Comments for UsersFirst http://www.usersfirst.org Empowering Wheelchair Users Thu, 02 Feb 2012 00:22:25 +0000 hourly 1 http://wordpress.org/?v=3.1.3 Comment on In The Home Isn’t Everything by Travis http://www.usersfirst.org/wheelchairs-in-the-home/#comment-124 Travis Thu, 02 Feb 2012 00:22:25 +0000 http://www.usersfirst.org/?p=415#comment-124 I could not agree more. I recently posted on this same issue. I do not have Medicare and my insurance will not cover ANY adaptive equipment including much needed new wheelchair. I contacted my insurance and they thought I was crazy saying "We only can offer you a rental wheelchair" and I replied "well what if you live in one?" My doctor was on board with a prescription for a light, heavy duty chair for my high level ability and drive. The story is similar regarding handcycles etc. I had to search Ebay and Craiglist for two years to finally buy a used handcycle for $1200. I do not collect disability or Mediicare but by having job and support my family I have no options to help with "outside" activities.Thanks for your valid points. I could not agree more. I recently posted on this same issue. I do not have Medicare and my insurance will not cover ANY adaptive equipment including much needed new wheelchair. I contacted my insurance and they thought I was crazy saying “We only can offer you a rental wheelchair” and I replied “well what if you live in one?” My doctor was on board with a prescription for a light, heavy duty chair for my high level ability and drive. The story is similar regarding handcycles etc.

I had to search Ebay and Craiglist for two years to finally buy a used handcycle for $1200. I do not collect disability or Mediicare but by having job and support my family I have no options to help with “outside” activities.Thanks for your valid points.

]]> Comment on Power When You Don’t Need It by tom odonnell http://www.usersfirst.org/power-when-you-dont-need-it/#comment-65 tom odonnell Thu, 15 Dec 2011 19:06:38 +0000 http://www.usersfirst.org/?p=458#comment-65 Would appreciate info on your new chair Would appreciate info on your new chair

]]> Comment on Power When You Don’t Need It by Ben J http://www.usersfirst.org/power-when-you-dont-need-it/#comment-54 Ben J Thu, 10 Nov 2011 18:56:18 +0000 http://www.usersfirst.org/?p=458#comment-54 Larry, that is an incredible story. I am starting a company that aims to bring smart adaptive technology to users that have problems getting the equipment they need through insurance. Our first product is a lever chair that can be purchased for under $1000. Please get in touch, my email is benj_19 at mit dot edu. Best, Ben J Larry, that is an incredible story. I am starting a company that aims to bring smart adaptive technology to users that have problems getting the equipment they need through insurance. Our first product is a lever chair that can be purchased for under $1000. Please get in touch, my email is benj_19 at mit dot edu. Best, Ben J

]]> Comment on Staying Connected and Acting Together by Michele A. Leahy http://www.usersfirst.org/staying-connected-and-acting-together/#comment-32 Michele A. Leahy Mon, 03 Oct 2011 17:39:10 +0000 http://www.usersfirst.org/?p=468#comment-32 Getting a new wheelchair is very scary and exciting at the same time. On one hand you get excited by the newness of a chair. It's like the smell of a new chair and no scratches. everything is brand new. Yet when the new chair doesn't fit it's so difficult to not get frustrated and feeling that there is no recourse on an exchange. One starts to think, "if only the PT listened to me", "if only I spoke up a bit more", "if only the insurance paid for a chair that really gave me the independence I deserved". It's so great to have a forum like UsersFirst where our voices can be heard. Getting a new wheelchair is very scary and exciting at the same time. On one hand you get excited by the newness of a chair. It’s like the smell of a new chair and no scratches. everything is brand new. Yet when the new chair doesn’t fit it’s so difficult to not get frustrated and feeling that there is no recourse on an exchange. One starts to think, “if only the PT listened to me”, “if only I spoke up a bit more”, “if only the insurance paid for a chair that really gave me the independence I deserved”. It’s so great to have a forum like UsersFirst where our voices can be heard.

]]> Comment on Staying Connected and Acting Together by Brian Reilly ATP http://www.usersfirst.org/staying-connected-and-acting-together/#comment-29 Brian Reilly ATP Tue, 27 Sep 2011 14:09:02 +0000 http://www.usersfirst.org/?p=468#comment-29 Thanks Ann! I really appreciate all the people who work hard to improve mobility in all its forms. The vast resources and huge pool of creative, talented professionals is truly inspiring, and more importantly, hugely encouraging to all of us who work and live with such challenges. I look forward to maximizing my connections with all the resources we have these days like UsersFirst. We can do this, and do it well, thanks to team members like UsersFirst. Thanks Ann! I really appreciate all the people who work hard to improve mobility in all its forms.
The vast resources and huge pool of creative, talented professionals is truly inspiring, and more importantly, hugely encouraging to all of us who work and live with such challenges. I look forward to maximizing my connections with all the resources we have these days like UsersFirst. We can do this, and do it well, thanks to team members like UsersFirst.

]]> Comment on Liam Feeling Great by Pollye Hunter,PT http://www.usersfirst.org/liam-feeling-great/#comment-6 Pollye Hunter,PT Tue, 09 Aug 2011 04:35:24 +0000 http://www.usersfirst.org/?p=262#comment-6 What a great story, Liam! I am so glad that you were able to get your power chair so that you can play tag with your friends. I am a PT for a school district, and we have many kids in our district just like you. I think it is awesome that power wheelchairs give kids the freedom they need to be able to play and have fun. Thank you for sharing your story! What a great story, Liam! I am so glad that you were able to get your power chair so that you can play tag with your friends. I am a PT for a school district, and we have many kids in our district just like you. I think it is awesome that power wheelchairs give kids the freedom they need to be able to play and have fun. Thank you for sharing your story!

]]> Comment on Not Knowing Can Hurt by Ziggi http://www.usersfirst.org/know-your-wheelchair-choices/#comment-5 Ziggi Mon, 08 Aug 2011 18:26:21 +0000 http://www.usersfirst.org/?p=425#comment-5 Being a rookie in the SCI game can be really tough. Rehab time is way down and often covers nothing more than the absolute basics. There certainly isn't enough time to develop a network of friends and peers you can lean on for advice. Most of the new SCI that I have known have to some extent started off on the wrong foot- Wrong wheelchair, wrong driving controls, wrong home equipment. It's unfortunate since as Mercedes points out, most funding is one shot and then you sit out for a number of years before you can get back in the game. A lot of damage can be done in those years. Being a rookie in the SCI game can be really tough. Rehab time is way down and often covers nothing more than the absolute basics. There certainly isn’t enough time to develop a network of friends and peers you can lean on for advice.

Most of the new SCI that I have known have to some extent started off on the wrong foot- Wrong wheelchair, wrong driving controls, wrong home equipment. It’s unfortunate since as Mercedes points out, most funding is one shot and then you sit out for a number of years before you can get back in the game. A lot of damage can be done in those years.

]]> Comment on Not Knowing Can Hurt by Kathleen Kelly http://www.usersfirst.org/know-your-wheelchair-choices/#comment-4 Kathleen Kelly Mon, 08 Aug 2011 17:58:29 +0000 http://www.usersfirst.org/?p=425#comment-4 Mercedes-you are so right. There is so much information out there and there must be a better way to get information and access to resources to users! This is such a great forum to speak your mind and truth---as a Physical Therapist working with newly injured persons with SCI I try my best--but think the health care networking commuinity has a long way to go! I will continue to try harder and harder because it is just toooo important to let anyone slip through the cracks! Thanks. Mercedes-you are so right. There is so much information out there and there must be a better way to get information and access to resources to users! This is such a great forum to speak your mind and truth—as a Physical Therapist working with newly injured persons with SCI I try my best–but think the health care networking commuinity has a long way to go! I will continue to try harder and harder because it is just toooo important to let anyone slip through the cracks! Thanks.

]]> Comment on Taking Control by admin http://www.usersfirst.org/taking-control/#comment-2 admin Sat, 30 Jul 2011 17:05:12 +0000 http://www.usersfirst.org/?p=375#comment-2 On spot about taking control. Being passive may at times work against you. Not that you need be a dictator but obtaining a wheelchair is a complex process involving many players who may or may not always communicate with each other. Playing traffic cop or taking matters into your own hands if things are really getting crazy is not at all a bad thing to do. On spot about taking control. Being passive may at times work against you. Not that you need be a dictator but obtaining a wheelchair is a complex process involving many players who may or may not always communicate with each other. Playing traffic cop or taking matters into your own hands if things are really getting crazy is not at all a bad thing to do.

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