Mary Anne, I have learned the same lessons you have concerning friends. Please keep us updated and feel free to “chime” in anytime. janice
From: Mary Anne Egan Sent: Wednesday, January 18, 2012 11:53 AM To: Pat Cooley Cc: tmic-list Subject: Re: [TMIC] Is it really so important to know? Thanks that was not meant to make anyone upset or sad it ws simply intended to provide perspective...she is a great child and this is her normal. We did go to the camp in NC and we are applying for the one in Kentucky this year. She has a good life, she is on a local swim team, she does horse back riding and she has nice friends, it just makes things more complicated for her and I get that it can be sad and quite frankly maddening. I know that the kids like her and accept her and help her without being asked, but little things get in the way, their houses are not accessible or the parents are uncomfortable and don't know how to approach their feelings or concerns so she feels more "disabled" in settings like that but she is good and full of energy and a happy little girl. Ultimately she would love not to be the "only child" in our school in a wheelchair but at the same time she is impacting a lot of people's (kids and adults), understanding of what it means to be disabled, she is still just a kid. That is a powerful role for a child, one she handles well for the most part. I will say on another note, one benefit through all of this is that we all have come to know real friends, real caring people and we don't tend to get caught up with less than genuine people because they can not be bothered, for that I am also grateful. On Wed, Jan 18, 2012 at 11:59 AM, Pat Cooley <[email protected]> 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 <[email protected]> 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: [email protected] ; [email protected] > 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 <[email protected]> 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 <[email protected]> >> To: jannic <[email protected]>; celrods <[email protected]>; robthecfo <[email protected]>; TMC Group <[email protected]> >> 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: [email protected] >> To: [email protected]; [email protected]; [email protected] >> 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: [email protected] >> Sent: Sunday, January 15, 2012 3:19 PM >> To: [email protected] ; [email protected] >> 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, [email protected] 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 > --
