Re: [TMIC] from Gary
Naomi I have TM for seventeen years and the only time I saw a Neurologist was at Onset of TM and when 2 years after , I asked for a referal. which did no good.Since 1992 I have not seen a Neurologist and I honestly think that there would not have been a lot that they could have done for me. I have been paralysed from the waist down, but have gradually regained feelings in most of my lower body, except from the above ankle area to toes, but that area iis also getting better. Unfortunately I am still unable to walk. even with doing one and half hr. sessions of excercise and swimming 2 times a week. I permanently use a wheelchair and this is not for the want of trying to walk Like someone else said I am resigned to living with TM by now and I dont think that any cure of Stem Cell treatment or any other, will be on the agends in my lifetime. I sincerely hope that it will be possible some day, especially for the little ones. Hope this will also help others. Regards Ann - Original Message - From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Tuesday, June 26, 2007 5:15 PM Subject: Re: [TMIC] from Gary Gary, I am pretty much in the same boat as you. I was diagnosed with TM July 2005. At that time, I had spinal taps and plasmapheresis. I stayed in the hospital for four months for rehabilitation. Since I've left the hospital, I have not seen a neurologist. I do not have a regular neurologist to go to. When I go to my primary care physician, I will ask her to refer me to one, although I don't know what good he'll be at this point. July 2 is my two year anniversary. The only doctors I see on a regular basis is, my primary care physician and my Physical Medicine and Rehabilitation doctor. I have a Baclofen pump and my rehab doctor maintains that. Any other complaints, I see my primary care physician. I had a post on this message board not to long ago about the need for a neurologist. I read that a lot of people go to them, but I haven't seen one in the past two years. I don't know if it's necessary or not. Naomi C-4 quad, incomplete, since July 2, 2005
Re: [TMIC] Doug Kerr
Hi Gunny How are you doing/ I just heard that Dog is coming to England next October 13th.. You can be sure that I will be there as well. I am in touch with the London TM group. Sally Lew. So am looking forward to seeing Doug again. Hope you are well Best wishes Ann - Original Message - From: Gunny [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Monday, April 02, 2007 2:52 AM Subject: [TMIC] Doug Kerr Doug will be doing a Medical Seminar here in Youngstown on Oct. 6th 2007. Anyone in the area is welcome to come, like Cleveland, Akron, Canton and so on. Let me know ahead of time so I can get the particulars to you. Gunny PeoplePC Online A better way to Internet http://www.peoplepc.com
Re: [TMIC] Mom
Hi Gunny I am so sorry to hear about your Mom, I well remember you having to help her when she fell, you must be so sad, its hard to see her unwell and not be able to do anything for her, I lost my Mom in 1999, it was very sudden, I am alway thankful that she died in her sleep and was able to look after herself till the last, she was 84yrs. so I am thinking about you and will say a prayer for both of you to help you thru the next while. Look after yourself, I often think about our meeting in Seattle and Baltimore Love Ann - Original Message - From: Gunny [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Monday, January 22, 2007 4:10 AM Subject: [TMIC] Mom Hey People; For those of you that know me, you may remember the story of when my Mom feel and I had to pick her up. Well, I can't pick her up now. Mom's been in a Nursing Home since last April. She had a Fistula put in her arm for Dyalisis but it kept clotting so she had surgery to repair that last Thursady. Guess what, more clotong so she decided to quit. She now has at the most maybe three days let. She went from talking yesterday to not responding today. Eurmic poison is taking over. It's for the nest. This lady has endured a lot of shit in her life so now it's alomst over. I'm gonna miss her. I'll te ya know when she's gone. Oh. one thing she did ask me to do was to spread some of her ashes over 586 N. Howard St., Akron Ohio. That's the house she and I were born in, so, that's what I'm gonna do. I'll bark at you all in a couple days. Gunny PeoplePC Online A better way to Internet http://www.peoplepc.com
Re: [TMIC] (no subject)
Well If you don't know Gunny, how are the rest of us suposed to know lol. How are you these days anyway, haven't seen you post recently. I meant to wrie you after I saw in the MS magazine here in Ireland that Ronan Tynan gave a fairly large donantion to Doug Kerr. Hope you are keeping well, Take care regards Ann - Original Message - From: [EMAIL PROTECTED] To: Tmic-list@eskimo.com Sent: Tuesday, October 10, 2006 9:02 PM Subject: [TMIC] (no subject) How the hell do you unsubscribe from this damn list?
Re: [TMIC] today's feat
Hi Deb I have a lightweight manual wheelchair which I slide across my lap onto the passenger seat and then lay it down. I am curretnly going to change my car and I am hoping to get a wheelchair box, put on the top of car, which would make it easier for me. Also I'm looking into getting powered wheels to put on my chair for when I go out for long journeys/ uphills etc. These seem to be quite heavy (the powered wheels) By a power seat do you mean a swivel seat, this is what we call it hear, it swivels out side the car and you transfer onto it. Then swivel back in th car The car I have now is a bit too high up and I have a job to get onto the seat safely, so I am looking for a regular car again. I also wondered what a chair topper is ?? regards Ann - Original Message - From: Deb Casey To: [EMAIL PROTECTED] ; tmic-list@eskimo.com Sent: Saturday, October 07, 2006 5:56 PM Subject: Re: [TMIC] today's feat Hi Ann in Ireland, and everyone else on the list. I also drive with hand controls. I have a couple of questions for you...Ann, you mentioned that you don't have any control with your feet. I don't have normal movement with my left and hardly any in my right leg. My lesions are from T8-T10. Right now I'm driving a van with a lift and a power seat that I transfer into. This was a godsend for me 2 years ago. I have recurring TM and each episode has left me with more disability, but I am getting stronger and feel like I'm ready for a regular sedan with a chairtopper. I'm getting alot of opposition from my family but I've always been independent and it drives me nuts to be driving this huge vehicle with just me.Also, do you have a powerchair? or do you have a manual wheelchair? If there are any other chair people who are driving I'd love to get some feedback. Right now I'm in a breezy chair and if I get a car with a chairtopper i'll have to invest in a lighter chair. Another concern is the resale of the van. adapting it was quite expensive and i was wondering if anyone has recently sold an adapted van and how you made out.I've been in the background for awhile just reading all of your mail. Your experiences and advice are invaluable. I'm always overwhelmed by how generous you all are with your experiences and knowledge.I love you all!Deb C. in MI. --- On Sun 10/01, Ann Moran [EMAIL PROTECTED] wrote: From: Ann Moran [mailto: [EMAIL PROTECTED]To: [EMAIL PROTECTED]Cc: tmic-list@eskimo.comDate: Sun, 1 Oct 2006 19:25:47 +0100Subject: Re: [TMIC] today's feat Hi Altonhave you considered driving with hand controls.( I have no control with my feet at all.) I do that and I also drove a stick shift using hand controls, now I have advanced to an automatic, makes life a little bit easier. Plus side is that I can still be independant.regards Ann in Ireland where it is wet and windy. - Original Message - From: Alton Ryder To: TM list Sent: Friday, September 29, 2006 1:48 AM Subject: Fwd: [TMIC] today's featBegin forwarded message: From: Alton Ryder [EMAIL PROTECTED] Date: September 28, 2006 8:47:20 PM EDT To: Carol E [EMAIL PROTECTED] Subject: Re: [TMIC] today's feat I can not use my right foot for the brake I lost my kinethetic senses in the right leg. If I pick my foot up off the gas pedal, I have no idea where it will come down. After driving a stick shift since the early '50's we had to trade in our Subaru for the same model with a slush pot. Bummer! For the next 8 years I drove a lot - even with an AFO on the ankle - keeping my heel down and lifting my toe. Braking was with the left foot.Now I'm grounded with two blown shoulders, once again begging for rides.Alton No banners. No pop-ups. No kidding.Make My Way your home on the Web - http://www.myway.com
Re: [TMIC] today's feat
Hi Alton have you considered driving with hand controls.( I have no control with my feet at all.) I do that and I also drove a stick shift using hand controls, now I have advanced to an automatic, makes life a little bit easier. Plus side is that I can still be independant. regards Ann in Ireland where it is wet and windy. - Original Message - From: Alton Ryder To: TM list Sent: Friday, September 29, 2006 1:48 AM Subject: Fwd: [TMIC] today's feat Begin forwarded message: From: Alton Ryder [EMAIL PROTECTED] Date: September 28, 2006 8:47:20 PM EDT To: Carol E [EMAIL PROTECTED] Subject: Re: [TMIC] today's feat I can not use my right foot for the brake I lost my kinethetic senses in the right leg. If I pick my foot up off the gas pedal, I have no idea where it will come down. After driving a stick shift since the early '50's we had to trade in our Subaru for the same model with a slush pot. Bummer! For the next 8 years I drove a lot - even with an AFO on the ankle - keeping my heel down and lifting my toe. Braking was with the left foot. Now I'm grounded with two blown shoulders, once again begging for rides. Alton
[TMIC] info request
I have been approached by a TM member who does not have internet, asking for information on Cell Cept and TM , I have been looking on line and can only find info regarding cell cept and Lupus. does anyone have any ideas on this please, or can point me in the right direction Thanks Ann in Ireland
Re: [TMIC] Dr. Kerr
Yes I also heard that Dr. Kerr was on World News here in Ireland too, as it was on late I did not get to see it, its just great that he was on and being listened world wide., but am going to try and find it thru my computer. I am just starting to read mail, since my vacation, just back last Sunday. Hope you are all well# regards Ann in Ireland - Original Message - From: Mary W [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Wednesday, June 21, 2006 1:56 AM Subject: [TMIC] Dr. Kerr I just saw Dr. Kerr on The CBS Evening News regarding his research re embryonic stem cells. I'm so glad he is getting national recognition. Good for him..good for us! Mary W Grass Valley Ca
[TMIC] Symposium Rally
I have just received info on a Working 2 Walk Symposium Rally to be held in Washington DC on April 30 - May 2, 2006 by The Christopher Reeve Foundation and Unite 2 Fight Paralysis. Someone in that area may be interested on finding out more. I get a newsletter from them, about once a month. regards Ann Ireland
[TMIC] question OT
Hi Everybody I haven't posted for a while, but I do read mail as often as I can, to keep up to date on all that is happening My Question is, I have contracted dermatitis all on the palm of my hands especially between my thumb and finger, I have it for three months now and it did heal for about a week and then again the itchy spots came back, I have now an infection in them, I have been given Dermavate from my GP and last week some antibiotics. My hands are very sore and the area gets red hot, you can just imagine how they feel when I have to transfer from my wheelchair, to car, bed. toilet etc etc. I have also tried Pure Aloe Vera, E45 and other creams to soften my hands, the skin gets brittle, breaks off when dead, and splits Have any of you had this or can offer any sugestions on how I can treat it. I usually use fingerless gloves when I'm outside, but still feel sure that I have caught some thing from the wheels of my chair, my doctor thinks different, its soap or cleaning fluid etc. I have not been able to see a Dermatologist as there is about a 2 month waiiting list for Private Dr. (I did not get my name down at first as I was hoping it would go away ) or a 2 year wait for a free Health care Dr. I'd appreciate any suggestions, I know what a mine of information comes from this list Many Thanks Love Ann in Ireland
Re: RE: [TMIC] loss of bowel control
Hey Frank I'VE TM 16yrs come May 2006 and still hoping to once again be able to dance, which was my favourite passtime once upon a time never give up I say !! - Original Message - From: [EMAIL PROTECTED] To: C E [EMAIL PROTECTED]; [EMAIL PROTECTED]; [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Monday, January 23, 2006 2:17 PM Subject: Re: RE: [TMIC] loss of bowel control Carol, I've had TM since 2000 And am still unable to dance either fast or slow. The loss of dancing is one of my greatest. take care F
