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  • iamdadmaniamdadman Posts: 175Moderator Moderator
    100 Likes 100 Comments 25 Awesomes First Answer
    @Felicia_jayne1
    Welcome to our group!  I am glad you are here.  When you said you decided to live instead of withering away it reminds me of one of my favorite expressions.  It's from the movie "The Shawshank Redemption".  There is a line in the movie that says, " you get busy living or get busy dying."  That is also the decision I made it to get busy living.  Your attitude will carry you over any obstacles you experience.  I wish you nothing but the best and hope to talk again...electronically.

    Joe
  • kentkent Posts: 3Member
    First Comment
    I'm Kent from Nebraska and have been a paraplegic all my life since a birth defect. I walk with crutches and lower leg braces and have an ostomy because of the paralysis. But my real issue these days is bowel management. My physician says I have all the symptoms of irritable bowel syndrome without actually having the constipation that often is associated with it. The challenge is dealing with the somewhat regular episodes of diarrhea that are particularly troublesome because my partial paralysis has me without full control of sphincter muscles. I've increased my fiber (Citrucil, bran flakes, fruits primarily), I exercise, drink a lot of fluid, take a probiotic, but I'm often on edge as to when cramps and diarrhea may strike. Any suggestions?
  • HuskerBK81HuskerBK81 Posts: 14Member
    10 Comments 5 Awesomes Photogenic Name Dropper
    Hi kent omaha here
  • MingentyMingenty Posts: 2Member
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  • soaringeaglesoaringeagle Posts: 10Member
    Photogenic First Comment
    hello, well, I was  injured 29 years ago, on the road from the house I grew up in, to the airport I now fly gliders out of with http://www.freedomwings.org/

    so I have the unique experience of soaring over both the area I grew up in, and the exact spot i was injured at. every flight would bring back memories of things from my childhood and early teens. however I never once looked  down and thought "theres where I was injured" 
    besides soaring, I also like to spend time in the wilderness.. just got back from a month long trip.
    The Reeves foundation has been very helpful to Freedoms Wings International over the years, so I am very happy to join this community.

    after 3 weeks in the wilderness I need a new offroad chair, anyone know ofany that can handle what I put them through? this 1 was just discontinued after i went through 5 of them
  • deborahvickdeborahvick Posts: 37Member
    10 Comments 5 Likes Name Dropper Photogenic
    Welcome Soaring eagle!  what type of off-road chair did you use? I'm in the process of trying to slowly raise money to purchase an all-terrain chair for the scouting community, so that I and others can access many more of the Outdoor
    programs independently
    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • BobbyRobiskyBobbyRobisky Posts: 1Member
    First Comment
    Hey guys,

    My name is Bobby Robisky and I am a quadriplegic C5 spinal cord injury.
    I got here October 15, 2016. I was black out drunk when I got hurt, the guys that I went out with said nothing about it and still do not to this day very suspicious. And I am doing much better off the ventilator and eating regular food. That is my story, I wanted to put out here.
  • soaringeaglesoaringeagle Posts: 10Member
    Photogenic First Comment
    Welcome Soaring eagle!  what type of off-road chair did you use? I'm in the process of trying to slowly raise money to purchase an all-terrain chair for the scouting community, so that I and others can access many more of the Outdoor
    programs independently


    i currently use an invacare a4. not perfect but has some suspension, quick change from indoor 0 degree camber to 15 degree outdoor knobby tires etc. but it was discontinued im looking at several options but none are coded for insurance, and none have all the options i wat/need so far
    btw would your scoutting troup want to come fly wit freedoms wings?
  • deborahvickdeborahvick Posts: 37Member
    10 Comments 5 Likes Name Dropper Photogenic
    I've been trying to raise money for the action track chair with the sale of jewelry and other hand stamped items but it's been very slow going though we did have a big event at the maker faire which was helpful but still only part of the way.

    I'm sure my scout to be very interested but where are you located? Live a great opportunity for them for both in terms of stem and also as part of their disability awareness badge. 
    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • GiffordGifford Posts: 2Member
    First Comment Photogenic

    I volunteer at Mercy hospital in Pittsburgh, where I am part of the Spinal Support Group, we get to talk with people who have recently been injured, who have no idea how their lives have changed just that they have. I also volunteer at the VA I am part of the Paralyzed Veterans of America group that goes into the VA and visit with our inpatient Veterans.  A benefit from the volunteer positions is we show people what they can do following an SCI. I have been told by Veterans at the VA who watch us come to the VA every week, get out of our cars rain, snow or shine and go room to room visiting the patients it inspires them to do more. We show them you can still have a purpose in life no giving up sitting in their house waiting for death.  I hand cycle locally and have done marathons and practice on the rails to trails. I am a peer mentor with Christopher Reeve's and have talked with a couple people. I shoot air rifle, air pistol, skeet and trap, recently I took up fly fishing. At my house I mostly fix things that break every day, saving money but it is a full time job! I enjoy cooking in the kitchen and on the grill. I tell people every day the more you do the more you will be able to do hopefully they listen.

    I am David Gifford and this is what I do.






  • soaringeaglesoaringeagle Posts: 10Member
    Photogenic First Comment
    I've been trying to raise money for the action track chair with the sale of jewelry and other hand stamped items but it's been very slow going though we did have a big event at the maker faire which was helpful but still only part of the way.

    I'm sure my scout to be very interested but where are you located? Live a great opportunity for them for both in terms of stem and also as part of their disability awareness badge. 


    pa/nj/ny, but with another sepeate chapter in fl, and 6 or 8 (well funded by the gov and lottery) in canada

  • GiffordGifford Posts: 2Member
    First Comment Photogenic
    Hey guys,

    My name is Bobby Robisky and I am a quadriplegic C5 spinal cord injury.
    I got here October 15, 2016. I was black out drunk when I got hurt, the guys that I went out with said nothing about it and still do not to this day very suspicious. And I am doing much better off the ventilator and eating regular food. That is my story, I wanted to put out here.

    I am glad you are making progress every step should be celebrated sometimes it takes a long time to achieve a goal, congratulations! Keep up the good work.

  • deborahvickdeborahvick Posts: 37Member
    10 Comments 5 Likes Name Dropper Photogenic
    hello, well, I was  injured 29 years ago, on the road from the house I grew up in, to the airport I now fly gliders out of with http://www.freedomwings.org/

    so I have the unique experience of soaring over both the area I grew up in, and the exact spot i was injured at. every flight would bring back memories of things from my childhood and early teens. however I never once looked  down and thought "theres where I was injured" 
    besides soaring, I also like to spend time in the wilderness.. just got back from a month long trip.
    The Reeves foundation has been very helpful to Freedoms Wings International over the years, so I am very happy to join this community.

    after 3 weeks in the wilderness I need a new offroad chair, anyone know ofany that can handle what I put them through? this 1 was just discontinued after i went through 5 of them
    sounds awesome and I'm sure that people back Eastwood live in I know I would but I'm actually in California though I do know of chapters for troops back east and I'm sure would be very interested
    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • soaringeaglesoaringeagle Posts: 10Member
    Photogenic First Comment
    edited July 23
    as for the offroad chairs. the crossfire all terain looks interesting, but has no shocks at all (theres another 1 with air suspension though) so would add loopwheels. (in wheel suspension) the other option box wheelchairs has a one made for a gy that does bmx in it, like 20 foot jumps. it has dual shocks
    all the options unlike the a4 would require 2 completely separate axles for indoor and offroad though.
    i met a guy at an bilities exopo with a prototype he built that was almost perfect. had dune buggy like suspension. the seat kinda just floated in it .. wish hed put it into production
    i've had bike designers offer to try to custom build me something.. but that went nowhere

    if you want strictly offroad (mine needs to do double duty offroad and everyday) theres 1 i think called freewheeler or something that has a dual push pull lever system, with grip options for quads
    there are electric options even with tracks
    but the way i offroads pure wilderness.. sometimes you got to cross over logs boulders rivers, (and sometimes need a lil extra "Sherpa" help) things no 500 pound power beast can get over or around
    im guessing the most extreme youd do would be 1 of the big well known trails, not miles into the national forests.. so maybe those would be an option.
    realized u couldnt see the chair too well in that 1
    oh umm also been growing my hair since a couple months after my injury too
    now its 10 feet long
    (beards to ankles)

    ok key to manual offroad (i'm technicaly a quad but was a para to start) wide camber.. side to side stability, nothings flat.. sometimes u may need to handle a 30 degree slant! a 15 degree camber will keep you from tiping
    some suspension really really helps .. this 1 has barely any but its enough.. well i dream of way more..
    i need it my backs (bleep)ed
    big fat knobby tires
    larger and wider casters
    light inthe front, you gotta op over every root and rock, but not too light that you flip over everytime u sit up straight on a slight uphill.. cause as i said, nothings flat.. or level. i had it too light this time
    oh and NO SEAT BELTS!!! you're gonna come out of the chair (know how to safely and semi gently) you don't want the chair coming over with you..
    I remember 1 time .. yea on a side slant.. not 30 degrees probaly less then 20 but wet weeds were slipery.. it started to drift towards well a cliff would rhyme haha but no just steep ridge i ended up laughing in the grass as my chair went tumbling down the mountainside without me ..
    i would have been pretty banged up, if not dead, if i was attached to the chair... i've come out of it hundreds of times in hundreds of ways and never been hurt
    at least 60 of those ways would have broken bones if the chair came with me.
    55 the bones broken would have been neck
  • Susan_1736632Susan_1736632 Posts: 1Member
    First Comment Photogenic
    My name is Susie.  I am a T12/L1 incomplete SCI for 22 years.  I live in a rural community north of Santa Barbara, CA. I have been involved with the Reeve Foundation since its inception.  I have attended 2 of the Reeve sponsored symposiums in the early years.  In the late '90's to early 2000's I was very involved in supporting our local rehab hospital where I was rehabilitated.  Through that association I was able to meet both Christopher & Dana individually at different events.I enjoy mentoring the newly injured and continue to try and be available for that. 
  • soaringeaglesoaringeagle Posts: 10Member
    Photogenic First Comment
    hello, well, I was  injured 29 years ago, on the road from the house I grew up in, to the airport I now fly gliders out of with http://www.freedomwings.org/

    so I have the unique experience of soaring over both the area I grew up in, and the exact spot i was injured at. every flight would bring back memories of things from my childhood and early teens. however I never once looked  down and thought "theres where I was injured" 
    besides soaring, I also like to spend time in the wilderness.. just got back from a month long trip.
    The Reeves foundation has been very helpful to Freedoms Wings International over the years, so I am very happy to join this community.

    after 3 weeks in the wilderness I need a new offroad chair, anyone know of anything that can handle what i put it through?
  • soaringeaglesoaringeagle Posts: 10Member
    Photogenic First Comment
    hello, well, I was  injured 29 years ago, on the road from the house I grew up in, to the airport I now fly gliders out of with http://www.freedomwings.org/

    so I have the unique experience of soaring over both the area I grew up in, and the exact spot i was injured at. every flight would bring back memories of things from my childhood and early teens. however I never once looked  down and thought "theres where I was injured" 
    besides soaring, I also like to spend time in the wilderness.. just got back from a month long trip.
    The Reeves foundation has been very helpful to Freedoms Wings International over the years, so I am very happy to join this community.

    after 3 weeks in the wilderness I need a new offroad chair, anyone know of anything that can handle what i put it through?
  • iamdadmaniamdadman Posts: 175Moderator Moderator
    100 Likes 100 Comments 25 Awesomes First Answer
    @Susan_1736632
    Hi Susie and welcome to our community.  I am glad that you are here.  It sounds like you are doing great things for those of us living with paralysis.  I find it helpful giving back to the community.  I work not only as a peer mentor but also a regional champion.  As regional champion I contact my federal legislators about laws or legislation that helps organizations like the Reeve Foundation.  I have been injured for almost nine years now and I am a T2-T3 incomplete.  
    Joe
  • iamdadmaniamdadman Posts: 175Moderator Moderator
    100 Likes 100 Comments 25 Awesomes First Answer
    @soaringeagle
    Fly high soaring eagle!  Nice to meet you.  I have seen chairs that are suited to outdoors but I don't know them specifically by name.  I would either google outdoor wheelchairs or go to New Mobility magazine and look at some of their ads.  They are always advertising stuff like that.  I am glad you are so active and adventurous.  It helps us all stay young.  I am glad you are here...

    Joe
  • glf52582glf52582 Posts: 2Member
    First Comment Photogenic
    Hello friends! My name is Garret Frey. I became paralyzed from a motorcycle accident in 1987 with my dad at the age of 4 years old. I'm a C4-C5, Asia A, and ventilator dependent. It's been 32+ years and I have to say that I feel great, fabulous, and amazing. I personally feel that I gain more strength everyday. I learned very early on that I had to use what I had left. I had my brain / mind and I still had my heart. I also had a voice. All the necessary and critical things we all need. I feel grateful and blessed for everything I have and also for my entire life. It may have taken myself awhile to discover my new world and life but it is truly because of each and everyone that has entered my life. I gain strength through everyone including everyone who has been in my life for better or whatever the case. It to me is truly ones mental abilities and to fight for another day. We all have feelings/emotions, thoughts, and opinions throughout each day of our lives and for myself that is natural and okay except we do not have to accept negative feelings/emotions, thoughts, and opinions overwhelm us, If you're upset, angry, afraid, or ashamed, my life has taught me a lot. Push through it, do it but do not lose control. Take a 5 minute time out, take a 5 hour time out and even more when there is a passing give yourself a 5 day time out. We ourselves do not deserve to feel upset or have those negatives. We should focus on more of what we can do. Skies the limit.

    I have gone through many different things but it's about overcoming the situation or obstacle. Once you start dreaming, you will have positive thoughts where nothing is impossible. Believe in ourselves first, gain confidence, and always be yourself and then in turn believe in others. Many good people are out there to help. And, do not ever stop asking for help. My mottos are to "never give up and to live your life to the fullest". Once you have accomplished pursuing your ultimate dream and you believe, you have to keep achieving your purpose in life. Sometimes it may take awhile to discover what you're going to do and yet you actually know the things you enjoy and can do. 

    I am a co-author of a book, "As I Am" which is an autobiography and an illustrator of "Benny and the Butterfly", which is another book for children and a book for everyone. In 2004, prior to Christoper Reeve's passing I actually had the opportunity to meet and talk to him. Christopher Reeve was a hero of mine and yet he was paralyzed for almost 10 years, I'm going 32+ years since my accident. I feel good, great, and wonderful and solely feel as though I can go another 32+ years. I have more hope than ever and I would like to see the same dream and goal as Christopher is to help others in any possible ways that I can. I may not ever see a cure for paralysis for myself but that isn't what I want. I would like to see my fellow friends and those who become paralyzed today to have that. More is to come I truly believe.

    My next chapters are to have my own website for additional information and to continue to publish a couple more books, and to begin my journey of becoming an inspirational speaker. I would like to become a moderator and to share more of my story to Christopher and Dana Reeve Foundation. If anyone has any questions, please feel free to contact me as I do my best to live each day to my fullest. I can do more. Positivity. Life is good. 
    Garret Frey
  • QuadMonster333QuadMonster333 Posts: 2Member
    Photogenic First Comment
    Hello! My name is Alexa, and, not that it defines who I am, I am also a C1 level quadriplegic on a ventilator. Just wanted to say hey to everyone, and if anyone wanted to talk, my email is [email protected] I just started my sixth year as a quad, and I'm still going strong! I hope to hear from you guys :-)
  • waianaesarawaianaesara Posts: 4Member
    Photogenic First Comment
    kent said:
    I'm Kent from Nebraska and have been a paraplegic all my life since a birth defect. I walk with crutches and lower leg braces and have an ostomy because of the paralysis. But my real issue these days is bowel management. My physician says I have all the symptoms of irritable bowel syndrome without actually having the constipation that often is associated with it. The challenge is dealing with the somewhat regular episodes of diarrhea that are particularly troublesome because my partial paralysis has me without full control of sphincter muscles. I've increased my fiber (Citrucil, bran flakes, fruits primarily), I exercise, drink a lot of fluid, take a probiotic, but I'm often on edge as to when cramps and diarrhea may strike. Any suggestions?

    hello, well, I was  injured 29 years ago, on the road from the house I grew up in, to the airport I now fly gliders out of with http://www.freedomwings.org/

    so I have the unique experience of soaring over both the area I grew up in, and the exact spot i was injured at. every flight would bring back memories of things from my childhood and early teens. however I never once looked  down and thought "theres where I was injured" 
    besides soaring, I also like to spend time in the wilderness.. just got back from a month long trip.
    The Reeves foundation has been very helpful to Freedoms Wings International over the years, so I am very happy to join this community.

    after 3 weeks in the wilderness I need a new offroad chair, anyone know ofany that can handle what I put them through? this 1 was just discontinued after i went through 5 of them
    Hi, Sara here. Sorry about your troubles. I'm looking for any kind of motorized wheelchair. I'm on Disability and pay rent which leaves me about $75 a month! In other words, I'm broke.  I don't know if Medicaid would help since I can sometimes
  • QuadMonster333QuadMonster333 Posts: 2Member
    Photogenic First Comment
    Hey there. The electric ones are pretty expensive… Have you had any luck with the manual wheelchair? Are you able to use a manual? I'm afraid I got mine through insurance :/ so I don't really have good advice in that regard. I'm sorry!
  • soaringeaglesoaringeagle Posts: 10Member
    Photogenic First Comment
    kent said:
    I'm Kent from Nebraska and have been a paraplegic all my life since a birth defect. I walk with crutches and lower leg braces and have an ostomy because of the paralysis. But my real issue these days is bowel management. My physician says I have all the symptoms of irritable bowel syndrome without actually having the constipation that often is associated with it. The challenge is dealing with the somewhat regular episodes of diarrhea that are particularly troublesome because my partial paralysis has me without full control of sphincter muscles. I've increased my fiber (Citrucil, bran flakes, fruits primarily), I exercise, drink a lot of fluid, take a probiotic, but I'm often on edge as to when cramps and diarrhea may strike. Any suggestions?

    hello, well, I was  injured 29 years ago, on the road from the house I grew up in, to the airport I now fly gliders out of with http://www.freedomwings.org/

    so I have the unique experience of soaring over both the area I grew up in, and the exact spot i was injured at. every flight would bring back memories of things from my childhood and early teens. however I never once looked  down and thought "theres where I was injured" 
    besides soaring, I also like to spend time in the wilderness.. just got back from a month long trip.
    The Reeves foundation has been very helpful to Freedoms Wings International over the years, so I am very happy to join this community.

    after 3 weeks in the wilderness I need a new offroad chair, anyone know ofany that can handle what I put them through? this 1 was just discontinued after i went through 5 of them
    Hi, Sara here. Sorry about your troubles. I'm looking for any kind of motorized wheelchair. I'm on Disability and pay rent which leaves me about $75 a month! In other words, I'm broke.  I don't know if Medicaid would help since I can sometimes
    theres 2 questions i hadnt seen kenyt maybe your taking too much
    sarah yes medicaide/medicare will help cover the chair
    you should get a prescription and a spec'ed out chair order through the local rehab.
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