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Ann, Thank you for your reply. Believe me, I am very aware of watching for
depression with Jake, because if it was me I think I might be really
bummed. And sometimes he is bummed, but mostly he is not. Mostly he is
active and joking and laughing and just having a good ol time. If you read
some of the e-mails I have passed on to Christi you would see that Jake
isn't depressed, that's is why I don't want to give him meds for it. He is
actually tired a whole lot faster than someone who has their entire body
working. Phil explained great with the analogy of his V-8 engine and I am
going to show that to the Doc. You see they want Jake to play basketball
from his wheelchair and to lift weights and all that...well, he does do all
of that but not as long as his friends can and maybe not every day. And if
he plays b-ball for an hour then he has to lay down. And the Doc's keep
telling me that he shouldn't have to lay down....so therefore I go back and
forth between thinking Jake needs to rest after excertion, and thinking if
he worked harder he would be stronger. I just don't know Judi
----------
> From: Lindstrom, Ann (Ann) <Ann.Lindstrom(AT)octel.com>
> To: Doc <doc09(AT)fuse.net>; Judi(AT)fuse.net 'Johnnie DeGrand'
<jdegrand(AT)up.net>
> Cc: tmic-list(AT)eskimo.com
> Subject: RE: JAKE
> Date: Friday, June 12, 1998 11:38 AM
>
> Judi - Jake's fatique could be caused by both the TM and depression.
> There is a very big connection between the mind and body, and depression
> often occurs when the body has major problems. Also - Jake is having to
> adjust to some really major stuff here. Anyway, after more than 18
> months of myelitis fun, I also had to come to terms with the fact that I
> was having big problems with depression. I am on zoloft, but it sounds
> like you are not too crazy about meds. You might want to find a
> counselor Jake can talk to. There are also some naturally occuring
> anti-depressants - what they are escapes me at the moment. Please don't
> discount the idea that he may be depressed. It is very hard to explain
> to someone who has not been there. It is not just "feeling blue". For
> me it was a general fatigue and apathy, and while I did not actively
> plan suicide, I could not think of any particularly good reason to
> continue living. It can be pretty dangerous. It can't hurt to have it
> checked out - Ann
>
> > ----------
> > From: Johnnie DeGrand[SMTP:jdegrand(AT)up.net]
> > Sent: Friday, June 12, 1998 5:01 AM
> > To: Johnnie DeGrand; Doc; Judi(AT)fuse.net
> > Cc: tmic-list(AT)eskimo.com
> > Subject: Re: JAKE
> >
> > Also wanted to let you know that Jake's original Doc, Dr. Mark
> > Splainguard, was very helpful and informative, and gave us much of the
> > info that we later got fromthis list regarding symptoms and treatment.
> > However, we left that hospital really thinking that Jake's main
> > problem would be living from a wheelchair....but the main problem as
> > you all know, are the other symptoms...fatigue, pain, etc. That is
> > what the Doc's don't get. Judi
> >
> > ----------
> > From: Johnnie DeGrand <jdegrand(AT)up.net>
> > To: Doc <doc09(AT)fuse.net>; Judi(AT)fuse.net
> > Cc: tmic-list(AT)eskimo.com
> > Subject: Re: JAKE
> > Date: Friday, June 12, 1998 7:44 AM
> >
> > Doc, Thanks for your reply, however I do already have that info
> > printed out and the Doc has read it, etc,etc. But you see, they think
> > that all these symptoms can be "fixed" by meds, and they can't. The
> > meds just cause others problems and they have never given Jake relief
> > from pain or fatigue...so right now we do not have Jake on meds, just
> > a combo of Grape seed extract and pine Bark and Red Wine
> > extract....they think I'm goofy. They also think (like others have
> > been complaining) that the fatigue is caused by deprssion and want to
> > give him anti'depressants or some such thing. I don't believe his
> > fatigue is caused by depression but rather that he has only 1/4 of his
> > body working....if I walk for 5 miles my arms and back and shoulders
> > are helping my legs...if he wheels for 5 miles he just has his arms he
> > has no muscle help from his nipples down. I think I will go thru the
> > archives and print out a select few of lpostings that offer symptoms
> > and testimonies to fact that meds have not really helped. Thanks
> > again. Judi
> >
> > ----------
> > > From: Doc <doc09(AT)fuse.net>
> > > To: Judi(AT)fuse.net
> > > Cc: tmic-list(AT)eskimo.com
> > > Subject: JAKE
> > > Date: Friday, June 12, 1998 3:06 AM
> > >
> > > Judi:
> > >
> > > Rather than go into my own anecdotal rambling
> > > your questions are probably best answered at
> > > http://www.myelitis.org/tm.htm. First click on
> > > the item related to "Symptoms etc." and then
> > > on "Medical and Rehabilitation Treatment".
> > > Print them out and give to the supposed learned
> > > folks. If they have more questions tell them to look
> > > us up. Not to leave anyone out but I'm confident
> > > that Jan, Phil, Gunny and I can fill in their blanks.
> > > Just tell them that (we have individuals in the group
> > > who have more experience with TM than they are
> > > old <g>. Yes, I'm not happy with the medical
> > > profession or social workers who think they know
> > > all about all. I get on my soapbox another time.
> > > You may want to read some of our stories and
> > > pick one or two to take to the Doc. The Q regarding
> > > the difference between TM and someone who is a
> > > para from a wreck can only depends on the severity
> > > of the injury is it a total or only partial transection of the
> > > cord or is it just bruised. Symptoms vary. Remember that
> > > with TM there is a swelling at some point in the cord
> > > T5-6 in Jakes case. When the swelling occurs the cord
> > > is compressed and the microscopic fibers within the cord
> > > are damaged and many are broken. The reason that our
> > > symptoms vary is that there is some regeneration of these
> > > fibers but there is no way to insure that the broken ends will
> > > reconnect as they were. I saw recovery for 18 months. In
> > > general another person with a T5-6 injury could have similar
> > > symptoms. Finally, after the Doc does his reading and is not
> > > willing to learn more, I think we might be able to find a hammer
> > > between us and you can pound it in to his head if it is not too
> > > thick.
> > >
> > > Good Luck..Hope this helps
> > >
> > > Doc
> > >
> >
> >
> >
> >
>
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Ann, Thank you for your reply. =
Believe me, I am very aware of watching for depression with Jake, =
because if it was me I think I might be really bummed. And =
sometimes he is bummed, but mostly he is not. Mostly he is active =
and joking and laughing and just having a good ol time. If you =
read some of the e-mails I have passed on to Christi you would see that =
Jake isn't depressed, that's is why I don't want to give him meds for =
it. He is actually tired a whole lot faster than someone who has their =
entire body working. Phil explained great with the analogy of his =
V-8 engine and I am going to show that to the Doc. You see they =
want Jake to play basketball from his wheelchair and to lift weights and =
all that...well, he does do all of that but not as long as his friends =
can and maybe not every day. And if he plays b-ball for an hour =
then he has to lay down. And the Doc's keep telling me that he =
shouldn't have to lay down....so therefore I go back and forth between =
thinking Jake needs to rest after excertion, and thinking if he worked =
harder he would be stronger. I just don't know =
Judi
----------
> From: Lindstrom, Ann (Ann) =
<Ann.Lindstrom(AT)octel.com>
> To: Doc <doc09(AT)fuse.net>; =
Judi(AT)fuse.net; =
'Johnnie DeGrand' <jdegrand(AT)up.net>
> Cc: tmic-list(AT)eskimo.com
> Subject: RE: JAKE
> Date: Friday, June =
12, 1998 11:38 AM
>
> Judi - Jake's fatique could be caused =
by both the TM and depression.
> There is a very big connection =
between the mind and body, and depression
> often occurs when the =
body has major problems. Also - Jake is having to
> adjust =
to some really major stuff here. Anyway, after more than =
18
> months of myelitis fun, I also had to come to terms with the =
fact that I
> was having big problems with depression. I am =
on zoloft, but it sounds
> like you are not too crazy about meds. =
You might want to find a
> counselor Jake can talk to. =
There are also some naturally occuring
> anti-depressants - =
what they are escapes me at the moment. Please don't
> =
discount the idea that he may be depressed. It is very hard to =
explain
> to someone who has not been there. It is not just =
"feeling blue". For
> me it was a general fatigue =
and apathy, and while I did not actively
> plan suicide, I could =
not think of any particularly good reason to
> continue living. =
It can be pretty dangerous. It can't hurt to have it
> =
checked out - Ann
>
> > ----------
> > From: =
Johnnie DeGrand[SMTP:jdegrand(AT)up.net]
> > Sent: Friday, June 12, 1998 5:01 =
AM
> > To: Johnnie DeGrand; Doc; Judi(AT)fuse.net
> =
> Cc: tmic-list(AT)eskimo.com
> > Subject: Re: JAKE
> > =
> > Also wanted to let you know that Jake's original Doc, Dr. =
Mark
> > Splainguard, was very helpful and informative, and =
gave us much of the
> > info that we later got fromthis list =
regarding symptoms and treatment.
> > However, we left that =
hospital really thinking that Jake's main
> > problem would be =
living from a wheelchair....but the main problem as
> > you all =
know, are the other symptoms...fatigue, pain, etc. =A0That is
> =
> what the Doc's don't get. =A0Judi
> >
> > =
----------
> > From: Johnnie DeGrand <jdegrand(AT)up.net>
> > To: Doc <doc09(AT)fuse.net>; =
Judi(AT)fuse.net
> > Cc: tmic-list(AT)eskimo.com
> > Subject: Re: JAKE
> > Date: =
Friday, June 12, 1998 7:44 AM
> >
> > Doc, Thanks for =
your reply, however I do already have that info
> > printed out =
and the Doc has read it, etc,etc. =A0But you see, they think
> =
> that all these symptoms can be "fixed" by meds, and they =
can't. =A0The
> > meds just cause others problems and they have =
never given Jake relief
> > from pain or fatigue...so right now =
we do not have Jake on meds, just
> > a combo of Grape seed =
extract and pine Bark and Red Wine
> > extract....they think =
I'm goofy. =A0They also think (like others have
> > been =
complaining) that the fatigue is caused by deprssion and want to
> =
> give him anti'depressants or some such thing. I don't believe =
his
> > fatigue is caused by depression but rather that he has =
only 1/4 of his
> > body working....if I walk for 5 miles my =
arms and back and shoulders
> > are helping my legs...if he =
wheels for 5 miles he just has his arms he
> > has no muscle =
help from his nipples down. =A0I think I will go thru the
> > =
archives and print out a select few of lpostings that offer =
symptoms
> > and testimonies to fact that meds have not really =
helped. =A0Thanks
> > again. =A0Judi
> >
> > =
----------
> > > From: Doc <doc09(AT)fuse.net>
> > > To: Judi(AT)fuse.net
> =
> > Cc: tmic-list(AT)eskimo.com
> > > Subject: JAKE
> > > =
Date: Friday, June 12, 1998 3:06 AM
> > >
> > > =
Judi:
> > >
> > > Rather than go into my own =
anecdotal rambling
> > > your questions are probably best =
answered at
> > > http://www.myelitis.org/tm.htm. First click on
> > > the item related to =
"Symptoms etc." and then
> > > on "Medical =
and Rehabilitation Treatment".
> > > Print them out and =
give to the supposed learned
> > > folks. If they have more =
questions tell them to look
> > > us up. Not to leave anyone =
out but I'm confident
> > > that Jan, Phil, Gunny and I can =
fill in their blanks.
> > > Just tell them that =A0(we =
=A0have individuals in the group
> > > who have more =
experience with TM than they are
> > > old <g>. Yes, =
I'm not happy with the medical
> > > profession or social =
workers who think they know
> > > all about all. I get on my =
soapbox another time.
> > > You may want to read some of our =
stories and
> > > pick one or two to take to the Doc. The Q =
regarding
> > > the difference between TM and someone who is =
a
> > > para from a wreck can only depends on the =
severity
> > > of the injury is it a total or only partial =
transection of the
> > > cord or is it just bruised. =
Symptoms vary. Remember that
> > > with TM there is a =
swelling at some point in the cord
> > > T5-6 in Jakes case. =
When the swelling occurs the cord
> > > is compressed and =
the microscopic fibers within the cord
> > > are damaged and =
many are broken. The reason that our
> > > symptoms vary is =
that there is some regeneration of these
> > > fibers but =
there is no way to insure that the broken ends will
> > > =
reconnect as they were. I saw recovery for 18 months. In
> > =
> general another person with a T5-6 injury could have =
similar
> > > symptoms. Finally, after the Doc does his =
reading and is not
> > > willing to learn more, I think we =
might be able to find a hammer
> > > between us and you can =
pound it in to his head if it is not too
> > > =
thick.
> > >
> > > Good Luck..Hope this =
helps
> > >
> > > Doc
> > > =
> >
> >
> >
> >
>