Re: [TMIC]An Article From www.aarp.org re M. Graves
Thank you Hildred. What a great man - he has accomplished much in his life. He is definitely an inspiration to all of us. Linda -- Original message -- From: [EMAIL PROTECTED] > Hildred thought you might be interested in this page on AARP's Web site: > > --- Message from Hildred > > Do yall remember this guy from a few years ago? He got TM while in Germany and > was sent to the same rehab facility Chris Reeves had been in. I wondered what > had happened to him! > > - > > Please click the address below, or copy and paste the URL into your Web browser: > > http://www.aarp.org/learntech/lifelong/the_unstoppable_genius_of_michael_graves. > html > > > - > AARP's Web site provides the tools, information, and opportunities to help yo! u & gt; get the most out of life. Discover the latest AARP member benefits, discounts > and special offers including savings on online services. > http://www.aarp.org/ >
[TMIC]An Article From www.aarp.org re M. Graves
Hildred thought you might be interested in this page on AARP's Web site: --- Message from Hildred Do yall remember this guy from a few years ago? He got TM while in Germany and was sent to the same rehab facility Chris Reeves had been in. I wondered what had happened to him! - Please click the address below, or copy and paste the URL into your Web browser: http://www.aarp.org/learntech/lifelong/the_unstoppable_genius_of_michael_graves.html - AARP's Web site provides the tools, information, and opportunities to help you get the most out of life. Discover the latest AARP member benefits, discounts and special offers including savings on online services. http://www.aarp.org/
RE: [TMIC] RE: Lyrica
Alan, I have just gone on Medicare and am in the process of leaving Kaiser and getting all new doctors. My new neurologist is wonderful in that he is willing to work with me on different meds. I was getting very concerned about the Neurontin and memory loss. I have been on it for four years. I am taking 600 mg. 4x day. He wanted me to decrease the Neurontin and I also decided to get off Paxil. So we tried Cymbalta. New med for depression. They found out that it was not so great for depression but seemed to help many with pain! Tried it for one month. Did not seem to help me and I didn't really care for it. So when I see him next week I am going to try the Lyrica. We talked about it, but thought we might give Cymbalta a try. (It's also quite expensive and I understand going up in price in July). So we can compare experiences with the Lyrica. Trudy -Original Message- From: Alan Junghans [mailto:[EMAIL PROTECTED] Sent: Sunday, April 30, 2006 8:02 PM To: tmic-list@eskimo.com Subject: [TMIC] RE: Lyrica Response from my Neuro: We will send you some samples. You will receive two bottles of Lyrica 75 mg capsules (total 60 capsules). You take one Lyrica 75 mg twice a day for 7 days (using up 14 capsules), then two capsules together twice a day. Start cutting down your Neurontin by half when you start Lyrica two capsules twice a day. Write me after 7 more days to let me know how you are doing. Eugene Lai, MD, PhD This sounds logical to me. At least he has an open mind to my suggestions when I want to try a new approach. I will chronicle my expereience with this and share it with everyone as I go. Alan
[TMIC] RE: Lyrica
Response from my Neuro: We will send you some samples. You will receive two bottles of Lyrica 75 mg capsules (total 60 capsules). You take one Lyrica 75 mg twice a day for 7 days (using up 14 capsules), then two capsules together twice a day. Start cutting down your Neurontin by half when you start Lyrica two capsules twice a day. Write me after 7 more days to let me know how you are doing. Eugene Lai, MD, PhD This sounds logical to me. At least he has an open mind to my suggestions when I want to try a new approach. I will chronicle my expereience with this and share it with everyone as I go. Alan
Re: [TMIC] thanks! (& back pain query)
In a message dated 4/30/2006 5:16:35 PM Central Standard Time, [EMAIL PROTECTED] writes: Hi,Thanks so much for all the positive and helpful replies to my recent post. Sorry it's taken a while to reply, but I'm still doing all the physio and rehab stuff etc. and find I don't have the energy most times for much else right now. (Also I hurt my back so couldn't sit here for a while). But it really did mean a lot to hear from you all, and I appreciate it. :-) I'm seeing my dr tomorrow about getting on some antidepressants, so hopefully things may improve.I have another question if you don't mind; I've been pushing myself a bit hard the last week, and trying so hard to get mobility. I went out my backyard (down 8 steps) on crutches, (clinging on to the banister mainly), and really hurt my wrists and arms, because most of my weight was being carried by them. In the house I've been able to use a full forearm support frame, which I carry most of my weight through my upper arms, leaning on them and wheeling forward. It's OK for short time, but I get very fatigued from it, and of course, can't use my arms when using it. My left leg can't bear any weight at all, and isn't able to move much, but right leg can bear some weight for very short time, before it collapses and often goes spastic, but it's OK to propel forward in a full forearm walker for short 'walks'. However, my question is this; when I went down the yard, (and up steps again on my bottom), I found that I really hurt my back, and the pain in my back and left leg also was so severe it was really hard to cope with. I also have gotten the bad back pain if I use the forearm frame for too long. The pain really limits what I can do, because it can take days or even a week or so to recover from it, and then I'm really stiff again and have to start from scratch again. Is this a normal part of TM? Is there a way of avoiding that, or working through it? It's hard for me here, because none of the doctors (or even my specialist), or physiotherapists, know much about TM. Most don't know anything about it; so not really sure how to proceed. They're treating it in physio similar to stroke patient. The physiotherapist I'm with says she's never had anyone with this condition before. It makes it a bit hard. Is recovery and physio similar to stroke patients? Anyhow; not blaming the physiotherapist, because going down my backyard was my idea - the physio's have actually been very gentle and careful about doing stuff. But I just so badly need to get mobility again, because I have 7 aviaries in my yard, (it's a fairly large property, so is a bit of a trek down there as well). I have been a wildlife carer for 14yrs now, and over that time, have taken in quite a number of unreleasable animals, and some unwanted pet birds, that are all beautiful and very special, have become practically family to me. But I only have until June or July before I'll lose them all, if I can't get down there to tend to them; as I asked friends and family to give me that long to recover, so I wouldn't have to lose them. I made a roster, and people come and feed my backyard aviary animals every day, so they're all still well cared for. But obviously I can't expect people to continue to do this indefinitely. It's been a huge favour to even ask them to help me for 6 months! Yet the time is getting away, and I still am so far from being able to get out there, and into aviaries, to look after them all. It will break my heart to lose them, and I don't think I'd cope if that happens. I can't even be sure of getting good homes for them all; and I'd need to be sure they'd all be OK. (This is mainly why I signed myself out of hospital early (against medical advice); because I needed to be sure they were all OK). I'd started a rare fauna network just before I became ill, and we were going to be tracking and helping out the rare yellow bellied glider in this area, and also to help monitor and help with the koala atlas. (I did a koala care course in November, a month before getting TM. All of this I've lost now. I was working at Taronga Zoo last year at this time, doing very physical work. I can't believe that I'm now in a wheelchair unable to walk. On the positive side; one thing that I haven't lost though, is the network for Australian wildlife carers, which I run, and do the website for. At least I can do that whilst disabled. (The network forum and website I designed is www.ozark.wild.net.au if anyone is interested to have a look. The story about one of the ybg I cared for is under 'information' -->'discussion' if you were wondering what they are). Also; am doing some crafts which help to take away the huge stress and depression. It helps a lot. Anyway
[TMIC] thanks! (& back pain query)
Hi, Thanks so much for all the positive and helpful replies to my recent post. Sorry it's taken a while to reply, but I'm still doing all the physio and rehab stuff etc. and find I don't have the energy most times for much else right now. (Also I hurt my back so couldn't sit here for a while). But it really did mean a lot to hear from you all, and I appreciate it. :-) I'm seeing my dr tomorrow about getting on some antidepressants, so hopefully things may improve. I have another question if you don't mind; I've been pushing myself a bit hard the last week, and trying so hard to get mobility. I went out my backyard (down 8 steps) on crutches, (clinging on to the banister mainly), and really hurt my wrists and arms, because most of my weight was being carried by them. In the house I've been able to use a full forearm support frame, which I carry most of my weight through my upper arms, leaning on them and wheeling forward. It's OK for short time, but I get very fatigued from it, and of course, can't use my arms when using it. My left leg can't bear any weight at all, and isn't able to move much, but right leg can bear some weight for very short time, before it collapses and often goes spastic, but it's OK to propel forward in a full forearm walker for short 'walks'. However, my question is this; when I went down the yard, (and up steps again on my bottom), I found that I really hurt my back, and the pain in my back and left leg also was so severe it was really hard to cope with. I also have gotten the bad back pain if I use the forearm frame for too long. The pain really limits what I can do, because it can take days or even a week or so to recover from it, and then I'm really stiff again and have to start from scratch again. Is this a normal part of TM? Is there a way of avoiding that, or working through it? It's hard for me here, because none of the doctors (or even my specialist), or physiotherapists, know much about TM. Most don't know anything about it; so not really sure how to proceed. They're treating it in physio similar to stroke patient. The physiotherapist I'm with says she's never had anyone with this condition before. It makes it a bit hard. Is recovery and physio similar to stroke patients? Anyhow; not blaming the physiotherapist, because going down my backyard was my idea - the physio's have actually been very gentle and careful about doing stuff. But I just so badly need to get mobility again, because I have 7 aviaries in my yard, (it's a fairly large property, so is a bit of a trek down there as well). I have been a wildlife carer for 14yrs now, and over that time, have taken in quite a number of unreleasable animals, and some unwanted pet birds, that are all beautiful and very special, have become practically family to me. But I only have until June or July before I'll lose them all, if I can't get down there to tend to them; as I asked friends and family to give me that long to recover, so I wouldn't have to lose them. I made a roster, and people come and feed my backyard aviary animals every day, so they're all still well cared for. But obviously I can't expect people to continue to do this indefinitely. It's been a huge favour to even ask them to help me for 6 months! Yet the time is getting away, and I still am so far from being able to get out there, and into aviaries, to look after them all. It will break my heart to lose them, and I don't think I'd cope if that happens. I can't even be sure of getting good homes for them all; and I'd need to be sure they'd all be OK. (This is mainly why I signed myself out of hospital early (against medical advice); because I needed to be sure they were all OK). I'd started a rare fauna network just before I became ill, and we were going to be tracking and helping out the rare yellow bellied glider in this area, and also to help monitor and help with the koala atlas. (I did a koala care course in November, a month before getting TM. All of this I've lost now. I was working at Taronga Zoo last year at this time, doing very physical work. I can't believe that I'm now in a wheelchair unable to walk. On the positive side; one thing that I haven't lost though, is the network for Australian wildlife carers, which I run, and do the website for. At least I can do that whilst disabled. (The network forum and website I designed is www.ozark.wild.net.au if anyone is interested to have a look. The story about one of the ybg I cared for is under 'information' -->'discussion' if you were wondering what they are). Also; am doing some crafts which help to take away the huge stress and depression. It helps a lot. Anyway; sorry again for the long blurb. (I'm waiting at present for one of my 'feeders' to come to do my birds, but he's not arrived yet; (which is probably why this is so long!) Thanks all. Take care, and all my best
Re: [TMIC]
Hello Chantal, This is Heather and I live in Calgary. On the TM Forum I am known there as 'Sew'. Yes, Lyrica is being taken by some people with TM. 'Most' people seem to find it is working very well for them and they are easing off Neurontin/Gabapentin onto the Lyrica. It can take a while to do that. In Canada it is not covered under medical unless you have some private medical coverage and then it may be covered. I have priced it here in Calgary and it is $92.00 for 50 pills that are 75 mg per pill. That can get to be pretty pricey. I think that most people here on the TMIC are taking up to 300 mg. per day. I figured that for a year that would work out to just over $2,000. I was at a Group Support meeting for people who suffer from Peripherial Neuropathy. There was a fellow there who is taking 600 mg per day. He suffers from cancer so is also on lots of other meds. Heather in Calgary - Original Message - From: "Gaet's" <[EMAIL PROTECTED]> To: "TM subscriber" Sent: Thursday, April 27, 2006 7:09 AM Subject: [TMIC] Hi, Can someone tell me if Lyrica is taken for TM or for other medical reason thanks have a nice day Chantal in canada -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.385 / Virus Database: 268.4.6/324 - Release Date: 4/25/2006
[TMIC] OT~ FOSAMAX
Hi All ~ I've been trying to get a couple of my friends to stop taking Fosamax because I've been hearing so many bad things about it.about a week ago it was on the news that it causes some sort of necrosis of the jaw and then today I received this letter from a girlfriend and decided to just share it with all of you in case any of you are taking this stuff. Hugs, Lynn... Here's her letter: >>>Well, I did a google search on Fosomax. Shouldn't have done it. Scaresthe sh** out of me. If you are trying to talk someone else out of takingit, you might mention hair loss. Not a documented side effect, it keepspopping up here and there. Not to mention soft tissue pains, kidney pain,bone pain, major headaches, GI upsets to the point of some people havingto stay on drugs for the rest of their lives, calcifications in breasts,one guy needed bypass surgery due to a blockage SO heavy and hard thatthey could not remove it other than with bypass, and on and on it goes.There are more horror stories out there than you can shake a stick at. Iam S done with this crap.Lynn, I just ache, and I'm tired all the time. I get like weird cramps inmy legs and arms. I NEVER had this sh** before. I am WAY done with thisstuff. And yet there are people who are saying they have had no problems withFosomax. I ain't one of them.Just go and do a search on this, you won't have to read far.>>>
