Like Gerry's news, the high temps and humidity in Michigan have made my TM body
miserable. Within minutes of going outside my skin feels like it is on fire,
my legs feel like petrified wood, my muscles spasm and every joint hurts. TM
won yesterday and today - and it hurt. I'm looking for a better piece of
chocolate.
Patti - Michigan
---- Gerry Surette <suret...@sympatico.ca> wrote:
>
> 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?
>
