Re: [TMIC] Thanks
WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janh Stillwater, OK From: Towery, Ruben Dale rdtow...@southernco.com To: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started my therapy with my psychologist and feel like the mental side of things are starting to get a little better. I am starting PT and OT today at home and hope this will help with my balance and strength in my legs, cause this has definitely gotten worse over the last
Re: [TMIC] Thanks
Hindsight is 20-20 My first numbness was Sept 11 I went to a chiropractor for several weeks When i began to be constipated I went to the doctor... as this progressed I had increasing back pain. I had cartoon legs on Oct.4 and drove myself from work to the emergency room spent a long weekend in the hospital but drove myself home to take oral steroids used a cane then got rid of the cane and then it struck again on 11/14 this was in 2005. I wish i had had the blood replacement therapy in October and perhaps i would have avoided becoming paralyzed in November read as much as you can and ask your Drs about options for treatment as the earlier the intervention, the better the outcome --
Re: [TMIC] Thanks
Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janhStillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back
Re: [TMIC] Thanks
Rueben, I don't know how to explain 'going forward'..I was struck down 14+ years ago at 57 years of age. I was paralyzed from t8...so I had to learn to walk again. I think the key to my recovery was no one told me I wouldn't get better. When he released me from the hospital/skilled nursing, my nuero only told me one thing wouldn't return. That was my temperature control, I sweat only from shoulders up, and he was correct. Except in '04 I got a fever of unknown origin and with a week in local hospital, and a week in OKC hos- pital, I continue to have chills/sweats at strange timesnothing like it was, but another quirk in my health. Like tm, I'd never heard of a fever of unknown originguess that makes me unique, or strange or that my immune system works overtime fighting it self. Enough of me..for now, don't expect too much of yourself 'cause that'll make failure appear possible. Just take things slow...do something that you can share with your kids.they'll love to be a part of your getting better. I'm thinking positive thoughts for you. janh From: Towery, Ruben Dale rdtow...@southernco.com To: Jan Hargrove jmh1...@sbcglobal.net Cc: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 5:40:25 PM Subject: Re: [TMIC] Thanks Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janh Stillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet
Re: [TMIC] Thanks
i'm stuck and fortunately-- though i didnt think so at the time i was stuck away from home in another city but this other city had on demand paratransit and my life felt nearly normal. the paratransit was available 20 hours a day 7 days a week so i could work, teach, go to shows, plays, movies-- and i did-- and also did all my shopping for myself only at home at last did i become crippled because i can go nowhere, and get nothing not even can i be assured of a ride to medical appointments and i had to give up physical therapy because the agency that subsidized the occasional ride rationed services to 3 trips max per month to doctor only, between the hours of 10 and 2, if you're lucky so i've been working on creating a paratransit nonprofit after a year of begging, explaining and letter writing. my municipality SUCKS big time-- they're contemplating getting rid of seven firefighters and the firemen are the best first responders here-- faster than the ambulance/911 and way better than police. sorry for the rant but back to what you asked. call around. if your community is more enlightened than mine, you have either public or private paratransit-- folks to help you get from a to b hook up with physical therapy asap. if you live in an enlightened place there may be transport to the therapy ( as there was in Rochester) There are LOTS of paratransit/lift equipped vehicles in my area, ARC, pathways, school buses, the thing is you, like i, as a former able bodied person who was not in the system, don't fit any of the target populations for help BUT your community may be smarter and kinder than mine and SO these organizations with vehicles may extend their support to you--- or maybe even your public transport has a service as all the counties surrounding mine do so make lists, call, and write AND just in case you live in as unrigorous a place as I do, call every place at least twice if you don't get the answer you want, because the next day the answer may change ( i have a story about filling out a form for transport sending it to the bus company-- a 3 month process only to find out the day before my drs appointment that the pick up service did not serve my city. then spent another 6 months fighting to get the bus company who gets federal funds to do route deviation, to do route deviation and assist me over the grassy media on to the bus i can't use them because after twice making reservations and taking the bus didn't have tie-down equipment-- two life risking rides is two too many but again, your municipality may be more rigrous, enlightened and suppportive of its physically challenged citizens) Akua --
Re: [TMIC] Thanks
We are just glad you joined us and want to hear from you whenever possible. Also, feel free to jump in at any time to give your advice or opinion of anything. Janice, Missouri -- From: Towery, Ruben Dale rdtow...@southernco.com Sent: Friday, June 04, 2010 8:28 AM To: tmic-list@eskimo.com Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started my therapy with my psychologist and feel like the mental side of things are starting to get a little better. I am starting PT and OT today at home and hope this will help with my balance and strength in my legs, cause this has definitely gotten worse over the last week. I justed wanted to elaborate more on myself since people have asked. Hope this was not to long, but I am having to learn how to be more expressive with my feelings to cope with my problems. I am so glad I found this list and feel blessed that I am now a part of it. I would just like to ask every one to keep me in your prayers as I start this difficult journey to recovery. Thanks again for all of your support. Thank you so much. Ruben Towery Mount Olive, AL (Birmingham, AL) Sent from my iPod
Re: [TMIC] Thanks
Great reply, Jan.I hope both Ruben and Kelly Jean read this and take it to heart. Janice From: Jan Hargrove Sent: Friday, June 04, 2010 11:04 AM To: Towery, Ruben Dale ; tmic-list@eskimo.com Subject: Re: [TMIC] Thanks WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janhStillwater, OK From: Towery, Ruben Dale rdtow...@southernco.com To: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22 of this year, I woke up with numbness, pain, and tinkling in my upper legs and buttocks area. I dismissed this as the Fibro had just moved to a different location. I drove myself to work and after parking my truck in our deck I started walking towards our crosswalk and got to where I could no longer control my legs and basically felt paralyzed. Two gentleman where nice enough to get my truck for me and I was able to drive myself to the emergency room. When I arrive there I was having a full blown panic attack and was scared to death. The doctors there calmed me down and sent me home and dismissed it as being fibro pain. I called my rheumatologist and he told me to see my physical medicine doctor. I got in to see him the next day and after an MRI they saw the inflamation in my spine and it was located on the conus area of my spinal cord. They immediately admitted me into the hospital and started me on steroids and did multiple MRI's, a spinal tap, and tons of blood work. I spent 4 days there before they sent me home under the care of my neurologist. After spending time recovering at home and also seeing a nuerology specialist at UAB, I was seeming to be getting better. I was able to start getting around with the assistance of a cane. After 3 weeks my neurologist decided that it would be appropriate for me to drive again and go back to work. After a week of this, I was starting to get worse. Also during the time I was off work I saw a neuro psychologist to try and determine what was going on with me having the memory loss and other cognitive issues. After his testing it was determines that I am suffering from major anxiety and depression and reccomended I start back seeing my psychatrist and psyxhologist to deal with these issues and to not return to work or drive until these problems get better. My wife, myself and my neurologist decided that staying at home and continue recovery, both pysically mentally. My pysical pain has gotten worse over the last severla weeks, but I have started
Re: [TMIC] Thanks
Ruben, That is part of the isolated feeling - not being able to get out like we used to, and having so rare a disease that no one can understand what you are going through. When the doctors get your pain/numbness/discomfort under control, your life will open up more. Just keep bugging them to help you control these problems as much as possible. They don't know unless you tell them. I have found that I have improved, even past the 2-year mark.It takes a lot of physical therapy and it doesn't hurt to be on a medication for depression. I wasn't depressed in the sense that I would not respond to anyone, I just needed a boost to accept what has happened and help me to WANT to keep working to improve the situation if at all possible. Things do get better, but it takes time. Be patient and work hard - you can do this. There are a lot more of the TM'ers that are worse off than you seem to be and they have improved even past the 7th year. Good luck and keep emailing in to us. We want to hear from you whether questions or comments or advice. Janice, Missouri -- From: Towery, Ruben Dale rdtow...@southernco.com Sent: Friday, June 04, 2010 5:40 PM To: Jan Hargrove jmh1...@sbcglobal.net Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Thanks Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janhStillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep depression and started having major anxiety and panic attacks and this really started affecting my relationships with my wife and kids, and also started causing major issues at my work to the point where I was almost terminated from my job. Luckily I have a great boss who went to bat for me knowing that I had something medical going on that the doctors had just not been able to determine yet. Then on April 22
Re: [TMIC] Thanks
Jan, I have the lack of temperature control too. I hate it so much It makes me feel weak and miserable. Do you have anything that you take to try to help the situation? Janice From: Jan Hargrove Sent: Friday, June 04, 2010 6:08 PM To: Towery, Ruben Dale Cc: tmic-list@eskimo.com Subject: Re: [TMIC] Thanks Rueben, I don't know how to explain 'going forward'..I was struck down 14+ years ago at 57 years of age. I was paralyzed from t8...so I had to learn to walk again. I think the key to my recovery was no one told me I wouldn't get better. When he released me from the hospital/skilled nursing, my nuero only told me one thing wouldn't return. That was my temperature control, I sweat only from shoulders up, and he was correct. Except in '04 I got a fever of unknown origin and with a week in local hospital, and a week in OKC hos- pital, I continue to have chills/sweats at strange timesnothing like it was, but another quirk in my health. Like tm, I'd never heard of a fever of unknown originguess that makes me unique, or strange or that my immune system works overtime fighting it self. Enough of me..for now, don't expect too much of yourself 'cause that'll make failure appear possible. Just take things slow...do something that you can share with your kids.they'll love to be a part of your getting better. I'm thinking positive thoughts for you. janh From: Towery, Ruben Dale rdtow...@southernco.com To: Jan Hargrove jmh1...@sbcglobal.net Cc: tmic-list@eskimo.com tmic-list@eskimo.com Sent: Fri, June 4, 2010 5:40:25 PM Subject: Re: [TMIC] Thanks Thanks Jan, I know I still have a long way to go as I am new to this. My body is going through so many things right now. I can only thank God that I was able to get into the hospital and get the solumedral (steroids) within 24 hours of my attack, and also that I am still able to walk even though it is with a cane. I still have the numbness, pain, and the pins/needles in mybuttocks and my upper legs. I do have a question for all of you TMers out there. How has everyone learned hoa to deal with th isolation of being stuck at home all the time and unable to drive? I am a 31 year old husband and father who has always been very active with my family, and I feel like this has really been taken away from me. Besides all the pain, this is the hardest thing that I am dealing with. Thanks to all out there for the support. Sent from my iPod On Jun 4, 2010, at 11:04 AM, Jan Hargrove jmh1...@sbcglobal.netmailto:jmh1...@sbcglobal.net wrote: WOW!! You've really been put through the 'diagnostic' wringer!! I'm glad that you've finally received a diagnosis and the right help. I'm also glad you found this site...I'm sure there are some folks here who can relate to the varied problems you've had. I know the pain can be debili- tating at timesbut as you know, some days are better than others. They say that laughter is the best medicine.lauch as frequently as possible. My hubby had a collection of Johnny Carson tapes, and when things seemed unbearable he'd bring Johnny out and things would be bettercould be that I was thinking about something besides the pain?? Keep a positive attitude! When you need to 'scream', write to the list, we'll understand and it won't be quite so difficult for your family to see you down. Know that we care, and if you have questions, ask away..someone on here will relate. As with snowflakes, no rwo of us (flakes) has the exact problems, we share some with everyone.. Welcome to our world!! janhStillwater, OK From: Towery, Ruben Dale rdtow...@southernco.commailto:rdtow...@southernco.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Fri, June 4, 2010 8:28:06 AM Subject: [TMIC] Thanks I just wanted to thank everyone for their responses to my questions. I am so happy that I found this email list. I wanted to elaborate on myself and how TM has affected my life with you guy/gals. As I mentioned before I have been dealing with chronic back pain since about February of 2009. I saw multiple doctors for this and and a bunch of MRI's, other scans, and tons of blood work done and none of them could figure out what was going on. Finally back in November my rheumatologist and my physical medicine doctor decided, very reluctantly I must say, that I had Fibromyalgia. So myself and my wife along with my doctors started treating my symptoms as this. Although going through this process of treatments, nothing was getting better and my upper back was seeming to get worse at times. I just started to learn how to deal with the pain and mental aspects associated with the Fibromyalgia. During all of this time, I went into a deep
Re: [TMIC] thanks for your input - tell me more about meiners
I have the same bee stinging feelings from head to toe, especially at night. That feeling is central neuropathic pain. Try Dextromethorphan 60 mg twice a day, or cannabinoids (MARINOL 5 mg every 6 hours). The Fentanyl and Vicodan will turn you into an addict Good Luck F
Re: [TMIC] thanks for your input - tell me more about meiners
Randy, I have the same bee stinging feelings from head to toe, especially at night. I am a para from T3 on down with no sensation or movement. I wake up every two hours at night with the stinging sensation. My right hand has it and I also have the back stinging. I wear a Fentanyl 100mcg pain patch and it is sufficient to take the edge off the worst of it. For breakthrough pain, I take Vicodan 5.5mg. Maybe one of your doctors or specialists will prescribe one of these meds for you. If so, I sincerely hope that you have good luck with them. You might want to email Barbara in California. She can't even stand the feeling of light sheets next to her skin because of the sensitivity. Best of everything to you...I will send positive thoughts of you to the Spirit in the Sky. Jude In a message dated 11/9/2008 5:25:28 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: - but i still get a different pain - my face and neck feels like i had been stung by bees - burning sensations in my head - numbness in my hands - pain in my right hand like i wasp sting - and since yesterday, pain in my lower back/gluts but i have those a lot anyway **AOL Search: Your one stop for directions, recipes and all other Holiday needs. Search Now. (http://pr.atwola.com/promoclk/10075x1212792382x1200798498/aol?redir=http://searchblog.aol.com/2008/11/04/happy-holidays-from -aol-search/?ncid=emlcntussear0001)
Re: [TMIC] Thanks everyone.
Dear Friends, Please forgive me for replying to everyone as a group who sent me such kind messages, my hands don't allow me to type very much now. I can't express how meaningful your replies were to me. The members of this group are the only people who truly understand what we are each dealing with. My Mother does the best she can to understand, and I am grateful to her for that. Everything I have tried to do to improve my life since TM has run me into one brick wall after another. I've had a physical therapist at my home who wanted me to walk around the block the first day of therapy..she didn't last long. I got a power wheelchair and was promised it would fit in my small suv..it didn't. Monitoring my Mom's medications is a full time job in itself, which I am happy to do. There's much more, including lack of family support, and worse. I'm looking for glimmers of hope, I used to be a very positive person, even worked a very physical job as a photographer for 12 years after onset of TM. Not a pity party, just facts, and fatigue and pain. Thanks for being there. Love you all, Kevin
Re: [TMIC] Thanks to the list/understanding TM
I think we need to be realistic about this. If I had a husband who was disabled I am not sure I would be happy all the time. You can't fully understand anything if you haven't walked in someone else's shoes. Just like anything in life. Everyone is different. Some people can handle it and some can't. Going through 18 months of cancer with my husband was no walk in the park. Not being able to take away his pain and watching him die was way more difficult than TM for me. But I would never have left him and he would have never left me after I got hit with TM. He stepped up to the plate and did all the things I could not do and sometimes I feel like was there something else I could have done for him. It will be three years on April 21 that he died. Life has been quite a journey. But I finally feel like I can go on. So many emotions and changes in the past few years. My Mother-in Law would like me to find someone, but I don't know. Even though I do pretty well, I can't see myself with someone normal. I know they would not understand what I am going through and I don't want to worry about that. Linda in Pa **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp0030002851)
RE: [TMIC] Thanks to the list/understanding TM
I think there is a lot of good information on this site for caretakers. This is exactly why I stay on this list. I also want to thank you all for your responses when I asked about my daughter's sore. It is doing much better since the Dr gave me the antibiotic ointment to put on it. She has been very good about making sure that she treats it two times a day. Also, if I can brag for just a moment, Ashlee got straight A's on this report card. She is on the Distinguished Honor Roll this term!!! Despite what she has been through over the last 3 years with TM, she is still able to get straight A's!!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 16, 2008 12:25 AM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Thanks to the list/understanding TM My Dear Friend Sandy, I think that you are a wonderful partner for Terry. One of the things that makes you this great partner is that you have gotten involved in being a part this group to learn about all the aspects that we TM'ers deal with on a daily basis. That has given you a great deal of insight and I would think has made it easier for you to relate to his issues as a normal part of this. Even though we are all different, in so many ways, we have so many common complaints/problems/residuals, etc. This doesn't in any way mean that you weren't committed to your marriage and wouldn't have done the same thing that you are already doing to make your lives as good as you can now. I think it just means that you have more understanding of what kind of things are going on and that you can also give him feedback from the group. I certainly wish I could get my husband Pete to read some of the messages. He won't, so I stopped pushing. I think it's like therapy, it is for me anyway. I think there is a lot of good information on this site for caretakers. Hugs to you and Terry, Barbara It's Tax Time! Get tips, forms and advice on AOL Money Finance http://money.aol.com/tax?NCID=aolcmp0030002850 .
Re: [TMIC] Thanks to the list/understanding TM
Well tell Ashlee congratulations from us! You are a great mom, keeping up with this list! I am glad her sore is getting better. That is good news! Jenna - Original Message From: Tracey L. Black [EMAIL PROTECTED] To: [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Wednesday, April 16, 2008 9:49:15 AM Subject: RE: [TMIC] Thanks to the list/understanding TM I think there is a lot of good information on this site for caretakers. This is exactly why I stay on this list. I also want to thank you all for your responses when I asked about my daughter's sore. It is doing much better since the Dr gave me the antibiotic ointment to put on it. She has been very good about making sure that she treats it two times a day. Also, if I can brag for just a moment, Ashlee got straight A's on this report card. She is on the Distinguished Honor Roll this term!!! Despite what she has been through over the last 3 years with TM, she is still able to get straight A's!!! Tracey L. Black Certified Insurance Service Representative Hockley O'Donnell Insurance Agency Phone - 717-334-6741, x 29 Fax - 717-334-3414 Thank you for providing information to us. Please beware that no coverage is bound and no change to your insurance program is confirmed until verified by a licensed agent during regular business hours. If you do not hear from us within 1 business day, please re-contact us in case your information has not been retained. From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 16, 2008 12:25 AM To: [EMAIL PROTECTED]; tmic-list@eskimo.com Subject: Re: [TMIC] Thanks to the list/understanding TM My Dear Friend Sandy, I think that you are a wonderful partner for Terry. One of the things that makes you this great partner is that you have gotten involved in being a part this group to learn about all the aspects that we TM'ers deal with on a daily basis. That has given you a great deal of insight and I would think has made it easier for you to relate to his issues as a normal part of this. Even though we are all different, in so many ways, we have so many common complaints/problems/residuals, etc. This doesn't in any way mean that you weren't committed to your marriage and wouldn't have done the same thing that you are already doing to make your lives as good as you can now. I think it just means that you have more understanding of what kind of things are going on and that you can also give him feedback from the group. I certainly wish I could get my husband Pete to read some of the messages. He won't, so I stopped pushing. I think it's like therapy, it is for me anyway. I think there is a lot of good information on this site for caretakers. Hugs to you and Terry, Barbara It's Tax Time! Get tips, forms and advice on AOL Money Finance. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
Re: [TMIC] Thanks to the list/understanding TM
My Dear Friends, Thanks to all of you for your kind words. Thank you to the fellow caregivers who are committed to helping their spouses/sig others to have a better quality of life, for being in their lives and staying put!Aren't relationships suppose to be 50/50??? I am sorry for those that aren't. Terry gives so much to me; why would I not give so much in return? Some of you old timers (on this site), know there have been struggles with this life and Terry's TM. But, obviously nothing insurmountable. I will say that I was SO PISSED OFF (can I say that here?) at his wheelchair initially. I took my anger out on his wheelchair every time I had to get it in or out of the trunk of my car. I would cuss that SOB, (can I say that here?) out! I hated it! That's what I hated! I didn't hate the damn (can I say that here?) TM. I hated that damn (can I say that here?) wheelchair! That rigid piece of crap, (can I say that here)? I can actually feel my anger right now as I write this. However, I feel it with a smile on my face as that was so very long ago. TM has allowed me to grow and become a better person. It's OK now and he has a great wheelchair that's very easy to get in/out of the car. One flip of the backrest and I grab it and swing it into the back of the little (non gas guzzler), SUV. (OK, so I rambled)... Aloha for now, my friends! Sandy **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp0030002851)
Re: [TMIC] Thanks to the list/understanding TM
Don't get me wrong, my husband Pete is supportive and very helpful. Heck, I've kind of got it made these days. He just retired, and makes my coffee and breakfast, and at night, brings me my capucchino at night. Not too shabby. However, I feel that all of us can benefit from some therapy dealing with something like this. That's not something he feels is necessary. He rarely vents, but it's very apparent, especially now that he's retired, that our lives are not what we expected and planned what they would have been like when retirement came around. I hibernate in the winter, and I live in California where it doesn't usually get below 50 degrees during the day. The cold feels like it goes to my bones, which I know isn't the way it is, it's the nerves that are reacting to it. They get that way even though it's not cold in the house. I think it's the barometric pressure that actually affects them. He hates that I hardly will go out of the house, so he gets cranky sometimes. That is all he usually does. He probably mutters other things that I don't hear too. I hope he does, he has to get it out sometime. I just wish that he'd talk to somebody about his feelings. It's just not something he was exposed to growing up, so he's not comfortable doing it with other people. Hugs, Barbara A **Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp0030002851)
RE: [TMIC] Thanks to the list.
Has anyone ever figured out how to make non TM'rs understand what we go thru 24/7. If so plase sare the secret! Rob From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, April 15, 2008 3:30 PM To: Robert Pall Subject: Re: [TMIC] Thanks to the list. Rob, That's the best thing about this list.Everyone knows how it feels to have tm;it's not something that a regular person understands. Cheryl in Easthampton,Mass. Robert Pall [EMAIL PROTECTED] wrote: I would just like to thank all of the people on the list who responded to me in the past few weeks. It helped me thru a difficult time! I have been married for 38+ years and my wife has no idea what I go through on a daily basisnor do my children, my relatives and my friends. Only the people on the list truly understand what it is like to get sick and never get better! Only the people on the list relate to terms such as banding, pins needles, freezing/burning etc. Only the people who have TM can truly relate to TM and how (in my case) in just a few hours my life changed for the worse. I am sorry I and all of you have TM...but I am extremely grateful for the people on the list who always find the time to help! THANK YOU ALL! Rob in New Jersey between -00-00 and -99-99
Re: [TMIC] Thanks to the list/understanding TM
I don't have TM, my husband does, (8 years now). Therefore, I will try to speak from the standpoint of understanding. However, I don't FEEL his pain, but I SYMPATHIZE with his pain. I sympathize with; his daily issues, his paralysis, his complaints, his clonus, his feeling of inadequacies, his feelings of frustration and pain over sexual dysfunction and bladder dysfunction, his loss of his past life and of OUR past lives. I LISTEN to him. I AM THERE FOR HIM. I encourage him, I apologize for his pain and anything that will make him understand that I UNDERSTAND to a degree. But, I don't think anyone can FULLY understand unless they have TM. He knows I understand more about TM than many. But, as they say, unless you can walk the walk.. I, more than likely, will never walk that walk. I love him, I am committed to him and I will continue to do my best to understand TM thru his eyes. He is very detail oriented about it - so that in itself, helps me understand better. Anyone with a disease such as TM, needs someone to listen to them with compassion in their heart. I will always do my best to be that person. Sandy Parker Has anyone ever figured out how to make non TM'rs understand what we go thru 24/7. If so plase sare the secret! -Original Message- From: Robert Pall [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Tue, 15 Apr 2008 12:36 pm Subject: RE: [TMIC] Thanks to the list. Has anyone ever figured out how to make non TM'rs understand what we go thru 24/7. If so plase sare the secret! Rob From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, April 15, 2008 3:30 PM To: Robert Pall Subject: Re: [TMIC] Thanks to the list. Rob, That's the best thing about this list.Everyone knows how it feels to have tm;it's not something that a regular person understands. Cheryl in Easthampton,Mass. Robert Pall [EMAIL PROTECTED] wrote: I would just like to thank all of the people on the list who responded to me in the past few weeks. It helped me thru a difficult time! I have been married for 38+ years and my wife has no idea what I go through on a daily basis….nor do my children, my relatives and my friends. Only the people on the list truly understand what it is like to get sick and never get better! Only the people on the list relate to terms such as banding, pins needles, freezing/burning etc. Only the people who have TM can truly relate to TM and how (in my case) in just a few hours my life changed for the worse. I am sorry I and all of you have TM…but I am extremely grateful for the people on the list who always find the time to help! THANK YOU ALL! Rob in New Jersey between -00-00 and -99-99
Re: [TMIC] Thanks to the list/understanding TM
Sandy, I have been amazed that you have kept up with all of us as if you were the one with TM. I know you care about us and keep up with our struggles and acomplishments so I can only imagine how supportive you have been for Terry. You're fortunate to have each other. Patti - Michigan [EMAIL PROTECTED] wrote: I don't have TM, my husband does, (8 years now). Therefore, I will try to speak from the standpoint of understanding. However, I don't FEEL his pain, but I SYMPATHIZE with his pain. I sympathize with; his daily issues, his paralysis, his complaints, his clonus, his feeling of inadequacies, his feelings of frustration and pain over sexual dysfunction and bladder dysfunction, his loss of his past life and of OUR past lives. I LISTEN to him. I AM THERE FOR HIM. I encourage him, I apologize for his pain and anything that will make him understand that I UNDERSTAND to a degree. But, I don't think anyone can FULLY understand unless they have TM. He knows I understand more about TM than many. But, as they say, unless you can walk the walk.. I, more than likely, will never walk that walk. I love him, I am committed to him and I will continue to do my best to understand TM thru his eyes. He is very detail oriented about it - so that in itself, helps me understand better. Anyone with a disease such as TM, needs someone to listen to them with compassion in their heart. I will always do my best to be that person. Sandy Parker Has anyone ever figured out how to make non TM'rs understand what we go thru 24/7. If so plase sare the secret! -Original Message- From: Robert Pall [EMAIL PROTECTED] To: [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Tue, 15 Apr 2008 12:36 pm Subject: RE: [TMIC] Thanks to the list. Has anyone ever figured out how to make non TM'rs understand what we go thru 24/7. If so plase sare the secret! Rob From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, April 15, 2008 3:30 PM To: Robert Pall Subject: Re: [TMIC] Thanks to the list. Rob, That's the best thing about this list.Everyone knows how it feels to have tm;it's not something that a regular person understands. Cheryl in Easthampton,Mass. Robert Pall [EMAIL PROTECTED] wrote: I would just like to thank all of the people on the list who responded to me in the past few weeks. It helped me thru a difficult time! I have been married for 38+ years and my wife has no idea what I go through on a daily basis….nor do my children, my relatives and my friends. Only the people on the list truly understand what it is like to get sick and never get better! Only the people on the list relate to terms such as banding, pins needles, freezing/burning etc. Only the people who have TM can truly relate to TM and how (in my case) in just a few hours my life changed for the worse. I am sorry I and all of you have TM…but I am extremely grateful for the people on the list who always find the time to help! THANK YOU ALL! Rob in New Jersey between -00-00 and -99-99
RE: [TMIC] Thanks to the list.
I think a person will only understand as much as they want to put into the trying. They can research and learn, ask questions and wait for the answers, be sympathetic, remove obstacles, and soften our fall, but they have to want to or we're going to end up spending our own energy trying to teach them. We all get tired of TM and TM makes us all tired! However, it's Spring in Michigan and today that's enough for me! Patti - Robert Pall [EMAIL PROTECTED] wrote: Has anyone ever figured out how to make non TM'rs understand what we go thru 24/7. If so plase sare the secret! Rob From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Tuesday, April 15, 2008 3:30 PM To: Robert Pall Subject: Re: [TMIC] Thanks to the list. Rob, That's the best thing about this list.Everyone knows how it feels to have tm;it's not something that a regular person understands. Cheryl in Easthampton,Mass. Robert Pall [EMAIL PROTECTED] wrote: I would just like to thank all of the people on the list who responded to me in the past few weeks. It helped me thru a difficult time! I have been married for 38+ years and my wife has no idea what I go through on a daily basisnor do my children, my relatives and my friends. Only the people on the list truly understand what it is like to get sick and never get better! Only the people on the list relate to terms such as banding, pins needles, freezing/burning etc. Only the people who have TM can truly relate to TM and how (in my case) in just a few hours my life changed for the worse. I am sorry I and all of you have TM...but I am extremely grateful for the people on the list who always find the time to help! THANK YOU ALL! Rob in New Jersey between -00-00 and -99-99
Re: [TMIC] Thanks to the list/understanding TM
My Dear Friend Sandy, I think that you are a wonderful partner for Terry. One of the things that makes you this great partner is that you have gotten involved in being a part this group to learn about all the aspects that we TM'ers deal with on a daily basis. That has given you a great deal of insight and I would think has made it easier for you to relate to his issues as a normal part of this. Even though we are all different, in so many ways, we have so many common complaints/problems/residuals, etc. This doesn't in any way mean that you weren't committed to your marriage and wouldn't have done the same thing that you are already doing to make your lives as good as you can now. I think it just means that you have more understanding of what kind of things are going on and that you can also give him feedback from the group. I certainly wish I could get my husband Pete to read some of the messages. He won't, so I stopped pushing. I think it's like therapy, it is for me anyway. I think there is a lot of good information on this site for caretakers. Hugs to you and Terry, Barbara **It's Tax Time! Get tips, forms and advice on AOL Money Finance. (http://money.aol.com/tax?NCID=aolcmp0030002850)
RE: [TMIC] Thanks for prayers
Thats wonderful. Give him a hug for all of us. From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: Fri, 11 Jan 2008 23:32:22 -0600Subject: [TMIC] Thanks for prayers Cody got out of the hospital yesterday. Thank you for all your prayers and well wishes. Judy
Re: [TMIC] Thanks for prayers
That's great news Judy. Please let Cody know that he is still in our thoughts and prayers. Linda - Original Message - From: Jan Hargrovemailto:[EMAIL PROTECTED] To: Codymailto:[EMAIL PROTECTED] ; tmic-listmailto:tmic-list@eskimo.com Sent: Saturday, January 12, 2008 9:02 AM Subject: [TMIC] Thanks for prayers WHAT A BLESSING!! janh Cody [EMAIL PROTECTED]mailto:[EMAIL PROTECTED] wrote: Cody got out of the hospital yesterday. Thank you for all your prayers and well wishes. Judy
Re: [TMIC] thanks
Yes, Larry and Jenna, moving from Hawaii to the mainland does seem backwards. But isn't that kinda what TM does to our whole life - everything that used to work, now seems upside down and backwards? :) (Just kidding - it seems that way, but at the same time I'd be the first to admit that negative events sometimes bring positive opportunities that we might otherwise have missed!) Happy Winter to us all, from one who's spacticity worsens when the temperature drops below 77 degrees! Sally
Re: [TMIC] thanks
Wow Sally, From Hawaii (I think that is where you are) to Utah. Weather change for sure. Don't be surprised if you feel different sensations in your limbs as well with the altitude and weather changes. Otherwise, glad you will be back with us in the new year. Looking forward to hearing from you then. Safe journey, Heather in Calgary - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, November 19, 2007 11:51 AM Subject: [TMIC] thanks I'll be 'unsubscribing' soon as I'm moving to the mainland and too busy getting ready to read much email - and also, my computer will be in storage for a couple of months! But first I want to thank everyone for all the comments and replies that have helped me to 'hang in there' and at least have an idea of what to expect and how to best deal with this great adventure called TM. I'm still gaining ground after 2 1/2 years - just recently I'm actually feeling the muscles in my previously paralyzed leg - and now realize that it's no wonder I couldn't walk better, sooner, as I couldn't even feel my muscles, much less use them! :) On the other hand, my much overused left leg is still apparently dealing with some inflammation from the over-use and resultant piriformis syndrome causing sciatica pain! But I'm sure part of the pain is also the typical burning caused by the neuropathic pain, so it's confusing to know just what to do. But anyway, I wanted to thank everyone and wish you all a Happy Thanksgiving! I'll rejoin you sometime next year when I get re-settled. Love to you all, Sally PS: I'm excited to get to Utah to meet a fellow TMer (Denise Preston) who I've already talked to on the phone. We'll be living fairly close to each other and she's already shared with me some of the resources available in that area! -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.503 / Virus Database: 269.16.0/1137 - Release Date: 11/18/2007 5:15 PM
RE: [TMIC] thanks
Sally, Stop right now, don't do another thing. There is something wrong with your reality. Your not thinking right. I think everyone in the group will agree with me. Your supposed to move to Hawaii not move from. You have it backwards. It must be your TM causing you to get things all topsy-turvy and mistaken. Now go lay down, fix a cocktail, put on a little Tiny bubbles and relax. It'll all be better soon. Larry in Oklahoma who wishes he were there for the winter. From: [EMAIL PROTECTED]: Mon, 19 Nov 2007 18:51:39 +To: [EMAIL PROTECTED]: [TMIC] thanks I'll be 'unsubscribing' soon as I'm moving to the mainland and too busy getting ready to read much email - and also, my computer will be in storage for a couple of months! But first I want to thank everyone for all the comments and replies that have helped me to 'hang in there' and at least have an idea of what to expect and how to best deal with this great adventure called TM. I'm still gaining ground after 2 1/2 years - just recently I'm actually feeling the muscles in my previously paralyzed leg - and now realize that it's no wonder I couldn't walk better, sooner, as I couldn't even feel my muscles, much less use them! :) On the other hand, my much overused left leg is still apparently dealing with some inflammation from the over-use and resultant piriformis syndrome causing sciatica pain! But I'm sure part of the pain is also the typical burning caused by the neuropathic pain, so it's confusing to know just what to do. But anyway, I wanted to thank everyone and wish you all a Happy Thanksgiving! I'll rejoin you sometime next year when I get re-settled. Love to you all,Sally PS: I'm excited to get to Utah to meet a fellow TMer (Denise Preston) who I've already talked to on the phone. We'll be living fairly close to each other and she's already shared with me some of the resources available in that area!
Re: [TMIC] thanks
Larry, I agree with you! Jenna - Original Message From: Larry Throne [EMAIL PROTECTED] To: [EMAIL PROTECTED] [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Monday, November 19, 2007 8:04:37 PM Subject: RE: [TMIC] thanks Sally, Stop right now, don't do another thing. There is something wrong with your reality. Your not thinking right. I think everyone in the group will agree with me. Your supposed to move to Hawaii not move from. You have it backwards. It must be your TM causing you to get things all topsy-turvy and mistaken. Now go lay down, fix a cocktail, put on a little Tiny bubbles and relax. It'll all be better soon. Larry in Oklahoma who wishes he were there for the winter. From: [EMAIL PROTECTED] Date: Mon, 19 Nov 2007 18:51:39 + To: tmic-list@eskimo.com Subject: [TMIC] thanks I'll be 'unsubscribing' soon as I'm moving to the mainland and too busy getting ready to read much email - and also, my computer will be in storage for a couple of months! But first I want to thank everyone for all the comments and replies that have helped me to 'hang in there' and at least have an idea of what to expect and how to best deal with this great adventure called TM. I'm still gaining ground after 2 1/2 years - just recently I'm actually feeling the muscles in my previously paralyzed leg - and now realize that it's no wonder I couldn't walk better, sooner, as I couldn't even feel my muscles, much less use them! :) On the other hand, my much overused left leg is still apparently dealing with some inflammation from the over-use and resultant piriformis syndrome causing sciatica pain! But I'm sure part of the pain is also the typical burning caused by the neuropathic pain, so it's confusing to know just what to do. But anyway, I wanted to thank everyone and wish you all a Happy Thanksgiving! I'll rejoin you sometime next year when I get re-settled. Love to you all, Sally PS: I'm excited to get to Utah to meet a fellow TMer (Denise Preston) who I've already talked to on the phone. We'll be living fairly close to each other and she's already shared with me some of the resources available in that area! Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs
Re: [TMIC] Thanks!
In a message dated 9/13/2007 4:56:14 PM Eastern Daylight Time, [EMAIL PROTECTED] writes: Thanks Jude... and the other folks who have welcomed me into this community. I have been lurking and learning about how to cope with TM since July and I have to say you are an amazing group of people. I don't have much wisdom to offer (okay, I did email Frank about Hen3ry and Tom Lehrer as my husbands a fan and has the complete collection) but that's about it. and I haven't tipped over backwards in a wheelchair yet but if my sense of balance takes one more hit I'm gonna need a cane to avoid embarrassing encounters with lampposts and local officers (this college town has a real reputation for being a party school) I see my neuro Oct 1 and am trying to think of all the questions I could possibly write down to ask him about meds, treatments, recovery etc. Anybody have suggestions for my list? Mindy the artisan Mindy, We are all so happy that you decided to make yourself knowns to us. It is a gift to meet one more unfortunate TM'er, willing to share a bit of herself, her disease experience, and her ability to feel free enough to discuss upcoming events and the willingness to ask for help and ideas regarding her first trip to the neurologist. I did my forte'...that of welcoming you and helping you feel safe enough to open up and ask the questions you need help with. Now it is up to some of the others to help with your questions because I know next to nothing about who runs what, who is going to give you an idea of what to ask the neurologist when your time for your appointment nears, and all of that kind of stuff. Best of everything, my dear. Make a list and stick to it.! Jude, from Michigan Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever 2 Corinthians 4:17 NLT ** See what's new at http://www.aol.com
Re: [TMIC] thanks for rollator suggestions!
Oh Dear, I guess I have mislead you Kevin. I do not have 'hand brakes'. I guess mine are just parking brakes. I hope this had cleared up my information to you. Heather in Calgary - Original Message - From: Butcher, Bernie [SFS] To: Kevin Wolfthal ; Heather Pieter ; tmic-list@eskimo.com Sent: Monday, April 16, 2007 6:03 AM Subject: RE: [TMIC] thanks for rollator suggestions! My rollator has individual brakes upon squeezing, the problem is, when I sit (on a chair) my rollator rollates away from me. no parking brake. It would also be nice to have a parking brake so I could use the rollator like a regular walker when I want to. BERNARD BUTCHER -- From: Kevin Wolfthal [mailto:[EMAIL PROTECTED] Sent: Sunday, April 15, 2007 6:35 PM To: Heather Pieter; tmic-list@eskimo.com Subject: Re: [TMIC] thanks for rollator suggestions! Heather, I wish that I would be able to engage both brakes with one hand, so I may have to re-think the Hugo. I'm pretty sure there are such rollators. I'm glad yours has helped you and your Mom. Take care, Kevin Heather Pieter wrote: Kevin, My walker is not called a Hugo, can't remember the name right now but looks much like the Hugo. My brakes can be engaged one brake at a time. So you can hook your cane onto the handle if need be and do one brake at a time. My mother with diabetic neuropathy uses her walker 'all the time' in her home and out. She just does not walk without it at all. My sister with MS uses hers when need be and I use mine when shopping alone or going for a walk. I don't need mine in the house just yet but perhaps in a few years I might. Hope you enjoy yours. Heather in Calgary - Original Message - From: Kevin Wolfthal To: [EMAIL PROTECTED] ; Tmic-list@eskimo.com Sent: Sunday, April 15, 2007 3:01 AM Subject: Re: [TMIC] thanks for rollator suggestions! Hi again, One more question, can the brakes be operated with either hand, or do you have to press them both together. I may use it sometimes with a cane in one hand. Thanks, Kevin Candis Kalley wrote: I think so. I can lift at max 10# or so and I lift my Hugo into my SUV. On Hugo, you lift the seat up and there is a strap that you pull and the Hugo folds right up. I usually have to study myself against the back of the car to lift but like I said I am limited on my lifting. I live by myself so I'm very in independant and manage just fine. The only times I've had problems is when someone tries to help. It throws my rhythm off of lifting and turning to get Hugo into the car. You will always have a seat available with Hugo plus the added support to walk and carry things. I have carried a whole car load of groceries on Hugo. 2 bags on each handle and several on the seat. Hugo also has great side and back bags. I always keep an umbrella in the back pack plus a folding cane so that I can use the cane when I go on the airplane because the airlines put Hugo in the cargo hold. Also, when you go thru the checker, security will take Hugo thru while you have to go thru walking - so I've found the folding cane helpful in those instances. There are some benefits to being handicap - at the airlines the lines are shorter. In the front of the back pack are several compartments for pens, small pads and the such. Other models I looked at charged extra for the back pack (bag). I have also used Hugo to carry heavy boxes when I go to the post office. Larger boxes fit right across the handles and you can still use the handles. Hugo also has helped carry things out to curbside for trash pickup, carry the laundry basket and all kinds of uses. Hugo is a great helper. Hope you enjoy. Candy K. - Original Message - From: Kevin Wolfthal To: [EMAIL PROTECTED];tmic-list@eskimo.com Sent: 4/14/2007 11:28:00 PM Subject: Re: [TMIC] thanks for rollator suggestions! Hi Candy, I'm glad! Is it easy to fold up if you take it in a car? Thanks! Kevin Candis Kalley wrote: I have the Hugo and LOVE it. I think you will be very happy with it. Candy K. [Original Message] From: Kevin Wolfthal [EMAIL PROTECTED] To: Tmic-list@eskimo.com Date: 4/14/2007 10:57:26 PM Subject: [TMIC] thanks for rollator suggestions! Thanks to everyone who replied re: rollators. I am having second thoughts about the 'Dannie', because as someone suggested, the reverse brakes might be hard on my already painful hands. Thank you to whoever brought that to my attention. (I'm sorry I can't thank everyone individually, typing with one finger
Re: [TMIC] thanks for rollator suggestions!
Heather, Actually, I'm more confused than before, LOL. How do you engage the parking brake? Isn't it with grips on the handles? Kevin Heather Pieter wrote: Oh Dear, I guess I have mislead you Kevin. I do not have 'hand brakes'. I guess mine are just parking brakes. I hope this had cleared up my information to you. Heather in Calgary - Original Message - *From:* Butcher, Bernie [SFS] mailto:[EMAIL PROTECTED] *To:* Kevin Wolfthal mailto:[EMAIL PROTECTED] ; Heather Pieter mailto:[EMAIL PROTECTED] ; tmic-list@eskimo.com mailto:tmic-list@eskimo.com *Sent:* Monday, April 16, 2007 6:03 AM *Subject:* RE: [TMIC] thanks for rollator suggestions! My rollator has individual brakes upon squeezing, the problem is, when I sit (on a chair) my rollator rollates away from me. no parking brake. It would also be nice to have a parking brake so I could use the rollator like a regular walker when I want to. */BERNARD BUTCHER/* *From:* Kevin Wolfthal [mailto:[EMAIL PROTECTED] *Sent:* Sunday, April 15, 2007 6:35 PM *To:* Heather Pieter; tmic-list@eskimo.com mailto:tmic-list@eskimo.com *Subject:* Re: [TMIC] thanks for rollator suggestions! Heather, I wish that I would be able to engage both brakes with one hand, so I may have to re-think the Hugo. I'm pretty sure there are such rollators. I'm glad yours has helped you and your Mom. Take care, Kevin Heather Pieter wrote: Kevin, My walker is not called a Hugo, can't remember the name right now but looks much like the Hugo. My brakes can be engaged one brake at a time. So you can hook your cane onto the handle if need be and do one brake at a time. My mother with diabetic neuropathy uses her walker 'all the time' in her home and out. She just does not walk without it at all. My sister with MS uses hers when need be and I use mine when shopping alone or going for a walk. I don't need mine in the house just yet but perhaps in a few years I might. Hope you enjoy yours. Heather in Calgary - Original Message - *From:* Kevin Wolfthal mailto:[EMAIL PROTECTED] *To:* [EMAIL PROTECTED] mailto:[EMAIL PROTECTED] ; Tmic-list@eskimo.com mailto:Tmic-list@eskimo.com *Sent:* Sunday, April 15, 2007 3:01 AM *Subject:* Re: [TMIC] thanks for rollator suggestions! Hi again, One more question, can the brakes be operated with either hand, or do you have to press them both together. I may use it sometimes with a cane in one hand. Thanks, Kevin Candis Kalley wrote: I think so. I can lift at max 10# or so and I lift my Hugo into my SUV. On Hugo, you lift the seat up and there is a strap that you pull and the Hugo folds right up. I usually have to study myself against the back of the car to lift but like I said I am limited on my lifting. I live by myself so I'm very in independant and manage just fine. The only times I've had problems is when someone tries to help. It throws my rhythm off of lifting and turning to get Hugo into the car. You will always have a seat available with Hugo plus the added support to walk and carry things. I have carried a whole car load of groceries on Hugo. 2 bags on each handle and several on the seat. Hugo also has great side and back bags. I always keep an umbrella in the back pack plus a folding cane so that I can use the cane when I go on the airplane because the airlines put Hugo in the cargo hold. Also, when you go thru the checker, security will take Hugo thru while you have to go thru walking - so I've found the folding cane helpful in those instances. There are some benefits to being handicap - at the airlines the lines are shorter. In the front of the back pack are several compartments for pens, small pads and the such. Other models I looked at charged extra for the back pack (bag). I have also used Hugo to carry heavy boxes when I go to the post office. Larger boxes fit right across the handles and you can still use the handles. Hugo also has helped carry things out to curbside for trash pickup, carry the laundry basket and all kinds of uses. Hugo is a great helper. Hope you enjoy. Candy K. - Original Message - *From:* Kevin Wolfthal mailto:[EMAIL PROTECTED] *To: [EMAIL PROTECTED
Re: [TMIC] thanks for rollator suggestions!
Gunny, Thanks for the suggestion. Kevin Gunny wrote: Kevin: Your feet are not supposed to be pointed straight out when you walk anyway. They should be from a 5 to 15 degree outward point from the ankle. Try to train yourself to walk this way and your joints wont pay for it. Only models walk with thier feet straight out, and that's for runway showings, plus, they put one foot in front of the other, directly in front which is not correct, just for show. Your ankles give out because your Peroneal muscle is weak. This muscle is located in front of your Gastrox, directly behind the Tibia, which is the shin bone. The Peroneal muscle is the one that locks the ankle in place. There is an exercise to strengthen that muscle but you need one of the rubber bands I use to accomplish that. It's a simple exercise and it works. I can jump in the air, not high mind you, and come down landing on the outside of my weak foot, the right one, and not break bones or unlock the ankle. Thinks about it. Gunny -Original Message- From: Kevin Wolfthal Sent: Apr 15, 2007 6:30 PM To: [EMAIL PROTECTED], Tmic-list@eskimo.com Subject: Re: [TMIC] thanks for rollator suggestions! Candis wrote: Kevin, I'm not sure why you would want to use a cane with the Hugo. Candy, I can explain this. I have found that even when I walk with a shopping cart, my feet tend to hit the back wheels of the cart. This is because I walk with my feet turned out because of my poor balance and my ankles tendency to give out. It is my way of compensating for the bad wiring in my spine that TM has caused. So by holding a shopping cart with my left hand, and a cane with my right hand, my feet don't bang into the back wheels. Now, I have been told by a neurologist that if I continue to walk with my feet turned out, I will wear out my knees and hips prematurely, but what is my alternative, walking with my feet straight, losing my balance and falling down. Maybe the rollator will allow me to walk with my feet straight and not use the cane, and not worry about falling. I have had years of physical therapy, but my ankles still want to 'give out'. So we all compensate in our own ways I guess. Take care, Kevin Candis Kalley wrote: Kevin and Nataline Plus Anyone else looking at the Hugo or rollator I love the Hugo. Unless you need it delivered, you will find better prices at Walmart Super Store or Sam's club - $110 to $115. I have used my Hugo to walk around in the yard. The larger wheels allow this. There are times that I have had to lift it to get out of a big hole covered by grass but other wise it is very handy. I keep my Hugo in my SUV so that it is always on the outside of the house. I have 3 steps into my house and as yet have not had a ramp installed and while I probably could lift it up those 3 steps I try not to take too many risks. Inside my house, I use 3 rolling office chairs. I am able to take several steps - at most 10 feet - unaided but I really have to concentrate on where I am going and take every brain cell to accomplish this. I found this out the hard way - no multi tasking in thinking and concentrating because I fell and did something to my little toe. It then took another 3 falls to figure out that the pain was making my legs give out. This wiring in the spine is crazy! After 16 months still learning what is what and still there are differences day by day. Anyway, back to the Hugo and rolling office chairs. Other than the brakes, I find the rolling office chairs easier in the house because the handles on the Hugo wouldn't allow me to get close to cabinets and such. Since I'm short - 5'1 - I have short arms and the Hugo in the house made it even more difficult to try to cook and work at cabinets. At one time I kept a regular rolling 4 wheel walker in the house and the Hugo in the SUV. Having the same difficulties, and having a friend of a friend worse off financially, I gave the 4 wheel walker to her. After my fall, I decided that I did need something in the house to help carry and sit so I started using my rolling office chair and that's when I found that they work in the house. I have 3 rolling office chairs. They are narrower than the Hugo and they make tighter turns. Therefore, I find the rolling office chair better in the house. With the rolling office chairs, I sit higher and can do a little better with regular cabinet heights and get closer. I also use the rolling office chairs just like my Hugo - carry things on the seat and push the office chiar from the back support which I have set so that it doesn't give. I also use the rolling
Re: [TMIC] thanks for rollator suggestions!
Hi Candy, I'm glad! Is it easy to fold up if you take it in a car? Thanks! Kevin Candis Kalley wrote: I have the Hugo and LOVE it. I think you will be very happy with it. Candy K. [Original Message] From: Kevin Wolfthal [EMAIL PROTECTED] To: [EMAIL PROTECTED] Date: 4/14/2007 10:57:26 PM Subject: [TMIC] thanks for rollator suggestions! Thanks to everyone who replied re: rollators. I am having second thoughts about the 'Dannie', because as someone suggested, the reverse brakes might be hard on my already painful hands. Thank you to whoever brought that to my attention. (I'm sorry I can't thank everyone individually, typing with one finger now). I like the looks of the Hugo, the seat looks supportive, and the price isn't bad. I might just order it and take my chances. Thanks again! Kevin
Re: [TMIC] thanks for rollator suggestions!
Hi Kevin, All your emails about a rollator have me thinking of getting one. I do not go many places anymore, just stay around home. And, I do have problems getting around at home too. I found a video of the Hugo at the link below. It does fold and looks real nice. I am glad you brought up the question of the Hugo as I guess I should give one a try. Natalie http://www.hugoanywhere.com/
