Reeve Summit 2021: Where Care, Cure and Community Connect | Virtual Conference | April 27-29, 2021
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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.
Best Of
Looking to set up support/advocacy group
Hi All,
I'm putting this here because I don't see a category for this.
I'm trying to set up a support/advocacy group in the central Florida area, specifically between Leesburg and Ocala. I live in the Villages, FL, and I think I can find a meeting place somewhere in that area. So, I'm sending this out to reach out to folks who may live in the area who may be interested in this. Please respond if you are interested or think you know of someone who might be interested. Hopefully this approach will work.
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Re: A good trackball mouse for quads with tenodesis
I use Dragon 13 and a Kensington trackball. The trackball that I have has a wide, low profile. It works great for me. The trackball was kind of expensive it was $90.
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Re: Things To Do While Quarantined
Thanks for sharing all of those ideas! Downloading Masterclass right now (:

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Is this NORMAL?!...SCI life and adjusting.
Okay friends,
We are a fairly young couple, a couple years into SCI, and we are still trying to figure out the bowel/ bladder system. In short, how do you or when do you know or see the signs of having a sporadic movement?
Example:
We have been quite fortunate that my partner can feel quick onset discomfort in hit gut; tightness, irritation; or just something not right, we have been lucky enough to "nip it in the bud" and rather than having a bowel accident we have a system where he can release his bowels just in time of me preparing for what is about to happen. No shower, no accident necessary, thank goodness.
I am wondering:
Is it common for some of you to feel the need to release?
Do you have control over these feelings?
Is it quickly onset and comes out of nowhere?
And most of all, how do you manage a routine around sporadic surprises?
Thank you so much as we are still so new to this life,
Elena
We are a fairly young couple, a couple years into SCI, and we are still trying to figure out the bowel/ bladder system. In short, how do you or when do you know or see the signs of having a sporadic movement?
Example:
We have been quite fortunate that my partner can feel quick onset discomfort in hit gut; tightness, irritation; or just something not right, we have been lucky enough to "nip it in the bud" and rather than having a bowel accident we have a system where he can release his bowels just in time of me preparing for what is about to happen. No shower, no accident necessary, thank goodness.
I am wondering:
Is it common for some of you to feel the need to release?
Do you have control over these feelings?
Is it quickly onset and comes out of nowhere?
And most of all, how do you manage a routine around sporadic surprises?
Thank you so much as we are still so new to this life,
Elena

1 ·
Re: Going on a Cruise with an SCI
@Sterlion I went on a cruise about three years ago. It was an amazing experience! As a quad I’m always worried about accessibility but nearly the entire boat was accessible. The only thing that was a little tough was that the hallway is a bit tight but other than that it was a great experience

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Re: Queer Eye episode features man with SCI
@BrookeU I love the show queer eye they really do more than a make over! I saw that episode and Wes Hamilton has a great outlook on life and Big smile to match! Meeting the guy who shot him, Wow!
I thought he represented SCI in a very positive way.
Side note; didn't like the haircut they did though should of left longer hair, shorter beard. Hahaha but I'm no stylist haha
I thought he represented SCI in a very positive way.
Side note; didn't like the haircut they did though should of left longer hair, shorter beard. Hahaha but I'm no stylist haha
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Finding Rental Housing After Spinal Cord Injury
Hi friends!
Quick Question...
After you sustained an SCI, what sort of housing did you transition into? Were you able to stay in your current home or did you have to sell/ rent a new space?
I am curious about this because my partner and I did have to sell our townhome of 4 flights of stairs and now rent a ground floor condo. We really lucked out with this one as it was the ONLY rental we found in an area we really like but also it is an older building that was originally build for Veterans. Meaning, the door frames are all wider than usual and its more of an open concept home.
Things we had to think about when we were looking for a rental included doors frame width, height of all counters, bathroom space, was the place big enough to turn around in a chair, were there any lips or steps going to the patio from the door, could Dan fit under the bathroom sink (he still can't), could he reach the cupboards, etc etc.
These are things that we would have to explain to the owners of the building. One even asked me if I could carry him up 3 stairs- lol! Nope, cannot. He is in a chair
Please share some funny stories if you have any regarding rentals or housing, they are always welcome and maybe we can construct a post to educate the public around housing.
Thanks a bunch!
Elena
Quick Question...
After you sustained an SCI, what sort of housing did you transition into? Were you able to stay in your current home or did you have to sell/ rent a new space?
I am curious about this because my partner and I did have to sell our townhome of 4 flights of stairs and now rent a ground floor condo. We really lucked out with this one as it was the ONLY rental we found in an area we really like but also it is an older building that was originally build for Veterans. Meaning, the door frames are all wider than usual and its more of an open concept home.
Things we had to think about when we were looking for a rental included doors frame width, height of all counters, bathroom space, was the place big enough to turn around in a chair, were there any lips or steps going to the patio from the door, could Dan fit under the bathroom sink (he still can't), could he reach the cupboards, etc etc.
These are things that we would have to explain to the owners of the building. One even asked me if I could carry him up 3 stairs- lol! Nope, cannot. He is in a chair

Please share some funny stories if you have any regarding rentals or housing, they are always welcome and maybe we can construct a post to educate the public around housing.
Thanks a bunch!
Elena

2 ·
People with disabilities in the theatre
Hi, everyone! I spent this past weekend with one of my best friends who I hadn't seen in a while, and he happens to be in the musical theatre community. I was talking with him about how I feel like people with disabilities are still struggling to be cast in film and television. He mentioned to me that the theatre community is pretty ahead of the curve with this, casting people with disabilities not only in roles of characters who have disabilities, but even in roles of those who do not. This was really exciting to hear and not something that I realized, since I don't pay very close attention to theatre. Just thought I'd share!
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Best Accessible/Affordable Places to Live
Hey everyone, I am not sure if this topic has been talked about yet or not. But I am curious as to where all of you live and how you like it. My girlfriend and I live in Orange County, California. We both love it here, but it is outrageously expensive. I can't really see myself living outside of California but I most likely will not be able to afford living here in the future. I want to have a back up plan and have other options.
My question is what is an affordable state that has weather as close to California as possible. One of my biggest reasons for wanting to stay is my family, the accessibility and weather. The weather here is perfect for a spinal cord injury. I do not want to live anywhere that snows. I prefer the warm weather over cold. Trying to think about my future and where I will be able to afford to live. What states are warm, have good accessibility and are affordable?
My question is what is an affordable state that has weather as close to California as possible. One of my biggest reasons for wanting to stay is my family, the accessibility and weather. The weather here is perfect for a spinal cord injury. I do not want to live anywhere that snows. I prefer the warm weather over cold. Trying to think about my future and where I will be able to afford to live. What states are warm, have good accessibility and are affordable?

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