Mary Ann - I am so glad you are aware of the TM camp program. I can see you have a beautiful and wonderful daughter. You have so many reasons to be proud of you and yourself. You have brought up a well adjusted girl.
Patti On Wed, Jan 18, 2012 at 11:24 AM, Susan Kleinz <skle...@cox.net> wrote: > patti, > mary ann, > > may i just say DITTO, > exactly what is in my heart > > susan > phx az > > On Jan 18, 2012, at 9:59 AM, Pat Cooley wrote: > >> Mary Ann my heart is breaking readdiing yoour daughter's couurageous >> battle with TM. I wish there was something I could do or say to make >> it all better, especially since I have 2 granddaughters ages 9 & 13. >> I don't know how I would handle iand t if they were affected with TM. >> The thing I can do is put you in touch with a TM wesite that may help >> you and your daughter. The TM website is www.myelitis.org has a lot >> of information. The website give information about summer camp for >> children with TM. It is free all you have to do it get to the camp >> located in NC. It is a week of fun and activities for kids, some in >> wheelchairs and others in walkers, etc. The families are included >> also at no cost to you. This year it is being held in August. Their >> website is www.thecenterforcourageouskids.org/camp. If you cannot >> located it, go the the www.myelitis.org websitie. It will certainly >> be good for your daughter to interact with all the kids and make >> friendships that may last a lifetime. >> >> Patti in Wisconsin >> >> On Tue, Jan 17, 2012 at 6:43 PM, Janice Nichols <jan...@centurytel.net> >> wrote: >>> >>> >>> You and your child absolutely break my heart. At 60 years of age I >>> have adjusted, mostly, to having TM. I can not imagine my child of 7 >>> months contracting this disease. Your obvious >>> strength and love must be the most important thing you have given her. >>> Have you been able to have her contact, through websites, other children >>> that have TM? Even as an adult it >>> was very important to me to talk to other people with TM. We feel so >>> isolated with a disease this rare. If she could email other kids to have >>> communication with TM’ers, it may help her. >>> >>> Your sentence about what TM did NOT take away from us really hit me hard. >>> What a wonderful outlook, and one many of us do not see. Please stay >>> in contact with us and let us know >>> how your daughter is doing – you too. >>> >>> From: Mary Anne Egan >>> Sent: Tuesday, January 17, 2012 1:22 PM >>> To: Robert Pall >>> Cc: subers...@msn.com ; tmic-list@eskimo.com >>> Subject: Re: [TMIC] Is it really so important to know? >>> >>> >>> I don't normally chime in...I am not an adult living with TM or the >>> residual affects...I am the parent of a child who contracted TM at seven >>> months...as such I too would love to know what caused it. Mostly because if >>> there is a genetic component or condition which attributed to this >>> outcome....it would be in the hopes of preventing it from happening to any >>> of my other children or anyone's children for that matter (adults as well). >>> Ideally for me finding why this happened to her is a separate and less >>> concerning point....I could easily say this is a case of bad luck...but then >>> I would also have to say that bad luck is all around me...my father died >>> three months before my daughter was paralyzed..... my daughter proceeded to >>> be in and out of the hospital choking and unable to breathe, not once but >>> twice after onset...as a young child she could not tell us anything...we >>> proceeded to go in and out all of the next couple of years with respirators >>> and vents, etc...over the course of her life (now 9), she goes to a public >>> school and has a "normal" life....so for me it is ok...for her not so >>> much...she is dynamic and determined but she is also sad and lonely...she >>> does not have play dates, no one calls, she goes to parties as long as they >>> are accessible (which is not always a consideration, understandably >>> so)...she can not dress herself...she can ot get out of bed by herself...she >>> can not dress the way she wants, she has a one to one aid, all day, no peer >>> to peer privacy...she has to use a computer, go to the nurse to be cathed, >>> can't really participate in gym or recess...she has to be pulled from class >>> for PT and OT, she always needs modifications...she has the right to want to >>> know why...but she never asks....you know why....because I tell her...you >>> are one of the lucky ones. There are people who have died from TM, people >>> who cant talk, cant feed themselves, cant breathe on their own....yes it >>> easy for me to say but it is true...she is one of the lucky ones and quite >>> frankly so am I...in all that TM brings it is essential to remember what it >>> did not take away...finding out why or how is not the information my child >>> needs. On her worst day she knows it is still here with me and I am >>> grateful. >>> >>> >>> >>> On Tue, Jan 17, 2012 at 2:05 PM, Robert Pall <robthe...@aol.com> wrote: >>>> >>>> >>>> I understand the desire to know and understand what caused us to >>>> get TM. However the fact is that no matter how much research one does they >>>> will not find an answer because one does not exist at this time. I believe >>>> we were just unlucky and therefore I will not waste my time looking into >>>> the >>>> cause.....but I will spend much time looking for the right medications that >>>> can relieve my suffering. Perhaps someday the medical community will >>>> provide >>>> us with the answer....until then I will do the best I can to fight this >>>> condition and pray for a cure (especially for the younger people). >>>> All the best! >>>> Rob in New Jersey >>>> >>>> >>>> -----Original Message----- >>>> From: PAMELA S <subers...@msn.com> >>>> To: jannic <jan...@centurytel.net>; celrods <celr...@aol.com>; robthecfo >>>> <robthe...@aol.com>; TMC Group <tmic-list@eskimo.com> >>>> Sent: Tue, Jan 17, 2012 1:52 pm >>>> Subject: RE: [TMIC] Is it really so important to know? >>>> >>>> Hello all; I agree with Celrod on this. I would like to know what >>>> causes things because of the reoccurance of symptoms after recovery for a >>>> while. I would like to prevent them. I also notice a tendancy to >>>> autoimmune type problems in the family tree. But, my only concern with >>>> cause is prevention of further problems because I do like what I do. >>>> Celrod, I've had the same problem with word finding and written >>>> communication during acute episodes. Neurologists will claim I'm >>>> depressed. >>>> But, the only time I feel depressed is when I can't work due to this >>>> stuff. >>>> When I'm working I feel great. And, it usually takes quite a bit of pain >>>> and prolonged periods of inactivity to get me down. So, I really do >>>> believe >>>> this is the cause of the depression, not the other way around. I am >>>> beginning that "greens" or "hunter gatherer diet". It's not what I used to >>>> call hunter gatherer diet when we talked about diabetes prevention in >>>> native >>>> americans, but that was a long time ago, and it'll do. Pam >>>> >>>> ________________________________ >>>> From: jan...@centurytel.net >>>> To: celr...@aol.com; robthe...@aol.com; tmic-list@eskimo.com >>>> Subject: Re: [TMIC] Is it really so important to know? >>>> Date: Sun, 15 Jan 2012 22:56:07 -0600 >>>> >>>> Jane, >>>> This is really new to me - the fact that you have had so many >>>> episodes/attacks of TM, and then you are back to normal. I don’t know >>>> anything about your other disease, but I am sure >>>> you have checked it out. Hope someone will pop up here to talk to you >>>> about it and can empathize. >>>> Janice >>>> >>>> From: celr...@aol.com >>>> Sent: Sunday, January 15, 2012 3:19 PM >>>> To: robthe...@aol.com ; tmic-list@eskimo.com >>>> Subject: Re: [TMIC] Is it really so important to know? >>>> >>>> I was told I had TM on April 26, 1998 although I had been feeling numb >>>> and tingly in my leg and trunk since October. It was a slow onset. It is >>>> almost 14 years! Don't know why my immune system attacked me, but it did. >>>> I >>>> have had 6 episodes where I felt numb and tingly and the doctor put me back >>>> on steroids and it went away. Personally I think stress was a big factor >>>> in >>>> my attacks. I also have another immune disease-bulbous pempgoid. Now I am >>>> starting to ramble. It helps to talk to someone who knows what I am talking >>>> about and it did initially involve my brain because I could not think of >>>> the >>>> right words or write them. That has returned slowly. >>>> >>>> Jane/Splendora Tx >>>> >>>> In a message dated 1/15/2012 11:12:28 A.M. Central Standard Time, >>>> robthe...@aol.com writes: >>>> >>>> I have had TM for more than 14 years and I have gone to the best Doctors >>>> (Dr. Kerr). In this group as well as some of the other facebook groups >>>> there >>>> seems to be a preoccupation with trying to find the cause that brought TM >>>> into our lives. I certainly understand the importance of medical >>>> researchers >>>> looking for these answers but I don't understand why it is so important for >>>> us to have a definitive answer as to why we were unlucky enough to contact >>>> TM. >>>> I am a layman when it comes to our condition. I see my neuro twice a >>>> year basically for pain management. I do not waste my time trying to answer >>>> a question for which there is no answer. >>>> We were just unlucky enough to have hit the million to one >>>> lottery....why us..was it stress, was it a flu shot, was it just a common >>>> cold that our immune system attacked improperly???? >>>> God only knows ....and try as we might how are we supposed to figure out >>>> the cause when none of our doctors have been able to? >>>> >>>> For me the most important things that a support group like ours can >>>> supply is the medications that have been sucessful, and or the doctors that >>>> we have confidence in. I like all of you pray for a cure....but at my age >>>> (64) I pray it does not get worse and that new medications might make me >>>> feel better. >>>> >>>> Ok I am starting to ramble.... >>>> >>>> All the best to all! >>>> Rob in New Jersey >>> >>> >>> >>> >>> >>> -- >>> Mary Anne Egan, also NJ >>> >> >
