of us that "look fine"(now break down the word,assume makes a what out of "u & me"?:lol:).

jbgmom 09-22-11 08:09 AM

I have six year old twins with autism. They love riding in the car or a jogging stroller, but are overcome with a great desire to lie down whenever I try to get them to exercise with me!

Neil_B 09-23-11 10:55 AM

No photos so far in this thread. I'll start...

Hike up Mount Tom in PA's Pine Creek Gorge, August 2010. A small mountain, but my own. If I do nothing else in life I can say I've hiked up a mountain.

https://fbcdn-sphotos-a.akamaihd.net..._1022958_n.jpg

2nd 5K, with my friend and Bike Forums poster Sayre Kulp. December 2010. I took 50 minutes to complete the 'run.' Running was the worst thing I could do, and I did it.

https://fbcdn-sphotos-a.akamaihd.net..._5911800_n.jpg

After running up the steps of the Philadelphia Museum of Art, September 2009. This is at the midpoint of a 50 mile ride.

https://fbcdn-sphotos-a.akamaihd.net..._1757664_n.jpg

On tour, June 2008, Hancock Maryland, riding with Bike Forums poster Barndoor.

https://fbcdn-sphotos-a.akamaihd.net..._7257868_n.jpg

Peter_C 09-23-11 01:17 PM

My first bike ride with another person since 1980.

http://i1103.photobucket.com/albums/...-17-10_009.jpg

It was a 15-odd mile ride, in the low 40s, with sleet at one point.(my bike was the one on the left)

Chris516 09-24-11 12:47 AM

My name is Christopher. I have been a member of BF since 2004.

I have a domino kind of medical history. I have had a ventricular brain aneurysm(clipped) since birth(May'67). The brain aneurysm caused hydrocephalus(shunted) from the day I was born. The brain surgeries for both conditions caused epilepsy.

When I joined BF in 2004, I had just recently started riding again after six years. Prior to those six years, it had been sixteen years since I had ridden a bike.

I have a 2003 Specialized Allez' road racing bike. I ride despite the epilepsy, because when I am on my bike, I can control the electrical activity in my brain, through concentration. I have been in several collisions with vehicles but, the most was a broken wrist, a year ago. I do have balance issues when I am riding slow. So, I ride in traffic and 'take the lane'. I rarely ride on a bike path because, if I have a medical emergency and, I am not on a group ride, I will be stuck for letting EMS know where I am. I will not ride in a bike lane or, on the shoulder. I was hit while riding on the shoulder in 2007 and, I have heard too many times, of cyclists' being killed or injured riding on the shoulder, or in a bike lane. When I 'take the lane', I am usually going 20-30mph. Not just for the sake of the traffic, but also for exercise.

My family has tried to convince me to stop riding, but I have refused. Because I don't trust their driving skills, and public transportation takes so long. Airplanes n' trains notwithstanding, I can get a lot of places faster on my bike, than I can by public transportation or a car.

DnvrFox 10-03-11 04:22 PM

Hi!!

Let me introduce my son, Andy, 44 years old. (I am and 71, wife 73, and I am quite active in the 50+ forum).

Andy was born with a very profound developmental disability, and is non-verbal. He has had numerous diagnoses, including a type of CP, a seizure syndrome, and others. In 1998, He fell out of bed and sustained an L4-L5 fracture, sending him to a wheelchair. With a lot of physical therapy he became a "miracle" person and was able to walk again. We discovered he had severe osteoporosis, and started treatment with Forteo. However, 3 years ago he fell and sustained a femur fracture, which went undiagnosed for 6 months, despite our best attempts to get help. So, back to the wheelchair. He spent several weeks in the hospital (as did we, with him) when we finally were able to find a doc who would repair his femur. Along the way, we found that Forteo causes brittle bones, which was part of the reason he had the last fracture.

Whew!!

But, enough of that. The point of this thread is bicycling, and Andy loves to bicycle. We have been able to get him back on the bike after his last femur break. He rides a 3 wheel, 3 speed Worksman. For safety reasons, someone (me and/or his caregiver) must walk with him, but we go 1 - 3 miles on that weekly.

So, bicycling comes in all forms, and I am pleased and proud to introduce the group to Andy.

Here are a couple of pictures:

http://ourwebs.info/andybike.jpg

http://ourwebs.info/andyclup.jpg


Andy is one happy guy on a bicycle!! :)

jbgmom 10-10-11 08:35 AM

@DnvrFox
Andy is looks great on his bike, and you are a wonderful dad!
You are an inspiration to me... my sons will also need someone walking by them for safety reasons, but I hope to get them pedaling and steering someday soon. Looks like a nice bike path in the pictures.

I'm glad Andy's made it through his medical challenges and can still get out and ride. Sounds as if you are also staying in amazing shape.
Thanks for telling your story,
Alice

roboleg 10-10-11 09:01 AM

Quote:

Originally Posted by DnvrFox (Post 13313972)
Hi!!

Let me introduce my son, Andy, 44 years old. (I am and 71, wife 73, and I am quite active in the 50+ forum).

Andy was born with a very profound developmental disability, and is non-verbal. He has had numerous diagnoses, including a type of CP, a seizure syndrome, and others. In 1998, He fell out of bed and sustained an L4-L5 fracture, sending him to a wheelchair. With a lot of physical therapy he became a "miracle" person and was able to walk again. We discovered he had severe osteoporosis, and started treatment with Forteo. However, 3 years ago he fell and sustained a femur fracture, which went undiagnosed for 6 months, despite our best attempts to get help. So, back to the wheelchair. He spent several weeks in the hospital (as did we, with him) when we finally were able to find a doc who would repair his femur. Along the way, we found that Forteo causes brittle bones, which was part of the reason he had the last fracture.

Whew!!

But, enough of that. The point of this thread is bicycling, and Andy loves to bicycle. We have been able to get him back on the bike after his last femur break. He rides a 3 wheel, 3 speed Worksman. For safety reasons, someone (me and/or his caregiver) must walk with him, but we go 1 - 3 miles on that weekly.

So, bicycling comes in all forms, and I am pleased and proud to introduce the group to Andy.

Here are a couple of pictures:

http://ourwebs.info/andybike.jpg

http://ourwebs.info/andyclup.jpg


Andy is one happy guy on a bicycle!! :)

You go Andy!!!!!!!!!!!!!!!!:thumb:

DnvrFox 10-10-11 01:13 PM

Quote:

Originally Posted by jbgmom (Post 13343021)
@DnvrFox
Andy is looks great on his bike, and you are a wonderful dad!
You are an inspiration to me... my sons will also need someone walking by them for safety reasons, but I hope to get them pedaling and steering someday soon. Looks like a nice bike path in the pictures.

I'm glad Andy's made it through his medical challenges and can still get out and ride. Sounds as if you are also staying in amazing shape.
Thanks for telling your story,
Alice

Thanks.

Here are a couple of websites for organizations that I founded and run, and they may be of interest to you:

http://www.noewait.net

http://www.pad-co.info

Those two are very serious disability-related web sites.

Here is one that I run that is a lot more fun :) I started this a cappella singing group almost 6 uears ago. We have FUN!!

http://www.xyzingers.info

mauricelm 10-10-11 08:56 PM

What a great thread hello everyone My name is Maurice. I was in a motorcycle accident a year ago and broke many bones in the process. I have plates in my right arm and a rod in my right leg. My tibia hasn't healed its called a non-union but at I am able to ride my bike everyday and I couldn't think of anthing better!

javal 10-11-11 11:35 AM

Hello everyone and thanks to BF for opening this spot! Im not disabled myself, but in my profession I deal with all kinds of questions concerning functions and disabilities. Im really looking forward to be lurking this place!

Tom Stormcrowe 10-12-11 04:29 PM

Quote:

Originally Posted by javal (Post 13349000)
Hello everyone and thanks to BF for opening this spot! Im not disabled myself, but in my profession I deal with all kinds of questions concerning functions and disabilities. Im really looking forward to be lurking this place!

What exactly do you do? Just curious.....with a possible reason.

Walter 10-13-11 07:45 PM

I have posted about my condition before in various Road and Racing threads and started a thread here about setting up a roadbike for one handed riding but have not introduced myself.

Anyways my last motorcycle ride was on Oct 14th, 1993 and it ended very poorly. The resulting severe brachial plexus injury left me with a paralyzed left arm, pectorals and diaphragm. A lot of surgery including possibly one more and a lot of work has given me back some arm use but only, so far, the ability to twitch my fingers. Hence the need to convert the roadbikes as described in the other thread.

Large motor nerve damage causes lifetime pain, similar to amputee phantom pain. I deal with it but it is ever-present. I've had 4 surgeries which have transplanted nerves, muscles, tendons and fused my left wrist. Maybe one more still to go.

I ride reasonably well but only lately have started to overcome the diaphragm related breathing while under heavy exertion issues.

Chris516 10-14-11 11:03 AM

Quote:

Originally Posted by DnvrFox (Post 13313972)
Hi!!

Let me introduce my son, Andy, 44 years old. (I am and 71, wife 73, and I am quite active in the 50+ forum).

Andy was born with a very profound developmental disability, and is non-verbal. He has had numerous diagnoses, including a type of CP, a seizure syndrome, and others. In 1998, He fell out of bed and sustained an L4-L5 fracture, sending him to a wheelchair. With a lot of physical therapy he became a "miracle" person and was able to walk again. We discovered he had severe osteoporosis, and started treatment with Forteo. However, 3 years ago he fell and sustained a femur fracture, which went undiagnosed for 6 months, despite our best attempts to get help. So, back to the wheelchair. He spent several weeks in the hospital (as did we, with him) when we finally were able to find a doc who would repair his femur. Along the way, we found that Forteo causes brittle bones, which was part of the reason he had the last fracture.

Whew!!

But, enough of that. The point of this thread is bicycling, and Andy loves to bicycle. We have been able to get him back on the bike after his last femur break. He rides a 3 wheel, 3 speed Worksman. For safety reasons, someone (me and/or his caregiver) must walk with him, but we go 1 - 3 miles on that weekly.

So, bicycling comes in all forms, and I am pleased and proud to introduce the group to Andy.

Here are a couple of pictures:

http://ourwebs.info/andybike.jpg

http://ourwebs.info/andyclup.jpg


Andy is one happy guy on a bicycle!! :)

I had to do a bit of a double-take, when I first saw the second picture of Andy.:eek:(surprise) Because I thought that was a picture of me, taken at a time I had completely forgotten about. Your son is the same age as me.:thumb: He almost looks as if he could pass for a twin brother I don't have.:D

javal 10-14-11 11:42 AM

Quote:

Originally Posted by Tom Stormcrowe (Post 13356041)
What exactly do you do? Just curious.....with a possible reason.

Im the head of the councils assessments for disabled people. Mobility, traffic and infrastructure certainly involves my department. The possible reason?

Leo H. 11-19-11 07:26 PM

Rehab facility
 
My name is Leo and I work at a physical rehabilitation hospital in Reno, NV. I am always on the lookout for avenues[sic] to connect cycling with people, able or challenged. This looks like a great network I can share with therapists from work and to share with the head of the City of Reno's Disabled Sports Program.

They have handcycles of many different forms to rent, as well as other equipment.

I have had the good fortune to initiate contact with the Handcycle Championships held at the Tour de Nez bicycle race here in Reno and our therapists and patients in the past and now that yearly clinic/intro for riders and patients has been taken over by a staff member.

Welcome to everyone and thank you to Tom and whoever made the decision to add this forum head. It's a valued addition. :thumb:

Tom Stormcrowe 11-20-11 07:43 PM

Quote:

Originally Posted by Leo H. (Post 13512232)
My name is Leo and I work at a physical rehabilitation hospital in Reno, NV. I am always on the lookout for avenues[sic] to connect cycling with people, able or challenged. This looks like a great network I can share with therapists from work and to share with the head of the City of Reno's Disabled Sports Program.

They have handcycles of many different forms to rent, as well as other equipment.

I have had the good fortune to initiate contact with the Handcycle Championships held at the Tour de Nez bicycle race here in Reno and our therapists and patients in the past and now that yearly clinic/intro for riders and patients has been taken over by a staff member.

Welcome to everyone and thank you to Tom and whoever made the decision to add this forum head. It's a valued addition. :thumb:

You are very welcome. I was happy to set this up. My wife is visually impaired and has been recovering from a stroke last year. Yes, please do feel free to share this forum. I want to build it into a vibrant and active community of people enabling others to connect to a better quality of life through overcoming issues and limitations.


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