RE: FW: [QUAD-L] About A.D. = Autonomic Dysflexia
Gabe’s average diastolic is in the 70s. So when he moves into 90-100, it’s a jump. He had to establish norms of highs and lows before he could set up a protocol. Before PRN meds were ordered by a doc. He only takes something if it won’t come down after about 15-30 minutes- Depending on how high and how fast it goes up. If Gabe’s goes up then comes down immediately he doesn’t take anything. Lana Gabe’s mom From: Eric Olson [mailto:[EMAIL PROTECTED] Sent: Sunday, October 23, 2005 5:38 PM To: Lana Baugh Cc: quad-list@eskimo.com Subject: Re: FW: [QUAD-L] About A.D. = Autonomic Dysflexia My diastolic is above 110 just about every time I go from chair to bed. It usually comes down without doing anything. I never take anything. Maybe I should look into taking something. Trouble is, when I'm in the chair, my pressure is really low. Eric Lana Baugh wrote: From: Lana Baugh [mailto:[EMAIL PROTECTED]] Sent: Sunday, October 23, 2005 2:56 PM To: 'Brien Stocker' Subject: RE: [QUAD-L] About A.D. = Autonomic Dysflexia Brien, Gabe carries procardia. It is a gel capsule. You snip or bite off the tip and squeeze it under your tongue and swallow the remaining pill. If the high BP doesn’t resolve in 15 minutes, repeat. One more repeat if it doesn’t resolve in 15 minutes. If it doesn’t resolve at that point call the rehab doc and 911. The protocol was worked up with a doc. AD is dangerous because if it doesn’t resolve quickly the BP can climb fast. We have a 45 minute window for the aides. They need to cath, check bowels, check for any other irritation- they usually find the problem in the first 10 minutes. If not they start the procardia. We start action when the diastolic is 90. if it reaches 110 despite all the treatment listed above that’s when 911 is called and the rehab doc. Our original plan idea came from the PVA SCI book. If your doc will not prescribe you should ask for a plan. If he can’t give you one with medication, get a new doc. I know I’m pushy. I hope I do not offend. It just pisses me off when I hear things like what you said. You deserve better. Lana Gabe’s mom 10 yrs post C 4-5 From: Brien Stocker [mailto:[EMAIL PROTECTED]] Sent: Sunday, October 23, 2005 12:35 PM To: Lana Baugh Subject: Re: [QUAD-L] About A.D. = Autonomic Dysflexia Lana Baugh wrote: From the info I’ve read on AD, it is the number 1 cause of death in individuals with a SCI. The number 1 cause of unresolved AD was kidney stones. Fortunately, most of Gabe’s specialists take it seriously. It’s the reg MDs and the nurses that don’t seem to have a clue. He carries an emergency sheet around in his back pack. I have attached a 4 page document on AD that his aides or docs can access in an emergency. I copied it out of the PVA book on SCI. The problem is when you really need them to understand or know about it - the most important times – they know zip. Gabe suffers, risks serious damage- possibly death and we look into a blank face. Now we try to go through the Rehab doc as much as possible. He says the other docs do not have a clue. They want us to call them when AD occurs regardless of the cause and they call the other doc. When Gabe is in the hospital and everyone pales when we try and discuss that the foley kink and high BP are related I want to pull my hair out. One nurse helped out a couple of years ago. She pulled up the info on AD, printed it out and put it on the front of Gabe’s chart. Everyone had to see it. Still I can’t always control what’s on the front of a chart. I think everyone should list their occupation as attorney. Maybe you’re just currently unemployed. My husband is an attorney and several docs somehow got the idea I was. I never said I was. I haven’t said I am. Who knows what could lurk in the mind of a women who is an attorney J and mighty pissed. Best wishes on dealing with AD. Lana Gabe’s mom 10 yrs post C 4-5 From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]] Sent: Friday, October 21, 2005 3:34 PM To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] About A.D. = Autonomic Dysflexia Error! Cannot read or display file.Error! Cannot read or display file. AD is a life-threatening problem. It can raise your blood pressure to where you can have severe strokes and heart damage. Jim There is a short term fast acting pill too reduce blood pressure. I asked my primary doc to give me some and he said NO. Does anybody carry that med with them when they are prone to AD. When I have AD, I am afraid I am going to have a stroke and would like to lower my BP. Any Ideas, folks? Brien
Re: FW: [QUAD-L] About A.D. = Autonomic Dysflexia
My diastolic is above 110 just about every time I go from chair to bed. It usually comes down without doing anything. I never take anything. Maybe I should look into taking something. Trouble is, when I'm in the chair, my pressure is really low. Eric Lana Baugh wrote: From: Lana Baugh [mailto:[EMAIL PROTECTED]] Sent: Sunday, October 23, 2005 2:56 PM To: 'Brien Stocker' Subject: RE: [QUAD-L] About A.D. = Autonomic Dysflexia Brien, Gabe carries procardia. It is a gel capsule. You snip or bite off the tip and squeeze it under your tongue and swallow the remaining pill. If the high BP doesn’t resolve in 15 minutes, repeat. One more repeat if it doesn’t resolve in 15 minutes. If it doesn’t resolve at that point call the rehab doc and 911. The protocol was worked up with a doc. AD is dangerous because if it doesn’t resolve quickly the BP can climb fast. We have a 45 minute window for the aides. They need to cath, check bowels, check for any other irritation- they usually find the problem in the first 10 minutes. If not they start the procardia. We start action when the diastolic is 90. if it reaches 110 despite all the treatment listed above that’s when 911 is called and the rehab doc. Our original plan idea came from the PVA SCI book. If your doc will not prescribe you should ask for a plan. If he can’t give you one with medication, get a new doc. I know I’m pushy. I hope I do not offend. It just pisses me off when I hear things like what you said. You deserve better. Lana Gabe’s mom 10 yrs post C 4-5 From: Brien Stocker [mailto:[EMAIL PROTECTED]] Sent: Sunday, October 23, 2005 12:35 PM To: Lana Baugh Subject: Re: [QUAD-L] About A.D. = Autonomic Dysflexia Lana Baugh wrote: From the info I’ve read on AD, it is the number 1 cause of death in individuals with a SCI. The number 1 cause of unresolved AD was kidney stones. Fortunately, most of Gabe’s specialists take it seriously. It’s the reg MDs and the nurses that don’t seem to have a clue. He carries an emergency sheet around in his back pack. I have attached a 4 page document on AD that his aides or docs can access in an emergency. I copied it out of the PVA book on SCI. The problem is when you really need them to understand or know about it - the most important times – they know zip. Gabe suffers, risks serious damage- possibly death and we look into a blank face. Now we try to go through the Rehab doc as much as possible. He says the other docs do not have a clue. They want us to call them when AD occurs regardless of the cause and they call the other doc. When Gabe is in the hospital and everyone pales when we try and discuss that the foley kink and high BP are related I want to pull my hair out. One nurse helped out a couple of years ago. She pulled up the info on AD, printed it out and put it on the front of Gabe’s chart. Everyone had to see it. Still I can’t always control what’s on the front of a chart. I think everyone should list their occupation as attorney. Maybe you’re just currently unemployed. My husband is an attorney and several docs somehow got the idea I was. I never said I was. I haven’t said I am. Who knows what could lurk in the mind of a women who is an attorney J and mighty pissed. Best wishes on dealing with AD. Lana Gabe’s mom 10 yrs post C 4-5 From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]] Sent: Friday, October 21, 2005 3:34 PM To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] About A.D. = Autonomic Dysflexia Error! Cannot read or display file.Error! Cannot read or display file. AD is a life-threatening problem. It can raise your blood pressure to where you can have severe strokes and heart damage. Jim There is a short term fast acting pill too reduce blood pressure. I asked my primary doc to give me some and he said NO. Does anybody carry that med with them when they are prone to AD. When I have AD, I am afraid I am going to have a stroke and would like to lower my BP. Any Ideas, folks? Brien
Re: [QUAD-L] Dave K - Part D
All you need to qualify is part a or b. Income has nothing to do with eligibility. If you don't sign up you're penalized 1% per month that you are not enrolled when you eventually do. The doughnut hole refers to the out of pocket costs for your medications. Basically you have a premium and deductible and some amount of co-insurance. I think some plans have higher premiums and no deductible. Your out of pocket costs determine the co-insurance. I think it's 25% between a-b 75% between b-c 100% between c-d (the doughnut hole where you pay full price for your medications ) and 5% over d (catastrophic coverage ) I know d is 3600. You'll have to check here for the other amounts. http://www.medicarerights.org/newlawframeset.html Eric Lori Michaelson wrote: Hi Dave, We're here too stewing over what to do. Recently got a letter from CMS semi-explaining what one must do. It just says "IF YOU QUALIFY" but, of course doesn't explain how you go abt finding alot of info out. And don't you have to pick a plan BEFORE Jan 1,2006? My PN Magazine said something abt a penalty for late appliers? In our situation, with that BIG mysterious doughnut hole on income ... we may be better off not paying into a plan when it MAY cost us more TO DO SO rather than continue to pay for my scripts outright. Did you get the list from Medicare.ORG? Lori Michaelson Age - 41 C4/5 complete quad, 26 years post Tucson, AZ ---Original Message--- From: David K. Kelmer Date: 10/20/05 19:08:56 To: Lori Michaelson Subject: Re: [QUAD-L] Greg - Medicare and God help us all! Hi Lori, Last week I contacted about 30 companies by phone that will be offering a Medicare Part D Plan in Texas and requested an information packet from them. Some said they'd mail the info out this week, some said they'd mail it out within two weeks, and some said a month or more. Either way I am going to be doing a lot a comparison shopping before I commit to ANY plan! With Love, CtrlAltDel aka Dave C4/5 Complete - 29 Years Post Texas, USA . Lori Michaelson <[EMAIL PROTECTED]> wrote: As you know I get weekly email Medicare info (especially on the new Part D prescription plan but alot more). But it has gotten so complex (for a govn't reason no doubt!) that even Dave (hubby being in a genius category) can not understand it all. We got the 2006 Medicare & You Handbook today. All the past ones have been exactly the same pretty much. This one says on the front that it is different. In Red. Understatement! Toward the back (I think) it says that there will be like $400+ in monthly premiums! With my SSD check being not much much more than that ... what the heck? Plus a debit taken out for the new Part D prescription program whether one is eligible or not! Thoroughly mind boggling! Greg ... I hope the plan you chose IS WORKING for you and that you're not just PAYING INTO it! And, Greg, hope you weren't offended by my last email to you on what to do. It's hard on me too. Well two days gone this week ... did you make any calls? You shoulda got your MEDICARE & YOU 2006 Handbook today too. Lori Michaelson Age - 41 C4/5 complete quad, 26 years post Tucson, AZ
Re: [QUAD-L] falling asleep
Lol. Well Bobbie im glad I just feel the ice. Silas - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; quad-list@eskimo.com Sent: Sunday, October 23, 2005 3:14 PM Subject: Re: [QUAD-L] falling asleep Yep I feel like I have Ice Water running through my arms constantly at times and then later I'm so hot I can't get my blanket off of me and I'm just miserable. This is what us women refer to as menopause. Now add sweating, sleeplessness, irritability and forgetfulness.
Re: [QUAD-L] New Therapy for Paraplegia and Quadriplegia
I got an e-mail from these people a couple years ago. Don't know if it works and don't have the money to find out. Houston809 wrote: New Therapy for Paraplegia and Quadriplegia Anybody familiar with this? Wally what have you heard? New Therapy for Paraplegia and Quadriplegia GIGER MD® Therapy is a unique therapy method Dear Sir or Madam The damaged or functionally impaired CNS (central nervous system) is functionally reorganised in its activated network parts or in its basic structure through the relearning of lost frequency and phase coordination in the performance of coordinated rhythmical movement. In the case of severe CNS damage, the restoration of physiological functions is only possible when instructed learning takes place in an integrative, co-ordinated and efficient way. The relearning of relative frequency and phase coordination and of old movement patterns of the diseased CNS can best be achieved with the use of GIGER MD® medical device which controls the frequency and phase coordination with a precision of milliseconds. This relearning of motor functions of the lesioned CNS is considered as a transformation of the coordination dynamics of the central nervous system. The increase in the relearning rate of specific spatial-temporal pattern of activity among the many billion neurons of the CNS networks through movement and other functions of the CNS is essentially determined by various factors. ge
Re: [QUAD-L] falling asleep
Yep I feel like I have Ice Water running through my arms constantly at times and then later I'm so hot I can't get my blanket off of me and I'm just miserable. This is what us women refer to as menopause. Now add sweating, sleeplessness, irritability and forgetfulness.
Re: [QUAD-L] falling asleep
Mark, I have the ice water in my arms but don't ever get hot. I'm either okay or varying degrees of cold. Usually very cold and miserable. Are your cold sensations affected by the weather? Eric wrote: Yep I feel like I have Ice Water running through my arms constantly at times and then later I'm so hot I can't get my blanket off of me and I'm just miserable. Mark ---Original Message--- From: Eric Olson Date: 10/19/05 16:36:47 To: Tim Syfert Cc: quad-list@eskimo.com Subject: Re: [QUAD-L] falling asleep I too sleep very poorly. My nasty-ass sensations of intense cold often keep me from sleeping at all. It has to be a neurogenic thing because I'll feel like I'm soaking in ice water regardless of my temperature. Anyone else have cold sensations? Anyway, even if I'm not having trouble with the cold sensations, I either can't fall asleep or can't stay asleep. I guess not being able to toss and turn easily makes sleep more difficult. Eric Tim Syfert wrote: Before my SCI I could fall right to sleep when I hit the sack, but post SCI it takes me 1-2 hour to finally fall asleep. Has anyone else experienced this? Tim Yahoo! Music Unlimited - Access over 1 million songs. Try it free.
Re: [QUAD-L] Speakerphone
I've had a USWEST 390 for about 10 yrs. now and it still works great. No problems at all. I'm unsure if they sell that model anymore, but if not, I'm sure they have others. Back then, I think I paid around $120.00 or so for it. Sometimes people can't tell if I'm using the speaker, so it must sound pretty good. Julie c4/5 On Sun, 23 Oct 2005 14:58:02 -0600 Fragile <[EMAIL PROTECTED]> writes: > Can somebody recommend a good, preferably inexpensive speakerphone? > Over the > years I've purchased dozens of them, have only been completely > satisfied > with one, an AT&T model 958. I use the AT&T in my living room, but > over the > past 16 months or so I spend most of my time bedridden because of > pain. I > bought another AT&T model 958 for my bedroom, but it was dead on > arrival. > I'm hesitant about buying another one. Most of the ones I've tried, > either I > can't hear the person on the other end, or they can't hear me. I've > been > looking at them all day and am considering a GE (Big-Button Memory > Telephone > with Call-Waiting Caller ID*, Speakerphone, Hearing Aid Compatible > and > 10-Number Memory 29369GE1). Has anybody had any experience with GE > speakerphones? BTW... I'm a C5, I hit the buttons with the knuckle > at the > top of my index finger or with my wrist.
FW: [QUAD-L] About A.D. = Autonomic Dysflexia
From: Lana Baugh [mailto:[EMAIL PROTECTED] Sent: Sunday, October 23, 2005 2:56 PM To: 'Brien Stocker' Subject: RE: [QUAD-L] About A.D. = Autonomic Dysflexia Brien, Gabe carries procardia. It is a gel capsule. You snip or bite off the tip and squeeze it under your tongue and swallow the remaining pill. If the high BP doesn’t resolve in 15 minutes, repeat. One more repeat if it doesn’t resolve in 15 minutes. If it doesn’t resolve at that point call the rehab doc and 911. The protocol was worked up with a doc. AD is dangerous because if it doesn’t resolve quickly the BP can climb fast. We have a 45 minute window for the aides. They need to cath, check bowels, check for any other irritation- they usually find the problem in the first 10 minutes. If not they start the procardia. We start action when the diastolic is 90. if it reaches 110 despite all the treatment listed above that’s when 911 is called and the rehab doc. Our original plan idea came from the PVA SCI book. If your doc will not prescribe you should ask for a plan. If he can’t give you one with medication, get a new doc. I know I’m pushy. I hope I do not offend. It just pisses me off when I hear things like what you said. You deserve better. Lana Gabe’s mom 10 yrs post C 4-5 From: Brien Stocker [mailto:[EMAIL PROTECTED] Sent: Sunday, October 23, 2005 12:35 PM To: Lana Baugh Subject: Re: [QUAD-L] About A.D. = Autonomic Dysflexia Lana Baugh wrote: From the info I’ve read on AD, it is the number 1 cause of death in individuals with a SCI. The number 1 cause of unresolved AD was kidney stones. Fortunately, most of Gabe’s specialists take it seriously. It’s the reg MDs and the nurses that don’t seem to have a clue. He carries an emergency sheet around in his back pack. I have attached a 4 page document on AD that his aides or docs can access in an emergency. I copied it out of the PVA book on SCI. The problem is when you really need them to understand or know about it - the most important times – they know zip. Gabe suffers, risks serious damage- possibly death and we look into a blank face. Now we try to go through the Rehab doc as much as possible. He says the other docs do not have a clue. They want us to call them when AD occurs regardless of the cause and they call the other doc. When Gabe is in the hospital and everyone pales when we try and discuss that the foley kink and high BP are related I want to pull my hair out. One nurse helped out a couple of years ago. She pulled up the info on AD, printed it out and put it on the front of Gabe’s chart. Everyone had to see it. Still I can’t always control what’s on the front of a chart. I think everyone should list their occupation as attorney. Maybe you’re just currently unemployed. My husband is an attorney and several docs somehow got the idea I was. I never said I was. I haven’t said I am. Who knows what could lurk in the mind of a women who is an attorney J and mighty pissed. Best wishes on dealing with AD. Lana Gabe’s mom 10 yrs post C 4-5 From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]] Sent: Friday, October 21, 2005 3:34 PM To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] About A.D. = Autonomic Dysflexia Error! Cannot read or display file.Error! Cannot read or display file. AD is a life-threatening problem. It can raise your blood pressure to where you can have severe strokes and heart damage. Jim There is a short term fast acting pill too reduce blood pressure. I asked my primary doc to give me some and he said NO. Does anybody carry that med with them when they are prone to AD. When I have AD, I am afraid I am going to have a stroke and would like to lower my BP. Any Ideas, folks? Brien
[QUAD-L] speakerphone
Can somebody recommend a good, preferably inexpensive speakerphone? Over the years I've purchased dozens of them, have only been completely satisfied with one, an AT&T model 958. I use the AT&T in my living room, but over the past 16 months or so I spend most of my time bedridden because of pain. I bought another AT&T model 958 for my bedroom, but it was dead on arrival. I'm hesitant about buying another one. Most of the ones I've tried, either I can't hear the person on the other end, or they can't hear me. I've been looking at them all day and am considering a GE (Big-Button Memory Telephone with Call-Waiting Caller ID*, Speakerphone, Hearing Aid Compatible and 10-Number Memory 29369GE1). Has anybody had any experience with GE speakerphones? BTW... I'm a C5, I hit the buttons with the knuckle at the top of my index finger or with my wrist.
Re: [QUAD-L] Tall people issues
[EMAIL PROTECTED] wrote: Hiya Britri! Just make 4 4 X 4 blocks made from 2 X 4's. When you get to the restaurant, just place them under the legs. Don't try it on tables with single pedestals, lol W Thanx, I will bring an old tire for round tables Bri
Re: [QUAD-L] falling asleep...no turns
I sleep on 1 of those a.p.p. Pads I don't turn at night. I've had 2 flap surgeries 1 in 98 1 in 99 I've been sleeping like this 4 over 5 yrs no problems yet know on wood :) On 10/22/05 11:57 PM, "Greg" <[EMAIL PROTECTED]> wrote: > I use a 4 inch thick foam mattress with an 18 inch square cut out where my > butt goes. In that opening I place a gell pad. I sleep all nigh without > turning, for 15 years or so. > > --- > If you don't get turned, what do you sleep on ? any special mattress ? > >
[QUAD-L] Fwd: All Hungry People Look The Same
--- Begin Message --- I agree with you Jim. I would never miss anything, as I don't care what people look at me when I'm being fed. They are just curious and I understand. I've caught myself doing the same thing to persons that are different from me. It's only normal. I often have to get suctioned in front of people, I'm not going to stay home if I'm not contagious. I still want to go out and do things. Dana (C-4-5, 31 years post, 52 KC) Jim, you've got the right idea. I'm sure that the stares are from people who must think that Chris Reeve, is still alive, and moved to Minnesota (lol).You have also gathered that people react to your actions, and reactions. If you are totally involved in your group, you will get less reaction. On the other hand, if youare floundering, people will react and stare. But we both know that hungry people all look alike lolBest WishesWIn a message dated 10/21/05 4:22:35 PM, [EMAIL PROTECTED] writes:<< Personally I don't care what I look like or how much room might take up in a restaurant when I go out to eat. I tell the hostess that they need to place me somewhere where I'm not going to be in their way. I tell them that I cannot fit underneath a table and I am not going to be moving out of their way continuously if they put me in the middle of an aisle. I have always been placed in a very nice spot of the restaurant and I have been out of their way so they can do their job. I have never missed a gathering of family or friends because I was too afraid to be singled out. I know I'm different because I am in a wheelchair and people are going to stare even if I did fit under the table. >> --- End Message ---
