Fw: [TMIC] Misunderstood
my care giver was a nurses aide for 21 years ...so she reads all my e mail from the tm web site and has read the about tm itself ...she pretty well knows whwat i going thru and knows i'm about a good as i going to get... i'm very thankful for her careing for me...i have to have a catherter in me the rest of my life because my blatter doesn't operate any more because of tm - Original Message - From: Jenna To: Butcher, Bernard G (NY80) ; tmic-list@eskimo.com Sent: Wednesday, April 16, 2008 10:21 AM Subject: Re: [TMIC] Misunderstood Bernie, Keep your spirits up!! We care about you and how you are doing. Jenna - Original Message From: Butcher, Bernard G (NY80) [EMAIL PROTECTED] To: Robert Pall [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Wednesday, April 16, 2008 10:12:19 AM Subject: RE: [TMIC] Misunderstood Hi Rob - I can relate. My wife and especially my son - seem to not care leave obstacles in my way (I walk with walker only) - I think they do care, but are equally angry and confused about this as I am - I got promoted (or demoted) from TM to MS in February '08. before this all happened, I did Everything - mowed, shoveled snow, fixed cars and appliances, painted patched, and played golf (badly), now none of those. BERNARD BUTCHER From: Robert Pall [mailto:[EMAIL PROTECTED] Sent: Wednesday, April 16, 2008 8:51 AM To: tmic-list@eskimo.com Subject: [TMIC] Misunderstood Thanks to all of the group who responded to my question! Other than a couple of members who stated that their spouses try their best to understand, including going to symposiums, reading from the list etc., most of the others seem to share my frustrations making our loved ones understand what we go thru 24/7. Many members have gotten divorced over our condition either because there spouses did not understand or did not care enough. This to me is both sad and frustrating! I have tried my best to explain to my wife how difficult my daily life is. She believes that giving sympathy will make me worse ands she chooses to treat me normally hoping I will act normally…I usually come close to her wishes…however there are times when I just need a hug, some sympathy and most importantly some understanding. I know this will not happen…therefore I have to come to terms with how I personally will deal with this. I know I want to stop working, move someplace warm and spend the rest of my life answering to only myself…this may come to pass…however deep in my mind I fear being alone. I fear falling and no one will be there to help pick me up! This is what I must come to term with. As an aside my wife told me that when I started up the New Jersey support group and started talking to members I tended to feel worse about myself…I think this is bull but how do you explain to someone who can't understandand won't even try! Thanks for letting me vent again! Rob In New Jersey Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
[TMIC] Q Therapeutics - Q Therapeutics Announces Series B Investment
http://www.qthera.com/index.php/news-events/q-therapeutics-announces-series-b-investment.html
[TMIC] Q Therapeutics - Stem Cell Therapy for Degenerative CNS Conditions
http://www.qthera.com/
Fw: [TMIC] Q Therapeutics - Stem Cell Therapy for Degenerative CNS Conditions
- Original Message - From: ROBERT DIEHL To: tmic Sent: Wednesday, April 09, 2008 11:57 AM Subject: [TMIC] Q Therapeutics - Stem Cell Therapy for Degenerative CNS Conditions http://www.qthera.com/
Fw: [TMIC] Q Therapeutics - Q Therapeutics Announces Series B Investment
- Original Message - From: ROBERT DIEHL To: tmic ; john ; mark ; jack ; kathy Sent: Wednesday, April 09, 2008 11:58 AM Subject: [TMIC] Q Therapeutics - Q Therapeutics Announces Series B Investment http://www.qthera.com/index.php/news-events/q-therapeutics-announces-series-b-investment.html
[TMIC] birthday
robert diehl birthday 4/21/32
[TMIC] stress TM GBS
march 31 ,04 my arms felt real heavy..saw the doctor that afternoon and he said he thought i was coming down with a virus...the next morning 4/1/04 i got a leg cramp in my left leg while still in bed ..had to phyicaly move my leg out of bed...got back in bed til time to get up..legs felt like they did'nt want to hold me up..my wife and i had breakfast and when i got up to get dressed i passes some urine and then new something was wrong...called the doctor and he said to get to the hospital right away..they did xray and spinal tap... by 7pm i was paralized from the waist down and i could;nt move my right arm...they started me on intervinus steorids and immagoglem... up to that time i was taking care of my wife who had alzheimers i had to give her her shots and her medication and help her get dressed and undressed and my 91 year old mother to get her to her appointments and her food shopping...also helping my neighbor and his wife get to there dodctor appoitments... the doctors felt the stress of doing all that had run my immune system down...iwas 71 when this all happened.they said i had TM GBS i had a relapse last summer was paralized from the waist down for a week..and back to bing able to walk with a cane and use a wheel chair for travel Bob Diehl From Eastern Pa.
[TMIC] TM GBM
i live in doylestown,pa...about 30 miles north of phila..in 04 i spent all of april in the hospital then my son put me on a plane to las vrgas nv. to live with my daughter.. out there i went thru 2 months of rehab at health south...they got me from the wheel chair to a walker then just the cane..came home middle of august...but last may 07 i went into depresson spent 12 days in the hospital outside of phila..my daughter flow in and when i was released her and i flew back to las vegas...i was supposed to stay with her for about a month...but things went bad for me..i started passing out...was in the hospital 6 days and health south 12 days...less than 2 wks i passed out again..spent 5 days in the hospital and a month in health south this time is when i was paralized from the waist down again...they had a hard time getting my blood pressue under control..but they finnaly found a medicane to take care of it..had to go thru the same thing wheel chair to walker...came home middle of october...been ok still go to rehab here three days a week and my doctor and rehab put me on a tens unit to help control the lower back pain...works good for merehab and my doctor are trying to get me listed as perment disabled... bob from pa
[TMIC] Tens Unit
my theropist and my dr. got me a TENS UNIT thru medicare and my secondary insurance..cost $799. did not cost me anything..web site for it is www.empi.com i has done wonders for me and my lower back pain..i can set the intensity of it to control the pain as needed..it is portable so i can so out with it on me...so far seems a lot better than the pain medicine i;m on..but it may not work as well for everyonei'm glad i have it though..
[TMIC] Merry Xmas Everyone
http://www.minibite.com/christmas/santashooked.htm
Re: [TMIC] parker video
sent website to ellen tv show so lets see what happens??? - Original Message - From: Carol To: robert diehl ; tmic-list@eskimo.com Sent: Sunday, October 07, 2007 8:51 PM Subject: Re: [TMIC] parker video Bob, You are so right. This is certainly worthy of being aired on national TV. Carol in Culver, IN - Original Message - From: robert diehl To: tmic-list@eskimo.com Sent: Sunday, October 07, 2007 4:29 PM Subject: [TMIC] parker video http://vids.myspace.com/index.cfm?fuseaction=vids..individualvideoid=19562912 wish one of the national talk shows would aire this video very human story
[TMIC] parker video
http://vids.myspace.com/index.cfm?fuseaction=vids.individualvideoid=19562912 wish one of the national talk shows would aire this video very human story
Re: [TMIC] Flu Shot
i got tm gb 4/04...been getting flu shot for many years before tm gb and still get them yet..my pcp told me to continue them because if i get the flu it will be harder on me because of the tm gb and because my inmune system is week also to fight the flu off Bob from Pa. - Original Message - From: Cossy Hough [EMAIL PROTECTED] To: Carol [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Saturday, October 06, 2007 5:19 PM Subject: Re: [TMIC] Flu Shot I get one every year. I got TM after having the flu in 2000. I haven't had any problems with the shot. Cossy --- Carol [EMAIL PROTECTED] wrote: Would like to hear from one and all regarding the controversy of whether to get a flu shot or not. Interested in knowing how many people plan on getting a flu shot this season. I know this is very controversial within the group. Neither one of my neurologist have told me NOT to get one, including Dr. Kerr. They both have said that it was safe. My primary care physician suggests I get it since I have heart disease and diabetes. Carol in Culver, IN Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. http://farechase.yahoo.com/
Re: [TMIC] Lyrica/Neurontin
my oringinal lesions in 2004 were on the lower part of my spinal colomnwhitch still are there on my recent MRI.my mid section has been numb and feels like i have a tight band around me..when my neurolist told me about TM starting on my neck area i asked him if i was starting with MS but he told me no at the present time...he said further MRI's will be done to see how it is doing. - Original Message - From: Kevin Wolfthal [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Monday, August 20, 2007 11:56 PM Subject: Re: [TMIC] Lyrica/Neurontin Hi Robert, Glad to hear the neurontin is helping you. I still don't know why my diagnosing doctor wouldn't put me on neurontin when I asked him about it. You mention that TM may be starting in your neck area. Where was the initial lesion? I thought that if new lesions form, the diagnosis changes. Anyone? Kevin robert diehl wrote: i was put on lycaria by my pcp but my neurolgist took me off of it becuse he said it not right for me. he put me on neurontin.. take 300mg..one in the morning and one at bed time...had not had any side effects frm it at all ...for me now i feel pain freejust was in the hospital for five days then taken to a rehab hosp..was therefor almost trhee weeks til they got me walking again...in the hosp they did a MRI from the top of my head to my butt..showed sigs of TM starting in my neck area..put me on steroids for four days...will have anther MRI done shortly BOB FROM PANOW LIVING IN LAS VEGAS WITH MY DAUGHTER - Original Message - *From:* [EMAIL PROTECTED] mailto:[EMAIL PROTECTED] *To:* tmic-list@eskimo.com mailto:tmic-list@eskimo.com *Sent:* Monday, August 20, 2007 8:52 PM *Subject:* [TMIC] Lyrica/Neurontin Hello Gang, After more than a year suffering through too much pain than my 5200mg/day Neurontin could handle, I have seen a new neurologist who has started me on Lyrica as a chance of getting my pain under control. She didn't want to increase my Neurontin, and I wasn't really interested in that either. She also helped me with better information about my Baclofen dosing and spasms, so that's working out much better. I've actually been getting a bit more sleep at night. I didn't really want to change anything around, as I was doing well on the Neurontin for 8 yrs. Well, that is until it just wasn't handling the pain. I was doing well without any bad side effects. I had some speech problems where I couldn't grasp my words for the entire time really, some weight gain, but not really anything else that was noticable or that I remember at the moment, lol. Heck, I've taken it for so long that I'm used to whatever state that I'm in. It takes someone on the outside to notice that I'm a bit odd or off. Can anyone out there tell me how long it took them to get over the really bad fatigue factor? So far I'm not noticing any other symptoms. I've taken for 4 days now, and am still on the same dosage of Neurontin. The doc gave me 50mg caps, and told me to take for a week before changing my regime with Neurontin. I am then to raise it and lower my Neurontin based on her instructions. Hugs to all, Barbara A Get a sneak peek of the all-new AOL.com http://discover.aol.com/memed/aolcom30tour/?ncid=AOLAOF0002000982.
Re: [TMIC] Lyrica/Neurontin
i was put on lycaria by my pcp but my neurolgist took me off of it becuse he said it not right for me. he put me on neurontin.. take 300mg..one in the morning and one at bed time...had not had any side effects frm it at all ...for me now i feel pain freejust was in the hospital for five days then taken to a rehab hosp..was therefor almost trhee weeks til they got me walking again...in the hosp they did a MRI from the top of my head to my butt..showed sigs of TM starting in my neck area..put me on steroids for four days...will have anther MRI done shortly BOB FROM PANOW LIVING IN LAS VEGAS WITH MY DAUGHTER - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, August 20, 2007 8:52 PM Subject: [TMIC] Lyrica/Neurontin Hello Gang, After more than a year suffering through too much pain than my 5200mg/day Neurontin could handle, I have seen a new neurologist who has started me on Lyrica as a chance of getting my pain under control. She didn't want to increase my Neurontin, and I wasn't really interested in that either. She also helped me with better information about my Baclofen dosing and spasms, so that's working out much better. I've actually been getting a bit more sleep at night. I didn't really want to change anything around, as I was doing well on the Neurontin for 8 yrs. Well, that is until it just wasn't handling the pain. I was doing well without any bad side effects. I had some speech problems where I couldn't grasp my words for the entire time really, some weight gain, but not really anything else that was noticable or that I remember at the moment, lol. Heck, I've taken it for so long that I'm used to whatever state that I'm in. It takes someone on the outside to notice that I'm a bit odd or off. Can anyone out there tell me how long it took them to get over the really bad fatigue factor? So far I'm not noticing any other symptoms. I've taken for 4 days now, and am still on the same dosage of Neurontin. The doc gave me 50mg caps, and told me to take for a week before changing my regime with Neurontin. I am then to raise it and lower my Neurontin based on her instructions. Hugs to all, Barbara A -- Get a sneak peek of the all-new AOL.com.
[TMIC] dr appt.and results
dr said my vitial signs were great this time and when he called back about my blood work he said the readings were the best they have been in a long long time.where he wanted them or lower. asked him if he thought the LOW DOSE Naltrexone had anything to do with it because it helps make the immune system stronger...been on it three months now...4.5 ml. take one a day at bed timehe said we'll see how the blood work is next time then he also gave me some samples of lycria for the pain...tried it for two weeks and gave up on it... didn't do anything for me...i'll just live with the pain then...i go to him every three months
[TMIC] low dose naltrexone
my name is robt. diehl Tm since 04/04 i'm74 yrs. old my dr. gave me a prep. for ldn 4.5 mg once daily at bed time been on it for a month now.. the compouding phyrmist that makes it for me said that it helps make the immune system stronger... he said that is a good thing for me... so far i seem to have better control of my body functions and my banding and back pain seem to be a little better prep is for 6 mo. so i'm willing to see what happens... i have no side effects from it so far at my age things may go a lot slower so time will tell have a good day everyone bob from pa.
[TMIC] lowdosenaltrexone
http://www.lowdosenaltrexone.org/#How_does_LDN_work_ this is a web site i found very interesting and reading about the studies that have been or are going on now seems to have a lot of positives in it everyone who answered my question about it ..THANK YOU answers seemed to be negative about its use seems strange to be such a differance in answers about LDN kind of leaves me in the dark about it now Bob from Pa.TM 04/04
[TMIC] low dose naltrexone
back in nova posting about low dose naltrexone was listed..i did some print outs about it and gave them to my dr...he was going to look into it...has anybody else done any research about the LDN as they call it?? has anybody else tried it to see if it helps??i go to my dr next week and am looking for any additional info to give him about anyone else using it BOB from PATM since 04/04. HAVE A GOOD DAY EVERYONE
Fw: [TMIC] Happy New Year
- Original Message - From: ROBERT DIEHL To: ROBERT DIEHL ; Tracey L. Black Sent: Monday, January 01, 2007 8:57 AM Subject: Re: [TMIC] Happy New Year - Original Message - From: ROBERT DIEHL To: Tracey L. Black Sent: Sunday, December 31, 2006 12:26 PM Subject: Re: [TMIC] Happy New Year I live in Doylestown,Pa. about 30 miles north of Phila. i'm 74 now and was in the hospital for a month then went thru rehab for two months..at the end of rehab i was out of the wheel chair and walk with a cane...i live alone now because my wife has alzheimers and is in a nursing home...i don't take any pain medicine for TM because of living alone..i lay down and rest a lot and that relieves the pain.am able to sleep all nite also. have a nice day and Thank You for the reply - Original Message - From: Tracey L. Black To: ROBERT DIEHL Sent: Sunday, December 31, 2006 10:49 AM Subject: RE: [TMIC] Happy New Year Bob: Where in PA are you from? My 13 year old daughter has TM and we are from near Gettysburg, PA From: ROBERT DIEHL [mailto:[EMAIL PROTECTED] Sent: Sunday, December 31, 2006 10:21 AM To: tmic Subject: [TMIC] Happy New Year HAVE A VERY HAPPY NEW YEAR EVERYONE Lets hope that the new year brings progress for treating TM Bob from Pa. TM since 4/04
[TMIC] Happy New Year
HAVE A VERY HAPPY NEW YEAR EVERYONE Lets hope that the new year brings progress for treating TM Bob from Pa. TM since 4/04
[TMIC] MERRY XMAS TO EVERYONE
http://www.ricker.us/snowglobe.swf Hope everyone has a very merry xmas
[TMIC] Yahoo! News Story - Paralyzed man moves computer cursor through thought - Yahoo! News
robert diehl ([EMAIL PROTECTED]) has sent you a news article. (Email address has not been verified.) Personal message: Interesting info. Paralyzed man moves computer cursor through thought - Yahoo! News http://news.yahoo.com/s/nm/20060712/sc_nm/science_brain_dc_2 Yahoo! News http://news.yahoo.com/
[TMIC] bone problems
i've had TM GB since april 2004 and i'm 73after reading about HEYJUDE and her broken bones... i guess i have a question about that..i know that as you grow older your bones change but do we have to be more careful about what we do and are our bones more brittle because of our medical problems...has anyone had bone problems because of TM and how were you told to handle it..my doctor hasn't told me anything about that... thank you one and all and a HAPPY NEW YEAR TO EVERYONE
[TMIC] leg spasms
my dr. put me on alprazolam 0.5mg...in fact i'm only taking a 1/2 of pill about 1/2 hour before bed time..has worked very well for me so far...my dr. said this is a nerve pill and he felt that it was my nerves causing the spasms...so far so good have a good day everyone
[TMIC] useful website
found this website ... www.baddteddy.com/disability/index.htm it my have some useful info for some of you have a great day everyone
[TMIC] leg spasms at night
whatdoes anyone take for leg spasms this happens to me at night when i go to bedthis doesn't happen every nite...but when it does i can't get to sleep until my legs settle done i've tried tylenol ...that seems to help a little bit
