Reeve en Español
Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.
Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.
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Comments
Hey Dan and welcome to our group. I dig the whole hot wheels thing. That is what my granddaughter calls me. She always freaks out if she thinks I am going too fast or when I am going down hills. I have been injured just about 8.5 years and I am a T2. I am glad you are here and hope you enjoy our conversations...
Joe
Howdy Jim, it's nice to meet you. I have a sister who lives in Venice, Florida. Also, when you arrive in Seattle, let me know. I live very close and we could have a cup of coffee or something. I will bring the wife and we can make it a double date...
Joe
Nurse Linda, thank you very much for your insights. I have been an athlete all my life. I rode my 18 speed, played golf, baseball, football, ping pong, basketball, tennis and jogged as well. I lost the sight in my left eye so my depth perception is non-existent which makes playing any sport difficult. I have been surfing, kayaking and did hit some golf balls. Hitting the gold balls was so exhausting. It was more difficult than some of my workouts. That is a lot of stuff to look at and I will check out the YouTube stuff...
Joe
This one is for you! This is not the Tetraski. That was being used in the morning. I used it in the afternoon and had the opportunity to have several of use use my gopro to get different perspectives. I used the diamonique bi-ski with fixed outriggers and had some fun "rippin" it down the mountain and even got some air. That being said it took some time for my breathing to get back to normal even when in increased my oxygen.
https//m.facebook.com/story.php?story_fbid=832440607089868&id=100009718085807&_rdr
It was so hard to look for funding so I just bought some decent camera equipement and headed out. I figured I was much more likely to get funding with a couple of projects in my pocket. I've got a broadcast journalism degree, so I'm not just winging it, the product is good... but I ain't getting rich doing it!
It sounds like your personal story is as interesting as any that you are filming. May I ask, what is a disability community?
Thanks
Your experiences sound totally awesome! Nowadays for me and my case I'm pretty much tied down to where I can get infusions every few weeks. . . But totally happy to the vicariously through you.
the awesome ski that I got to use or sit ski that I got to use at Tahoe was actually from the University of Utah universities are really coming out with some great things hopefully they can come out something soon for accessibility at outdoor camping sites for scouting communities
.I can't wait to go to go off-roading easily without causing injury to my body.
Welcome to our community. Yeah, I know it sucks to have to belong to a community like this as opposed to a community of dashingly good looking, funny, smart, wealthy celebrities but it is what it is. So, if I read your story correctly, you still don't know what caused the problem? The neurologist or any of the other doctors had a diagnosis? Man, that kind of sucks! When did this happen? I will tell you from my own personal experiences that when you have a traumatic injury, you quickly realize the limitations of the medical profession. Keep coming back. I think if you share your story and read others, you will see that life goes on whether you enjoy the ride or not. Hang in there...
Hi Tom,
It's great to have you here. I am just up the road a piece in Mill Creek WA. It's about 20 miles north of Seattle. I think what you are doing is phenomenal! My son just moved to Hillsboro is I spelled it correctly. I could relate to your comment about enclaves where poorer countries house their disabled population. The camaraderie is so important to me personally. About a year and a half after I was injured, I went to Project Walk in Carlsbad CA. It was the first time I was around a bunch of other people in wheelchairs. It felt so good to be with others who were living the life I was. As much as my family and friends love me and support me, no one else understands what it is like to be in a wheelchair like another person in a chair. It really helped me improve my attitude. I would love to be kept up to date on your adventures. I respect and commend what you do...
Joe
love the response!!! @tooalone so sorry To hear of your challenges. Though not paralyzed, I am very familiar of the pains from nerve damage. I have numerous fusions because of spinal cord fluid that was blocked by vertebrae and many more occasions Have awoken with slipped disks and vertebrae out of stuck out of alignment causing severe muscular and nerve pain.
Im am truly sorry to hear of the challenges. Know you are not alone and that though many of us have different challenges the one thing that unites us is our desire to lead the best life possible and push on forward. (Really no pun was intended but I’ll keep it in 😀)
It's great that all of us are on this site and supporting one another. The reality of life is that there are going to be days that kick us in our butts. But, (no pun intended Deborah) with a little help from our friends and a positive outlook, the many amazing things in our lives keep us motivated and loving life. That may not be true for all of us but for me living a life of regret, depression, anger, resentment and sadness is just too damn hard. It's simply not worth it to me. I choose to look the blessings in my life. I was able to stop measuring my life based on what I had lost but instead choose to measure my life based on what I still have. It makes my life a heck of a lot more fun... keep punning Deborah... I like it!
Joe
I can totally relate. I completely lost the sight in my left eye and no one even knew it until I realized it. Then "the specialist" comes in at 5:00 AM in the morning, wakes me up, sticks a light in my eye and says, "yes, you have lost the sight. It may come back but it is doubtful." Real kind bedside manner...not! It doesn't matter how much function a person may have because we all feel our own personal level of disability as a very personal matter. Regardless of how functional you are we all hurt the same. I have 24/7 nerve pain that is a 6 or 7 on the pain scale. There is nothing that has helped. I have tried different medications and given them all up and I have tried different CBD's and pot and nothing touches it. So, I try to ignore it. It is concentrated in my butt but goes down both legs to my calves. I wish you the best and hope you know that you are no longer alone...
Joe
I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.
Leave a comment any time below. Let's get the discussion going!
Nurse Linda
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Too alone, I lost my eyesight because the surgery was long (5-6 hours) and I lost my blood pressure. They said because of that, my optic nerve in my left eye didn't get enough blood supply. I am so sorry to hear that you have no support around to help you cope. Having a condition is bad enough without having to deal with it by yourself. How old are you if I may ask? I am going to be 68 on May 1. I wish I could do more to help support you. Where do you live? Are there any support groups around in the area? You can drop me a message any time. I want to be a friend... one that you can count on to listen... take care...
just Windows right though that with rare disease is it is a lot more challenging. But that said with a lot of my conditions there was definitely signs that something was the wrong ie... a person doesn't have full range of motion after reconstructive knee surgery. Though I will say the medical community has come a long ways. It has a great deal to do still but it's moving in the right direction. moreover the more organizations and groups that begin to unite people with disabilities the more we begin to communicate together and begin to give feedback to research and doctors which can really help us down the line. For example, just a few years back dysautonomia was considered a disorder coing existing or comorbid with ehlers-danlos now it's beginning to believe that ehlers-danlos actually causes dysautonomia.
Don't give up but definitely try to empower yourself with knowledge and try and get multiple opinions. I went to quite a few specialist before being referred to Johns Hopkins and that was after the Mayo clinic misdiagnosed me. Now of course it's very clear to my doctor's my disorders.