hello

[Guest guest]

When I have my dose of chocolate, it's who gets a thrashing!

>

> welcome

> i am 45 (still find that bizarre!) and have sma 2. i live in england

and

> dote on a toy poodle and two hens when not thrashing alana at

literati on

> ;-)

>

> linda

>

[Guest guest]

hmmm have we slipped back into the queer/sexuality/kinky thread already?

2008/11/18 Alana <alrt@...>

> When I have my dose of chocolate, it's who gets a thrashing!

>

>

>

> >

> > welcome

> > i am 45 (still find that bizarre!) and have sma 2. i live in england

> and

> > dote on a toy poodle and two hens when not thrashing alana at

> literati on

> > ;-)

> >

> > linda

> >

>

>

>

[Guest guest]

Welcome!

Lori

Sent from my Verizon BlackBerry

hello

I just wanted to say hi to everyone and introduce myself. My name is

Kemp I have type 1/2. I am almost 28 and consider myself to be a positive and

very happy person. I heard about this group from my wonderful husband, Doug, I

would be sitting next to him and glance over to see your e-mails and wanted to

contribute. Thank you Jenn

[Guest guest]

Hi Jenn!

On Nov 17, 2008, at 10:32 PM, Kemp wrote:

> I just wanted to say hi to everyone and introduce myself. My name is

> Kemp I have type 1/2. I am almost 28 and consider myself to

> be a positive and very happy person. I heard about this group from

> my wonderful husband, Doug, I would be sitting next to him and

> glance over to see your e-mails and wanted to contribute. Thank you

> Jenn

>

>

[Guest guest]

Hi Jen,

Welcome to the list! Nice to have you here.

Have a nice day,

Camilla

>

> I just wanted to say hi to everyone and introduce myself. My name is

Kemp I have type 1/2. I am almost 28 and consider myself to

be a positive and very happy person. I heard about this group from my

wonderful husband, Doug, I would be sitting next to him and glance

over to see your e-mails and wanted to contribute. Thank you Jenn

>

>

>

>

>

[Guest guest]

I am, as usual, running late! But wanted to say hello to you as you have

joined at the point where usually I would be far too tired and weak to think

my opinion was worth anything, but for some reason I have come out of the

closet and stop lurking *grin*

I am an old lady now at 43, diagnosed at 3 1/2 with 1/2 also, although I now

think I was probably a three but my memory is not so hot! Looks like I may

have stood up and then immediately sat back down and was too weak to do it

again! I am terrible at intros, so to anyone out there, if you are

interested, ask! Lol.

Have fun on the list (your pics at Gimps Gone Wild are great btw! I may

invest if I have the spare cash!).

> On Nov 17, 2008, at 10:32 PM, Kemp wrote:

>

> I just wanted to say hi to everyone and introduce myself. My name is

> Kemp I have type 1/2. I am almost 28 and consider myself to

> be a positive and very happy person. I heard about this group from

> my wonderful husband, Doug, I would be sitting next to him and

> glance over to see your e-mails and wanted to contribute. Thank you

> Jenn

>

>

>

[Guest guest]

Hi

My son fevers every 3-4 weeks also.  We have tried prednisone twice so far,

worked like a charm.  His feevr was 4 weeks later after the first try of

prednisone.  I discussed with the ediatrician.  He was recently at a conference

in Washington where was discussed.  He said that one dose every month has

proven to be very safe (my son takes a 20mg pill).  He also said that the person

who did the recnt study on the T & A spoke.  My pediatrician feels that if my son

is still fevering by August, we should consider T & A before he starts

kindergarten.  The prednisone works well, we are praying that he grows out of it

by this summer!!

[Guest guest]

Welcome to the group. I have been a part of this group since roughly 03. We

are from the Boston area also. Breana has been getting her medical care at BCH

since 02 and we have been seeing Dr. Kastner at NIH since jan.03

What study are you talking about at MGH and who is running it? Just curious.

[Guest guest]

Dr. ow is running a study at MGH. I had found out about through a

Pediatrician that I switch  to get answers about Kristophers fevers and he refer

me to Dr. ow.

[Guest guest]

Dr. ow is running a study at MGH. I had found out about through a

Pediatrician that I switch  to get answers about Kristophers fevers and he refer

me to Dr. ow.

[Guest guest]

Sorry about your Grandma

Congradulations on your teaching

LMay

From: Alene <michellealene@...>Subject: HelloCc: , FriendsWithMS , Hugs-N-Pain , lds_circle_of_friends , MormonW Date: Sunday, December 14, 2008, 6:38 PM

Hello Everyone,

Sorry have not been around much. I have had a busy week. We found out that my grandma on my mom's side had two strokes within a four day period. When my mom spoke to her between them my grandma sounded confused and depressed. At that time we did not know she had the strokes until we spoke to my sister and she told us what happened. I also got called and ask to sub for a member of my church to teach the three years old children. The children were a little bit hyper during class so I had to cut the lesson short because they were not interested in the lesson. So for the remainder of the class I let them color a picture I had copyed and color on other pieces of paper I had with me. I totally enjoyed being with these children. I also got asked to teach other class next Sunday. I totally like to teach it gives me the chance to study and pray about each subject that I am given.

Well that is all that's all for now and take care and have a wonderful week.

A. Stowell

[Guest guest]

Sorry about your Grandma

Congradulations on your teaching

LMay

From: Alene <michellealene@...>Subject: HelloCc: , FriendsWithMS , Hugs-N-Pain , lds_circle_of_friends , MormonW Date: Sunday, December 14, 2008, 6:38 PM

Hello Everyone,

Sorry have not been around much. I have had a busy week. We found out that my grandma on my mom's side had two strokes within a four day period. When my mom spoke to her between them my grandma sounded confused and depressed. At that time we did not know she had the strokes until we spoke to my sister and she told us what happened. I also got called and ask to sub for a member of my church to teach the three years old children. The children were a little bit hyper during class so I had to cut the lesson short because they were not interested in the lesson. So for the remainder of the class I let them color a picture I had copyed and color on other pieces of paper I had with me. I totally enjoyed being with these children. I also got asked to teach other class next Sunday. I totally like to teach it gives me the chance to study and pray about each subject that I am given.

Well that is all that's all for now and take care and have a wonderful week.

A. Stowell

[Guest guest]

Sorry about your Grandma

Congradulations on your teaching

LMay

From: Alene <michellealene@...>Subject: HelloCc: , FriendsWithMS , Hugs-N-Pain , lds_circle_of_friends , MormonW Date: Sunday, December 14, 2008, 6:38 PM

Hello Everyone,

Sorry have not been around much. I have had a busy week. We found out that my grandma on my mom's side had two strokes within a four day period. When my mom spoke to her between them my grandma sounded confused and depressed. At that time we did not know she had the strokes until we spoke to my sister and she told us what happened. I also got called and ask to sub for a member of my church to teach the three years old children. The children were a little bit hyper during class so I had to cut the lesson short because they were not interested in the lesson. So for the remainder of the class I let them color a picture I had copyed and color on other pieces of paper I had with me. I totally enjoyed being with these children. I also got asked to teach other class next Sunday. I totally like to teach it gives me the chance to study and pray about each subject that I am given.

Well that is all that's all for now and take care and have a wonderful week.

A. Stowell

[Guest guest]

Hi . What state or area do you live in? There are a few options I know of

lending libraries through easter Seals or Muscular Dystrophy Association,fundng

through Bureau of children with Handicaps, or ordered through insurance/or

medicaid since it is a safety issue. Let me know if I can help....

Ronna

Hello

I am a mom with two SMA type 2 babies. I wanted to know if anyone knows

where I could get adaptive car seats for them. My son is 5 and very

weak, my daughter is 1.5 and getting weaker. I would greatly appreciate

any input.

[Guest guest]

We are in Jersey City, New Jersey.

________________________________

From: " mominsearch@... " <mominsearch@...>

Sent: Sunday, January 11, 2009 6:57:22 PM

Subject: Re: Hello

Hi . What state or area do you live in? There are a few options I know of

lending libraries through easter Seals or Muscular Dystrophy Association, fundng

through Bureau of children with Handicaps, or ordered through insurance/or

medicaid since it is a safety issue. Let me know if I can help....

Ronna

Hello

I am a mom with two SMA type 2 babies. I wanted to know if anyone knows

where I could get adaptive car seats for them. My son is 5 and very

weak, my daughter is 1.5 and getting weaker. I would greatly appreciate

any input.

[Guest guest]

,

Our insurance paid for a Columbia Special Needs Car Seat for Brett. He got one

around 4 years old and just received a bigger size last year at 8 years old.

Although he will probably grow out of the bigger one this year, it has been a

blessing for us since we do not have an accessible van yet. Feel free to ask me

anything though!

Kristal- Mom to Brett- SMA II- 9 years old

Visit Brett @ www.our-sma-angels.com/brett

OR www.caringbridge.org/visit/brettwilson

Hello

I am a mom with two SMA type 2 babies. I wanted to know if anyone knows

where I could get adaptive car seats for them. My son is 5 and very

weak, my daughter is 1.5 and getting weaker. I would greatly appreciate

any input.

------------------------------------------------------------------------------

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.176 / Virus Database: 270.10.5/1886 - Release Date: 1/10/2009

6:01 PM

[Guest guest]

Hi! And your name is . . . ? Good to hear from you.

Bill

In a message dated 1/11/2009 8:19:10 A.M. Pacific Standard Time, Cheekyoops@... writes:

This list has been very active recently, and it's nice to see new people getting advice from so many people here.

My husbad was the one with the ICD, but he didn't like computers, so I was the one reading and posting here. Sadly, he passed away 2 1/2 years ago, but I still read all the posts coming through here, but I don't participate much.

I just wanted to say HI to all the new folks here.

New year...new news. Be the first to know what is making headlines.

[Guest guest]

welcome Cheeky im live in Az

From: Cheeky <Cheekyoops@...> Sent: Monday, January 12, 2009 8:35:29 AMSubject: Re: Hello

My name is , Cheeky is my cat's nickname, and i use it for computing.

Re: Hello

Hi! And your name is . . . ? Good to hear from you.

Bill

In a message dated 1/11/2009 8:19:10 A.M. Pacific Standard Time, Cheekyoopsgmail (DOT) com writes:

This list has been very active recently, and it's nice to see new people getting advice from so many people here.

My husbad was the one with the ICD, but he didn't like computers, so I was the one reading and posting here. Sadly, he passed away 2 1/2 years ago, but I still read all the posts coming through here, but I don't participate much.

I just wanted to say HI to all the new folks here.

New year...new news. Be the first to know what is making headlines.

[Guest guest]

Thank you for the greeting, WT!

I'm so sorry to hear about your husband. If you'd like to talk about

him, I'm right here listening.

Janne in Norway

>

> Hi! And your name is . . . ? Good to hear from you.

> Bill

>

>

> In a message dated 1/11/2009 8:19:10 A.M. Pacific Standard Time,

> Cheekyoops@... writes:

>

>

>

>

> This list has been very active recently, and it's nice to see new

people

> getting advice from so many people here.

>

> My husbad was the one with the ICD, but he didn't like computers,

so I was

> the one reading and posting here. Sadly, he passed away 2 1/2

years ago, but

> I still read all the posts coming through here, but I don't

participate

> much.

>

> I just wanted to say HI to all the new folks here.

>

>

>

> **************New year...new news. Be the first to know what is making

> headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

>

[Guest guest]

Thank you for the greeting, NANCY (Sorry, Bill

I'm so sorry to hear about your husband. If you'd like to talk about

him, I'm right here listening. Take care,

Janne in Norway

> >

> > Hi! And your name is . . . ? Good to hear from you.

> > Bill

> >

> >

> > In a message dated 1/11/2009 8:19:10 A.M. Pacific Standard Time,

> > Cheekyoops@ writes:

> >

> >

> >

> >

> > This list has been very active recently, and it's nice to see new

> people

> > getting advice from so many people here.

> >

> > My husbad was the one with the ICD, but he didn't like computers,

> so I was

> > the one reading and posting here. Sadly, he passed away 2 1/2

> years ago, but

> > I still read all the posts coming through here, but I don't

> participate

> > much.

> >

> > I just wanted to say HI to all the new folks here.

> >

> >

> >

> > **************New year...new news. Be the first to know what is

making

> > headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

> >

>

[Guest guest]

My husband, Tom, was only 46 years old when he got his ICD, in 1996. over the next 10 years, he was zapped 30 plus times, but otherwise in genearlly good health, although he was unable to work since 1996. In 2005, his kidneys started failing, and they were failing fast. He started dialysis, and he was put on a kidney transplant waiting list. Getting a cadaver donor can take 2-3 years, and he was getting worse, so his relatives all tested to be a donor, and one of his brothers was a perfect match. His brother went through all the reqired tests to determine if he was healthy enough to live with one kidney. The brother had one more doctor appt to go to on May 16, 2006, then the transplant surgery would be scheduled asap after that. Tom died on May 15th. He was 56 years old.

Re: Hello

Thank you for the greeting, NANCY (Sorry, Bill :)I'm so sorry to hear about your husband. If you'd like to talk abouthim, I'm right here listening. Take care, Janne in Norway> >> > Hi! And your name is . . . ? Good to hear from you.> > Bill> > > > > > In a message dated 1/11/2009 8:19:10 A.M. Pacific Standard Time, > > Cheekyoops@ writes:> > > > > > > > > > This list has been very active recently, and it's nice to see new> people > > getting advice from so many people here.> > > > My husbad was the one with the ICD, but he didn't like computers,> so I was > > the one reading and posting here. Sadly, he passed away 2 1/2> years ago, but > > I still read all the posts coming through here, but I don't> participate > > much.> > > > I just wanted to say HI to all the new folks here.> > > > > > > > **************New year...new news. Be the first to know what ismaking > > headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)> >>------------------------------------Be sure to visit and use other ZapLife.org services:The ZapperBBS at http://zaplife.org/phpBB2/viewforum.php?f=11 - Email list forum at /2 - Email delivery of the Zapper Newsletter at 2/3 - Email list forum for those involved in ICD litigation at 3/ZapChat - Real time online support group (Thursdays 8PM EST) at http://www.zaplife.org/chat.htmlZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at http://www.zaplife.org/zap4.htmThe ZAPPER Home page at http://www.zaplife.org/

[Guest guest]

I'm sorry to hear about your husband. My husband has the ICD, also. He's not much for surfing the Internet so I do all the posting and report to him.

Bonnie

From: Cheeky <Cheekyoops@...>Subject: Re: Re: Hello Date: Monday, January 12, 2009, 7:00 PM

My husband, Tom, was only 46 years old when he got his ICD, in 1996. over the next 10 years, he was zapped 30 plus times, but otherwise in genearlly good health, although he was unable to work since 1996. In 2005, his kidneys started failing, and they were failing fast. He started dialysis, and he was put on a kidney transplant waiting list. Getting a cadaver donor can take 2-3 years, and he was getting worse, so his relatives all tested to be a donor, and one of his brothers was a perfect match. His brother went through all the reqired tests to determine if he was healthy enough to live with one kidney. The brother had one more doctor appt to go to on May 16, 2006, then the transplant surgery would be scheduled asap after that. Tom died on May 15th. He was 56 years old.

Re: Hello

Thank you for the greeting, NANCY (Sorry, Bill :)I'm so sorry to hear about your husband. If you'd like to talk abouthim, I'm right here listening. Take care, Janne in Norway> >> > Hi! And your name is . . . ? Good to hear from you.> > Bill> > > > > > In a message dated 1/11/2009 8:19:10 A.M. Pacific Standard Time, > > Cheekyoops@ writes:> > > > > > > > > >

This list has been very active recently, and it's nice to see new> people > > getting advice from so many people here.> > > > My husbad was the one with the ICD, but he didn't like computers,> so I was > > the one reading and posting here. Sadly, he passed away 2 1/2> years ago, but > > I still read all the posts coming through here, but I don't> participate > > much.> > > > I just wanted to say HI to all the new folks here.> > > > > > > > ************ **New year...new news. Be the first to know what ismaking > > headlines. (http://www.aol. com/?ncid= emlcntaolcom0000 0026)> >>------------ ---------

--------- ------Be sure to visit and use other ZapLife.org services:The ZapperBBS at http://zaplife. org/phpBB2/ viewforum. php?f=11 - Email list forum at http://health. groups.. com/group/ /2 - Email delivery of the Zapper Newsletter at http://health. groups.. com/group/ 2/3 - Email list forum for those involved in ICD litigation at http://health. groups.. com/group/ 3/ZapChat - Real time online support group (Thursdays 8PM EST) at http://www.zaplife. org/chat. htmlZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at http://www.zaplife. org/zap4. htmThe ZAPPER Home page at http://www.zaplife. org/

[Guest guest]

,

What a sad story, I'm so very sorry. Must have been hard to overcome,

if ever.

May I ask if your husband's kidney failed as an adverse effect from

him taking meds, the Amiodarone?

Glad you're still with the group. BTW, which do you prefere that we

call you in here, or Cheeky?

Janne

> > >

> > > Hi! And your name is . . . ? Good to hear from you.

> > > Bill

> > >

> > >

> > > In a message dated 1/11/2009 8:19:10 A.M. Pacific Standard Time,

> > > Cheekyoops@ writes:

> > >

> > >

> > >

> > >

> > > This list has been very active recently, and it's nice to see new

> > people

> > > getting advice from so many people here.

> > >

> > > My husbad was the one with the ICD, but he didn't like computers,

> > so I was

> > > the one reading and posting here. Sadly, he passed away 2 1/2

> > years ago, but

> > > I still read all the posts coming through here, but I don't

> > participate

> > > much.

> > >

> > > I just wanted to say HI to all the new folks here.

> > >

> > >

> > >

> > > **************New year...new news. Be the first to know what is

> making

> > > headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

> > >

> >

>

>

>

> ------------------------------------

>

> Be sure to visit and use other ZapLife.org services:

>

> The ZapperBBS at

> http://zaplife.org/phpBB2/viewforum.php?f=1

> 1 - Email list forum at

> /

> 2 - Email delivery of the Zapper Newsletter at

> 2/

> 3 - Email list forum for those involved in ICD litigation at

> 3/

> ZapChat - Real time online support group (Thursdays 8PM EST) at

> http://www.zaplife.org/chat.html

> ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at

> http://www.zaplife.org/zap4.htm

> The ZAPPER Home page at

> http://www.zaplife.org/

[Guest guest]

Thanks, Janne, yes, it was so hard for me, knowing he was *this* close to getting a kidney transplant. I had a 6 year old daughter that died many years ago, and while that is still the most devastating thing for a person to go through, my husband's death has been harder for me. I guess because, when my daughter died, I had another daughter and a husband, and life had to go on as normally as possible. Now all I have is my psychocats, and my 31 year old daughter, who would rather not have much to do with me.

I guess I dont really know why my husband's kidneys failed, I guess I never asked. I think the cardiologist said, it was because his heart was so weak, other organs start not working right, with the kidneys usually going first. He was diagnosed with diabetes 3 years before he died, which we had under control with diet and exercise. Yes, he took amiodarone.

As for what to call me.........My real name is , at work, I am Lucy, my dad calls me . so I guess I'll answer to just about anything

Re: Hello

,What a sad story, I'm so very sorry. Must have been hard to overcome,if ever. May I ask if your husband's kidney failed as an adverse effect fromhim taking meds, the Amiodarone?Glad you're still with the group. BTW, which do you prefere that wecall you in here, or Cheeky?Janne> > >> > > Hi! And your name is . . . ? Good to hear from you.> > > Bill> > > > > > > > > In a message dated 1/11/2009 8:19:10 A.M. Pacific Standard Time, > > > Cheekyoops@ writes:> > > > > > > > > > > > > > > This list has been very active recently, and it's nice to see new> > people > > > getting advice from so many people here.> > > > > > My husbad was the one with the ICD, but he didn't like computers,> > so I was > > > the one reading and posting here. Sadly, he passed away 2 1/2> > years ago, but > > > I still read all the posts coming through here, but I don't> > participate > > > much.> > > > > > I just wanted to say HI to all the new folks here.> > > > > > > > > > > > **************New year...new news. Be the first to know what is> making > > > headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)> > >> >> > > > ------------------------------------> > Be sure to visit and use other ZapLife.org services:> > The ZapperBBS at > http://zaplife.org/phpBB2/viewforum.php?f=1> 1 - Email list forum at> /> 2 - Email delivery of the Zapper Newsletter at> 2/> 3 - Email list forum for those involved in ICD litigation at> 3/> ZapChat - Real time online support group (Thursdays 8PM EST) at> http://www.zaplife.org/chat.html> ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at> http://www.zaplife.org/zap4.htm> The ZAPPER Home page at> http://www.zaplife.org/

[Guest guest]

cheeky i'm sorry to hear about your husband i know you must feel both his and your dathuers loss very hard i wish there was soemthign i could say to make the pain better but i dont think any words will change the feelign you feel he was a great man ans she was a great daughter to you ! we didnot have to know her personaly or anythign to knwo that buut they both live thoguh you and other there lives have topuch and never will be foregotten by anyone who knew thim soemtiems the ones we love leave us sooner then we would wish someone once told em when there work is done they must move on to a new juorney although this dont help the hurt i knwo they both will live on in everyones heart ! kindey disease/failure is a very bad to go thoguht or have anyone around you go though i'm truely sorry for your losses i hope soemday we all can

make since of all the sinceless losses of life ! it just isnt fair however i truely hope you knwo i feel for you and wish you the best !

stacie and kira socking life for shiocking people !

From: Cheeky <Cheekyoops@...>Subject: Re: Re: Hello Date: Tuesday, January 13, 2009, 7:42 PM

Thanks, Janne, yes, it was so hard for me, knowing he was *this* close to getting a kidney transplant. I had a 6 year old daughter that died many years ago, and while that is still the most devastating thing for a person to go through, my husband's death has been harder for me. I guess because, when my daughter died, I had another daughter and a husband, and life had to go on as normally as possible. Now all I have is my psychocats, and my 31 year old daughter, who would rather not have much to do with me.

I guess I dont really know why my husband's kidneys failed, I guess I never asked. I think the cardiologist said, it was because his heart was so weak, other organs start not working right, with the kidneys usually going first. He was diagnosed with diabetes 3 years before he died, which we had under control with diet and exercise. Yes, he took amiodarone.

As for what to call me.........My real name is , at work, I am Lucy, my dad calls me . so I guess I'll answer to just about anything

Re: Hello

,What a sad story, I'm so very sorry. Must have been hard to overcome,if ever. May I ask if your husband's kidney failed as an adverse effect fromhim taking meds, the Amiodarone?Glad you're still with the group. BTW, which do you prefere that wecall you in here, or Cheeky?Janne> > >> > > Hi! And your name is . . . ? Good to hear from you.> > > Bill> > > > > > > > > In a message dated 1/11/2009 8:19:10 A.M.

Pacific Standard Time, > > > Cheekyoops@ writes:> > > > > > > > > > > > > > > This list has been very active recently, and it's nice to see new> > people > > > getting advice from so many people here.> > > > > > My husbad was the one with the ICD, but he didn't like computers,> > so I was > > > the one reading and posting here. Sadly, he passed away 2 1/2> > years ago, but > > > I still read all the posts coming through here, but I don't> > participate > > > much.> >

> > > > I just wanted to say HI to all the new folks here.> > > > > > > > > > > > ************ **New year...new news. Be the first to know what is> making > > > headlines. (http://www.aol. com/?ncid= emlcntaolcom0000 0026)> > >> >> > > > ------------ --------- --------- ------> > Be sure to visit and use other ZapLife.org services:> > The ZapperBBS at > http://zaplife. org/phpBB2/ viewforum. php?f=1>

1 - Email list forum at> http://health. groups.. com/group/ /> 2 - Email delivery of the Zapper Newsletter at> http://health. groups.. com/group/ 2/> 3 - Email list forum for those involved in ICD litigation at> http://health. groups.. com/group/ 3/> ZapChat - Real time online support group (Thursdays 8PM EST) at> http://www.zaplife. org/chat.

html> ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at> http://www.zaplife. org/zap4. htm> The ZAPPER Home page at> http://www.zaplife. org/