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
