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: [email protected]
Subject: tmic-digest Digest V2010 #283
To: [email protected]
--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: [email protected]
To: [email protected]; [email protected]
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: [email protected]
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: [email protected]
To: [email protected]; [email protected]
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: [email protected]
To: [email protected]; [email protected]
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: [email protected]
To: [email protected]; [email protected]
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: [email protected]
To: [email protected]
Subject: [TMIC] Sativex
Frank,
Do you know why Sativex is only available in England?
