[TMIC] ot: thank you all
Wanted to thank everyone who kindly sent me messages of condolence. I'm still trying to accept my loss. Doesn't seem real still. I wake up every night around 4am with bad dreams. I had an aide staying 24/7 until last night, but can't afford it for now. Will still have an aide in afternoon and evenings. Glad you are all here. I pray those who are in hospital, and pray for you all for relief. With Love, Kevin
[TMIC] Face Book
Hi Everyone who is on face book. I guess I am a late learner. My daughter, who knows computers inside and out, just set me up on face book. I know I have received invitations from some of you to join as a friend, but in my ignorance I didn't know what to do at that point. She is coming today to show me how everything works. I didn't want any of you to think I wasn't interested or friendly. I was just ignorant about face book. Hope you all have a very Happy Easter! Patti - Wisconsin
Re: [TMIC] Walk Aide
Hey Kevin, I'm so sorry that the Walk Aide didn't work for you. I know that each person with TM is different, I too don't understand why you're able move your toes a little bit, that's all I'm able to do also, but it didn't work. Let me tell you a little about my visit. She, the Dr., didn't even bring in her computer into the room with her, because she didn't think she would be able to find a working muscle on a person with TM for eight years with a handheld electric unit. She did see that when I tried to move my toes, the muscles below my ankle was moving a little bit and that was a good sign. It showed that the muscle signal was getting to the brain. The muscle that's needed, need to be very close to the skin. My muscle that did work ( on my bad right leg ), she said is in a weird place, is on the right side back close to the knee. It's two fingers up from one of my moles. lol I would need the next cuff side, next HALF side would be perfect, because the unit needs to be in front of my leg, so it knows where my leg is. So, if when you try to move your toes and the muscles below the outside ankle are moving, that's a good sign. This isn't an exact science, but I believe that as our body heals itself, this unit could work for us. I don't think this unit would had worked a few earlier. I hope everyone tries the Walk Aide at least once, but if it doesn't work then maybe try again in a couple / few years. Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 4/2/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Friday, April 2, 2010, 3:51 PM While I was going to outpatient PT, I was notified by my therapist and neuro that someone from Walkaide was going to be at the hospital doing demonstrations on people with different disabilities (ie:stroke, spinal cord injury, neurological etc..) and they requested me to be the one that they tried it one with a neurological disability. I was the third person to be demonstrated on and the woman right before me had, had a stroke and she had great success with the walk aide. I was kind of excited but wasn't getting my hopes up... The guy wired me up with the device and started ramping up the electrical charge...nothing at a lower settingstill nothing at a little higher settingstill nothing higher yet... He turned the device all the way up and my left foot still did not respond... Oh well, at least it was a try. The guy was confused too because he said he had never seen anyone that didn't get at least some response from it. He even went on and hooked it up to a couple more people and it worked for them and then he came back to me and hooked it up again...same result, nothing.. My left leg is pretty much dead I guess... I mean, I can move my toes a very small bit, but that's it. I can't lift my foot at all... Maybe someday, they'll find something that will work on me. Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Fri, April 2, 2010 2:14:26 PM Subject: [TMIC] Walk Aide www.walkaide.com Two years ago, I got new feeling in my bad leg and one year ago, I was able to move my toes on my bad leg for the first time since April 1, 2002. So yesterday I went to a Walk Aide office here in Corpus Christi, TX and it did left up my drop foot on my bad leg, but I still will need the walker for balance. I'm just glad to know that I'm a candidate for this unit. To bad that Medicare doesn't cover the $4,800 unit. I know there is a 50/50 chance it will work for people with Transverse Myelitis, but I would still try and if it doesn't work, might try again, once you have gotten new feeling in your bad leg.
Re: [TMIC] SCI Hall of Fame Voting Deadline Extended
There were a TON of categories! Allen was under entertainment. Dear member of the TMA community: Allen Rucker has been nominated for the Spinal Cord Injury Hall of Fame in the entertainment category. As many of you know, Allen got TM and wrote a book about his experiences, ìThe Best Seat in the House.î Allen is a great supporter of the TMA! He was a keynote speaker at our symposium in Seattle in 2008 and is a regular columnist for the TMA Journal. Allen is also a regular contributor to Ability Magazine and New Mobility Magazine. It would be wonderful for our community, if Allen was awarded this honor! It would help to raise awareness about TM and the other rare neuroimmunologic disorders and it would also raise awareness about our Association and our community. When Allen speaks about his experiences, he always talks about TM and he always talks about the TMA and our community. Please get onto the Spinal Cord Injury web site and please vote for Allen. It would be a wonderful honor for Allen and it would be wonderful for all of us. The Spinal Cord Injury (SCI) Hall of Fame voting deadline is through April 15. Please visit http://www.spinalcord.org/index.phpwww.spinalcord.org for the full story and the http://www.spinalcord.org/members/vote.phpvoting link. You must be a member of NSCIA to vote, but membership is free you can sign up easily online! Thank you! --
Re: [TMIC] Walk Aide
Todd, Yeah, I've found after talking with so many people, that the variances in each of us with TM is pretty large as far as what works for one and what doesn't.. I'm coming up on two years pretty soon and if the opportunity ever arises again I'll definitely give the Walk Aide another shot. Who knows how I may respond after two years of walking and using that muscle group, however slight it may be. Quick story reverting back to my PT days...after the Walk Aide experiment, my neuro decided that it wouldn't hurt to add electro stim to my PT regimen so for 15 minutes prior to my PT exercises, my therapist would wire me up to the electro stim machine. This was on my left lower half of my leg since that is what I am having the primary issues with. The very first time she started turning the machine up and told me to let her know when it got uncomfortable...and she kept turning it up..and up..and up..and up.and she kept asking me, are you okay...? I would respond, yeah, I'm fine. I could feel the stim, but it didn't hurt and it wasn't making my muscles contract at all... Anyway, bottom lineshe ended up cranking up the machine all the way up and I still had no response from the machine. Now, I'm assuming the big electro stim machine has the capability to go higher and make a larger contraction than something like the Walk Aideand I was still getting nothing from it. Anyway, I did my electro stim anyway and just tried to make a conscious effort to make my muscles respond in conjunction the stim. Oh well Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Sun, April 4, 2010 3:42:48 PM Subject: Re: [TMIC] Walk Aide Hey Kevin, I'm so sorry that the Walk Aide didn't work for you. I know that each person with TM is different, I too don't understand why you're able move your toes a little bit, that's all I'm able to do also, but it didn't work. Let me tell you a little about my visit. She, the Dr., didn't even bring in her computer into the room with her, because she didn't think she would be able to find a working muscle on a person with TM for eight years with a handheld electric unit. She did see that when I tried to move my toes, the muscles below my ankle was moving a little bit and that was a good sign. It showed that the muscle signal was getting to the brain. The muscle that's needed, need to be very close to the skin. My muscle that did work ( on my bad right leg ), she said is in a weird place, is on the right side back close to the knee. It's two fingers up from one of my moles. lol I would need the next cuff side, next HALF side would be perfect, because the unit needs to be in front of my leg, so it knows where my leg is. So, if when you try to move your toes and the muscles below the outside ankle are moving, that's a good sign. This isn't an exact science, but I believe that as our body heals itself, this unit could work for us. I don't think this unit would had worked a few earlier. I hope everyone tries the Walk Aide at least once, but if it doesn't work then maybe try again in a couple / few years. Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 4/2/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Friday, April 2, 2010, 3:51 PM While I was going to outpatient PT, I was notified by my therapist and neuro that someone from Walkaide was going to be at the hospital doing demonstrations on people with different disabilities (ie:stroke, spinal cord injury, neurological etc..) and they requested me to be the one that they tried it one with a neurological disability. I was the third person to be demonstrated on and the woman right before me had, had a stroke and she had great success with the walk aide. I was kind of excited but wasn't getting my hopes up... The guy wired me up with the device and started ramping up the electrical charge...nothing at a lower settingstill nothing at a little higher settingstill nothing higher yet... He turned the device all the way up and my left foot still did not respond... Oh well, at least it was a try. The guy was confused too because he said he had never seen anyone that didn't get at least some response from it. He even went on and hooked it up to a couple more people and it worked for them and then he came back to me and hooked it up again...same result, nothing.. My left leg is pretty much dead I guess... I mean, I can move my toes a very small bit, but that's it. I can't lift my foot at all... Maybe someday, they'll find something that will work on me. Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent:
RE: [TMIC] Walk Aide
Good night everyone, I just out of the hospital for the 6th time in the almost 2 years of TM. I used the walk aide for some time when I was learning to walk again, but found it very difficult too, especially around tight corners. I'm using cruches now, but I still drag my right leg along. I have 20% of mobility in it, which for me is a God given gift considering all that has been taken away by TM. I find the crutches useful, but I still fell I should revert back to the chair because I have dizzy spells from time to time and there are only so many places on my arms and hips left to bruise when I fall/collapse. Does anyone have any advice as to how long I should keep trying the crutches? should I go back on the chair or should I just fo physio until I could walk on my own again. Jeron Date: Sun, 4 Apr 2010 15:41:22 -0700 From: hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: toddtm2...@sbcglobal.net; tmic-list@eskimo.com Todd, Yeah, I've found after talking with so many people, that the variances in each of us with TM is pretty large as far as what works for one and what doesn't.. I'm coming up on two years pretty soon and if the opportunity ever arises again I'll definitely give the Walk Aide another shot. Who knows how I may respond after two years of walking and using that muscle group, however slight it may be. Quick story reverting back to my PT days...after the Walk Aide experiment, my neuro decided that it wouldn't hurt to add electro stim to my PT regimen so for 15 minutes prior to my PT exercises, my therapist would wire me up to the electro stim machine. This was on my left lower half of my leg since that is what I am having the primary issues with. The very first time she started turning the machine up and told me to let her know when it got uncomfortable...and she kept turning it up..and up..and up..and up.and she kept asking me, are you okay...? I would respond, yeah, I'm fine. I could feel the stim, but it didn't hurt and it wasn't making my muscles contract at all... Anyway, bottom lineshe ended up cranking up the machine all the way up and I still had no response from the machine. Now, I'm assuming the big electro stim machine has the capability to go higher and make a larger contraction than something like the Walk Aideand I was still getting nothing from it. Anyway, I did my electro stim anyway and just tried to make a conscious effort to make my muscles respond in conjunction the stim. Oh well Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Sun, April 4, 2010 3:42:48 PM Subject: Re: [TMIC] Walk Aide Hey Kevin, I'm so sorry that the Walk Aide didn't work for you. I know that each person with TM is different, I too don't understand why you're able move your toes a little bit, that's all I'm able to do also, but it didn't work. Let me tell you a little about my visit. She, the Dr., didn't even bring in her computer into the room with her, because she didn't think she would be able to find a working muscle on a person with TM for eight years with a handheld electric unit. She did see that when I tried to move my toes, the muscles below my ankle was moving a little bit and that was a good sign. It showed that the muscle signal was getting to the brain. The muscle that's needed, need to be very close to the skin. My muscle that did work ( on my bad right leg ), she said is in a weird place, is on the right side back close to the knee. It's two fingers up from one of my moles. lol I would need the next cuff side, next HALF side would be perfect, because the unit needs to be in front of my leg, so it knows where my leg is. So, if when you try to move your toes and the muscles below the outside ankle are moving, that's a good sign. This isn't an exact science, but I believe that as our body heals itself, this unit could work for us. I don't think this unit would had worked a few earlier. I hope everyone tries the Walk Aide at least once, but if it doesn't work then maybe try again in a couple / few years. Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 4/2/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Friday, April 2, 2010, 3:51 PM While I was going to outpatient PT, I was notified by my therapist and neuro that someone from Walkaide was going to be at the hospital doing demonstrations on people with different disabilities (ie:stroke, spinal cord injury, neurological etc..) and they requested me to be the one that they tried it one with a neurological disability. I was the third person to be demonstrated on and the woman right before me had, had a stroke and she had great success with the walk aide. I was kind of excited but wasn't getting my hopes up... The
[TMIC] RE: tmic-digest Digest V2010 #144
Please unsubscribe _ From: tmic-digest-requ...@eskimo.com [mailto:tmic-digest-requ...@eskimo.com] Sent: Monday, 5 April 2010 9:56 AM To: tmic-dig...@eskimo.com Subject: tmic-digest Digest V2010 #144
Fw: [TMIC] RE: tmic-digest Digest V2010 #144
- Forwarded Message From: L and S Kekwick lkekw...@optusnet.com.au To: tmic-list@eskimo.com Sent: Sun, April 4, 2010 8:56:32 PM Subject: [TMIC] RE: tmic-digest Digest V2010 #144 Please unsubscribe From:tmic-digest-requ...@eskimo.com [mailto:tmic-digest-requ...@eskimo.com] Sent: Monday, 5 April 2010 9:56 AM To: tmic-dig...@eskimo.com Subject: tmic-digest Digest V2010 #144
Re: [TMIC] Walk Aide
Jeron, Can you get into physical therapy? You have probably done that before, but maybe at this point more can be done. Janice From: j ra Sent: Sunday, April 04, 2010 6:55 PM To: hwyfli...@yahoo.com ; toddtm2...@sbcglobal.net ; Transverse Myelytis Subject: RE: [TMIC] Walk Aide Good night everyone, I just out of the hospital for the 6th time in the almost 2 years of TM. I used the walk aide for some time when I was learning to walk again, but found it very difficult too, especially around tight corners. I'm using cruches now, but I still drag my right leg along. I have 20% of mobility in it, which for me is a God given gift considering all that has been taken away by TM. I find the crutches useful, but I still fell I should revert back to the chair because I have dizzy spells from time to time and there are only so many places on my arms and hips left to bruise when I fall/collapse. Does anyone have any advice as to how long I should keep trying the crutches? should I go back on the chair or should I just fo physio until I could walk on my own again. Jeron Date: Sun, 4 Apr 2010 15:41:22 -0700 From: hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: toddtm2...@sbcglobal.net; tmic-list@eskimo.com Todd, Yeah, I've found after talking with so many people, that the variances in each of us with TM is pretty large as far as what works for one and what doesn't.. I'm coming up on two years pretty soon and if the opportunity ever arises again I'll definitely give the Walk Aide another shot. Who knows how I may respond after two years of walking and using that muscle group, however slight it may be. Quick story reverting back to my PT days...after the Walk Aide experiment, my neuro decided that it wouldn't hurt to add electro stim to my PT regimen so for 15 minutes prior to my PT exercises, my therapist would wire me up to the electro stim machine. This was on my left lower half of my leg since that is what I am having the primary issues with. The very first time she started turning the machine up and told me to let her know when it got uncomfortable...and she kept turning it up..and up..and up..and up.and she kept asking me, are you okay...? I would respond, yeah, I'm fine. I could feel the stim, but it didn't hurt and it wasn't making my muscles contract at all... Anyway, bottom lineshe ended up cranking up the machine all the way up and I still had no response from the machine. Now, I'm assuming the big electro stim machine has the capability to go higher and make a larger contraction than something like the Walk Aideand I was still getting nothing from it. Anyway, I did my electro stim anyway and just tried to make a conscious effort to make my muscles respond in conjunction the stim. Oh well Kevin Weilacher N.E. Ohio (Canton) From: Todd Tarno toddtm2...@sbcglobal.net To: TMIC tmic-list@eskimo.com Sent: Sun, April 4, 2010 3:42:48 PM Subject: Re: [TMIC] Walk Aide Hey Kevin, I'm so sorry that the Walk Aide didn't work for you. I know that each person with TM is different, I too don't understand why you're able move your toes a little bit, that's all I'm able to do also, but it didn't work. Let me tell you a little about my visit. She, the Dr., didn't even bring in her computer into the room with her, because she didn't think she would be able to find a working muscle on a person with TM for eight years with a handheld electric unit. She did see that when I tried to move my toes, the muscles below my ankle was moving a little bit and that was a good sign. It showed that the muscle signal was getting to the brain. The muscle that's needed, need to be very close to the skin. My muscle that did work ( on my bad right leg ), she said is in a weird place, is on the right side back close to the knee. It's two fingers up from one of my moles. lol I would need the next cuff side, next HALF side would be perfect, because the unit needs to be in front of my leg, so it knows where my leg is. So, if when you try to move your toes and the muscles below the outside ankle are moving, that's a good sign. This isn't an exact science, but I believe that as our body heals itself, this unit could work for us. I don't think this unit would had worked a few earlier. I hope everyone tries the Walk Aide at least once, but if it doesn't work then maybe try again in a couple / few years. Todd in CC, TX TM @ T-4 to T-8 on April 1, 2002 --- On Fri, 4/2/10, kevin weilacher hwyfli...@yahoo.com wrote: From: kevin weilacher hwyfli...@yahoo.com Subject: Re: [TMIC] Walk Aide To: Todd Tarno toddtm2...@sbcglobal.net, TMIC tmic-list@eskimo.com Date: Friday, April 2, 2010, 3:51 PM While I
