re baclofin. I presently take 30 mg. of baclofin twice a day. I spoke numerous
times to my neuro re dosage. I even spoke to him about having a balofin pump
installed. to answer the first part. baclofin has serious side effect
especially damage to the liver. the pump was not recommended due to problems
with infections. he suggested that my dosage is the max he can prescribe. here
in montreal we are having a severe heat wave. not seen since august of 2007.
the temp will be around 85-89 with the humidex around 105 for the rest of the
week. one thing about my gorgeous body ( just kidding) is I have little control
of my body temp. it could be minus 25 degrees celcious and i am hot.,
sometimes at night when I want to cuddle with my wife. I feel warm only to be
told move over you are freezing to the touch. so be it. her lost . we with TM
live with all sorts of challenges. like a box of chocolates. Every day is
different. makes life exciting (ya right). that is one reason i enjoy this
group. I am ecouraged by it and am able to encourage others to persevere. Have
a great day Gerry
Date: Tue, 6 Jul 2010 02:13:22 -0700
From: tmic-digest-requ...@eskimo.com
Subject: tmic-digest Digest V2010 #283
To: tmic-dig...@eskimo.com
--Forwarded Message Attachment--
tmic-digest Digest Volume 2010 : Issue 283
Today's Topics:
Re: [TMIC] re walking with a cane [ "Janice Nichols" <jan...@centurytel ]
Re: [TMIC] I'm back! [ "Janice Nichols" <jan...@centurytel ]
Re: [TMIC] I'm back! [ "Pieter and Heather" <pieterheather ]
Re: [TMIC] I'm back! [ "Lori Biehler" <lbieh...@earthlink. ]
[TMIC] Sativex [ Regina Rummel <regina...@sbcglobal. ]
--Forwarded Message Attachment--
Date: Mon, 5 Jul 2010 11:43:52 -0500
From: jan...@centurytel.net
To: suret...@sympatico.ca; tmic-list@eskimo.com
Subject: Re: [TMIC] re walking with a cane
Gerry, are you not allowed enough baclofen to control the spasms? I use
that too, and it took a while to get the right amount to work, but I really
like it. Of
course, I realize we are all different and can tolerate only so much. I
would talk to your doc and see what can be done with the baclofen.
I also would HATE your weather. My body does not tolerate heat, especially
with not having fans going in the rooms I am in. So, we keep the temp low,
and
have ceiling fans in every room. Hope you get
improvement. I had to bug my doc several times for amount changes in meds
to get as comfortable
as I am. Hope you can too - let me know.
Janice
From: Gerry Surette
Sent: Monday, July 05, 2010 7:49 AM
To: tmic-list@eskimo.com
Subject: [TMIC] re walking with a cane
I too have severe nerve pain whether I walk do chores or whatever. I take
gabapentin ; for nerve pain xanaflex for spasticity and baclofen the
combination helps ne survive without the zanaflex i have trouble putting one
foot ahead of the other, it feels like i am pulling a 30 lb. ball with every
step. I too walk with a cane and use the walls for balance but outside i use a
walker with a seat as I have to sit down after a few steps due to spasms. but i
keep perserving as they say no pain no gain Gerry in plus 105 degrees with the
humidex in montreal
--Forwarded Message Attachment--
Date: Mon, 5 Jul 2010 11:50:30 -0500
From: jan...@centurytel.net
To: rumc...@hotmail.com; tmic-list@eskimo.com
Subject: Re: [TMIC] I'm back!
Jeron,
You made my day!!! Ever think you were sent to Trinidad for a reason?
Your goodness and caring in reaching out to another has paid off tremendously -
both
for you and Christa. You are my kind of people!
Janice
From: j ra
Sent: Monday, July 05, 2010 8:40 AM
To: Transverse Myelytis
Subject: [TMIC] I'm back!
Hi guys,
A couple of months ago I left Brasil for the Caribbean to spend some time alone
and try to rediscover life before TM. It's been tough, especially because I
decided to quit meds. No gabapentin, no miosan (for the shakes, think it's
called xanaflex elsewhere) no valium, just sleeping pills. I know most of you
thought I was pushing my wife away, but she's been really understanding as to
why I needed to regain some independence. I did all the things I said I was
going to do and I proved that TMers still have a lot of life in them. I know I
am lucky to be a "walker", allbeit with a cane, but we are strong people. As a
group, we can do anything and we are always going to be there for
eachother....no matter what. I really think that without you guys, I could not
complete my journey, so thanks!
Here's the weird part, I found a little girl with TM in Trinidad, my home
country in the Caribbean. I saw an article about her in the newspapers and
decided to contact her parents. I met them. The kid's name is Christa. She is
10 years old and has been diagnosed with TM some 10 months now, but her family
does not have the money for treatment and treatment is not available in
Trinidad. So they've been battling with this thing of ours all the while
without proper care, so I got involved. Christa, is the sweetest little kid I
ever met, she makes your heart melt with her innocent smile and she's so upbeat
all the time, despite being in a wheelchair. She has the strenght that I think
I was looking for all along. Imagine, I actually thought that while I was there
I was going to do everything in my power to help her, but all along she was
helping me.....
Her parents managed to raise somewhere near $120000 US already and they plan to
take her to Johns Hopkins. I got in contact with the doctors there and they are
ready to accept her case.
So, I'm not sure what actually happened to me over the last few months, but I
think I found what I was looking for....not in a selfish journey to the
islands, but in the eyes of a child.
Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a
bit then take my wife out for lunch, then take her to the FIFA World Cup finals
in South Africa. Another journey perhaps, this time with my wife!
Bye guys,
Jeron
Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
--Forwarded Message Attachment--
Date: Mon, 5 Jul 2010 11:11:25 -0600
From: pieterheat...@shaw.ca
To: rumc...@hotmail.com; tmic-list@eskimo.com
Subject: Re: [TMIC] I'm back!
Oh Jeron,
You have made me so happy to read this letter.
I have wondered how you were doing.
Thank you for letting us know how you are.
Wow!! What a journey you have had.
To meet Christa and to be able to help her while all along she in some way was
helping you too.
I'm sure that you and Christa will stay in touch.
Please let us know how she makes out at John Hopkins if possible.
Enjoy yourself with some relaxing at home with you wife and your cat.
{{Hugs}}
from Heather in Calgary
----- Original Message -----
From: j ra
To: Transverse Myelytis
Sent: Monday, July 05, 2010 7:40 AM
Subject: [TMIC] I'm back!
Hi guys,
A couple of months ago I left Brasil for the Caribbean to spend some time alone
and try to rediscover life before TM. It's been tough, especially because I
decided to quit meds. No gabapentin, no miosan (for the shakes, think it's
called xanaflex elsewhere) no valium, just sleeping pills. I know most of you
thought I was pushing my wife away, but she's been really understanding as to
why I needed to regain some independence. I did all the things I said I was
going to do and I proved that TMers still have a lot of life in them. I know I
am lucky to be a "walker", allbeit with a cane, but we are strong people. As a
group, we can do anything and we are always going to be there for
eachother....no matter what. I really think that without you guys, I could not
complete my journey, so thanks!
Here's the weird part, I found a little girl with TM in Trinidad, my home
country in the Caribbean. I saw an article about her in the newspapers and
decided to contact her parents. I met them. The kid's name is Christa. She is
10 years old and has been diagnosed with TM some 10 months now, but her family
does not have the money for treatment and treatment is not available in
Trinidad. So they've been battling with this thing of ours all the while
without proper care, so I got involved. Christa, is the sweetest little kid I
ever met, she makes your heart melt with her innocent smile and she's so upbeat
all the time, despite being in a wheelchair. She has the strenght that I think
I was looking for all along. Imagine, I actually thought that while I was there
I was going to do everything in my power to help her, but all along she was
helping me.....
Her parents managed to raise somewhere near $120000 US already and they plan to
take her to Johns Hopkins. I got in contact with the doctors there and they are
ready to accept her case.
So, I'm not sure what actually happened to me over the last few months, but I
think I found what I was looking for....not in a selfish journey to the
islands, but in the eyes of a child.
Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a
bit then take my wife out for lunch, then take her to the FIFA World Cup finals
in South Africa. Another journey perhaps, this time with my wife!
Bye guys,
Jeron
Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
--Forwarded Message Attachment--
Date: Mon, 5 Jul 2010 13:53:56 -0400
From: lbieh...@earthlink.net
To: rumc...@hotmail.com; tmic-list@eskimo.com
Subject: Re: [TMIC] I'm back!
Hi Jeron,
Amazing how well one feels when they help others!
Enjoy your time in South Africa!
Lori
From: j ra
Sent: Monday, July 05, 2010 9:40 AM
To: Transverse Myelytis
Subject: [TMIC] I'm back!
Hi guys,
A couple of months ago I left Brasil for the Caribbean to spend some time alone
and try to rediscover life before TM. It's been tough, especially because I
decided to quit meds. No gabapentin, no miosan (for the shakes, think it's
called xanaflex elsewhere) no valium, just sleeping pills. I know most of you
thought I was pushing my wife away, but she's been really understanding as to
why I needed to regain some independence. I did all the things I said I was
going to do and I proved that TMers still have a lot of life in them. I know I
am lucky to be a "walker", allbeit with a cane, but we are strong people. As a
group, we can do anything and we are always going to be there for
eachother....no matter what. I really think that without you guys, I could not
complete my journey, so thanks!
Here's the weird part, I found a little girl with TM in Trinidad, my home
country in the Caribbean. I saw an article about her in the newspapers and
decided to contact her parents. I met them. The kid's name is Christa. She is
10 years old and has been diagnosed with TM some 10 months now, but her family
does not have the money for treatment and treatment is not available in
Trinidad. So they've been battling with this thing of ours all the while
without proper care, so I got involved. Christa, is the sweetest little kid I
ever met, she makes your heart melt with her innocent smile and she's so upbeat
all the time, despite being in a wheelchair. She has the strenght that I think
I was looking for all along. Imagine, I actually thought that while I was there
I was going to do everything in my power to help her, but all along she was
helping me.....
Her parents managed to raise somewhere near $120000 US already and they plan to
take her to Johns Hopkins. I got in contact with the doctors there and they are
ready to accept her case.
So, I'm not sure what actually happened to me over the last few months, but I
think I found what I was looking for....not in a selfish journey to the
islands, but in the eyes of a child.
Now I'm home in Rio de Janeiro and I think I'm going to play with my cat for a
bit then take my wife out for lunch, then take her to the FIFA World Cup finals
in South Africa. Another journey perhaps, this time with my wife!
Bye guys,
Jeron
Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.
--Forwarded Message Attachment--
Date: Mon, 5 Jul 2010 20:10:50 -0700
From: regina...@sbcglobal.net
To: tmic-list@eskimo.com
Subject: [TMIC] Sativex
Frank,
Do you know why Sativex is only available in England?
