Re: (unknown)

May 1, 2003

Hi Bev,

Welcome to both you and Don to a fine group. I am sorry about Don's diagnosis,

but you are fortunate to have found this group. I was dx 3 1/2 years ago, at

age 51, but had symptoms for about 4-5 years before that. I am mildly affected,

can walk unassisted, but slowly, and with a good limp. I find that not

overdoing it, resting, and not getting to stressed work the best for me. I

don't take any prescriptions for PLS, so I feel I am very fortunate to be so

mildly affected yet, and progressing very slowly.

Blessings, and welcome.

Laurel

(unknown)

Hi I am writing this for my husband

he is 49 years old his name is Don and has been diagnost as having PLS

he is draging his right leg and is using a cane I am doing this so he

can talk to peole that have the same thing I think there is denial

and it is a life change as with all of you and the spouses friends

ect. I am hoping that he will write to you all I know I will

Thank you'Bev

October 30, 2003

I am doing biofeedback with Dr. Glazer and so far, I think it has really

helped lessen my bouts with flare-ups and general daily pain level. I think

it is definitely worth a try.

(unknown)

> Date :

> Wed, 29 Oct 2003 12:01:06 -0800

>

> Hi everyone,

>

> My name is , I'm 18 and have just been diagnosed with vestibullitus.

> I'm relieved that after two and a half months they've finally discovered

> what it is, but I'm also a bit discouraged at the fact that it is such a

> long lasting condition and is so diffucult to get rid of.At this point I

can

> barely sit through class. I'm starting biofeedback therapy next week and

I'd

> be interested to know if anyone has had experience with this and what they

> though of it.I'd also be intersted to know what experience others have had

> with tricyclic antidepressants for pain managment. Any info any of you

have

> would be appreciated.

> Thanks.

>

> _________________________________________________________________

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>

> Please discuss all methods of treatment with your practitioner. NONE of

this is to be taken as medical advice but merely opinions offered!

>

> *****END OF MESSAGE*****

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June 17, 2004

I have questions for you as a care-giver. My 20 year old child/young woman

will transition into adult services in another year. We're in the very

beginning stages of exploring the possibilities. Given your questions, can

you come up with ideas to share with future people who will be in her life?

She's at Perkins and will have a full file, I suppose. My family has also

taken notes over the years. Even so, this scares the daylights out of me. I

just don't know what new people need - especially those who aren't trained

in CHARGE or deafblind issues. I'd really appreciate your input - and I'll

help you any way I can.

Thanks.

Martha

Where does your client live? Is she in a group home, etc.?

June 22, 2004

hey chip

glad you had a good b day. wes said he wants to make you a

present. what day exactly is your B day? I know you celebrated

over a number of days but wondering if we had KayLeigh on your

B day. we had her on the 16th . she has jaundice and has to be

in this light thing. I think its harder then the charge stuff

because I held wesley all the time with all his stuff and I cant

hold her when she is suppose to be in the light.

hope you have a great year.

KayRena n wes 10 charger Jake 8 Tristen 6 Zachary 4

KayLeigh 6 days

Chip Dixon wrote:

> Hey ya'll,

> Guess What!? I had a fun b'day week last week. Which started last

> Tuesday on my last day of school, and ended

> at the end of my b'day party last Saturday. Last Tuesday, we had a

> graduation/b'daiy party combo at my dog

> grooming class. I got some awards and presents, yay! Then on last

> Wednesday (my real b'day, June 16), Jasmine

> and I went out to see a movie called 'Garfield', it was funny! Then,

> we looked at some stores in downtown Monrovia.

> Then, my mom picked us up and took us to Mama Cafe for lunch. ,

> Jasmine's brother, gave me $20 as my

> b'day present, my mom gave me a new light jacket, and my brother gave

> me Garfield 25th anniversary edition

> comic book, yeah! Then last Thursday afternoon/evening, and his

> mom invited me to go see a movie called

> 'Around the World in 80's Day.' We went out to Chili to eat

> lunch/dinner (kind of like brunch).

> Then, the big day came on Saturday, yay! Of course, only few of my

> friends made it to my party at Miniature

> Golf/Arcade Game. and his brother Renmar, ,

> Jasmine ( was sick, so he couldn't make it),

> and also and Kendra, Curtis too! gave me a colorful

> folders with bunch of stickers inside, a

> pokemon quiz book, and a Garfield DoorKnob, and Renmar

> gave me $20, and gave me a

> check of $25, phew! I saved all of my money, which was around a total

> of $115!! I put $105 in my saving account,

> now I got around $250.05 in my saving account, yeah! And at home, I'm

> keeping my very own $10 for fun, right?

> I'm gonna save my money for my trip to Disneyland with and his

> family, for our trip to San Fransico, and also

> to Mexico (my aunt and uncle b'day are around the end of July or

> August), yep!

> Oh Well, now I'm starting my 1st day of summer school at my Dog

> Grooming class here. Only 3 days a week, so

> only got Thursday and Friday off. Type back soon, see ya!

> Ol' Chipper

> --

> _______________________________________________

> Find what you are looking for with the Lycos Yellow Pages

>

ttp://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp?SRC=\

lycos10

>

> Membership of this email support groups does not constitute membership

> in the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

June 22, 2004

hey chip

glad you had a good b day. wes said he wants to make you a

present. what day exactly is your B day? I know you celebrated

over a number of days but wondering if we had KayLeigh on your

B day. we had her on the 16th . she has jaundice and has to be

in this light thing. I think its harder then the charge stuff

because I held wesley all the time with all his stuff and I cant

hold her when she is suppose to be in the light.

hope you have a great year.

KayRena n wes 10 charger Jake 8 Tristen 6 Zachary 4

KayLeigh 6 days

Chip Dixon wrote:

> Hey ya'll,

> Guess What!? I had a fun b'day week last week. Which started last

> Tuesday on my last day of school, and ended

> at the end of my b'day party last Saturday. Last Tuesday, we had a

> graduation/b'daiy party combo at my dog

> grooming class. I got some awards and presents, yay! Then on last

> Wednesday (my real b'day, June 16), Jasmine

> and I went out to see a movie called 'Garfield', it was funny! Then,

> we looked at some stores in downtown Monrovia.

> Then, my mom picked us up and took us to Mama Cafe for lunch. ,

> Jasmine's brother, gave me $20 as my

> b'day present, my mom gave me a new light jacket, and my brother gave

> me Garfield 25th anniversary edition

> comic book, yeah! Then last Thursday afternoon/evening, and his

> mom invited me to go see a movie called

> 'Around the World in 80's Day.' We went out to Chili to eat

> lunch/dinner (kind of like brunch).

> Then, the big day came on Saturday, yay! Of course, only few of my

> friends made it to my party at Miniature

> Golf/Arcade Game. and his brother Renmar, ,

> Jasmine ( was sick, so he couldn't make it),

> and also and Kendra, Curtis too! gave me a colorful

> folders with bunch of stickers inside, a

> pokemon quiz book, and a Garfield DoorKnob, and Renmar

> gave me $20, and gave me a

> check of $25, phew! I saved all of my money, which was around a total

> of $115!! I put $105 in my saving account,

> now I got around $250.05 in my saving account, yeah! And at home, I'm

> keeping my very own $10 for fun, right?

> I'm gonna save my money for my trip to Disneyland with and his

> family, for our trip to San Fransico, and also

> to Mexico (my aunt and uncle b'day are around the end of July or

> August), yep!

> Oh Well, now I'm starting my 1st day of summer school at my Dog

> Grooming class here. Only 3 days a week, so

> only got Thursday and Friday off. Type back soon, see ya!

> Ol' Chipper

> --

> _______________________________________________

> Find what you are looking for with the Lycos Yellow Pages

>

ttp://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp?SRC=\

lycos10

>

> Membership of this email support groups does not constitute membership

> in the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

June 22, 2004

hey chip

glad you had a good b day. wes said he wants to make you a

present. what day exactly is your B day? I know you celebrated

over a number of days but wondering if we had KayLeigh on your

B day. we had her on the 16th . she has jaundice and has to be

in this light thing. I think its harder then the charge stuff

because I held wesley all the time with all his stuff and I cant

hold her when she is suppose to be in the light.

hope you have a great year.

KayRena n wes 10 charger Jake 8 Tristen 6 Zachary 4

KayLeigh 6 days

Chip Dixon wrote:

> Hey ya'll,

> Guess What!? I had a fun b'day week last week. Which started last

> Tuesday on my last day of school, and ended

> at the end of my b'day party last Saturday. Last Tuesday, we had a

> graduation/b'daiy party combo at my dog

> grooming class. I got some awards and presents, yay! Then on last

> Wednesday (my real b'day, June 16), Jasmine

> and I went out to see a movie called 'Garfield', it was funny! Then,

> we looked at some stores in downtown Monrovia.

> Then, my mom picked us up and took us to Mama Cafe for lunch. ,

> Jasmine's brother, gave me $20 as my

> b'day present, my mom gave me a new light jacket, and my brother gave

> me Garfield 25th anniversary edition

> comic book, yeah! Then last Thursday afternoon/evening, and his

> mom invited me to go see a movie called

> 'Around the World in 80's Day.' We went out to Chili to eat

> lunch/dinner (kind of like brunch).

> Then, the big day came on Saturday, yay! Of course, only few of my

> friends made it to my party at Miniature

> Golf/Arcade Game. and his brother Renmar, ,

> Jasmine ( was sick, so he couldn't make it),

> and also and Kendra, Curtis too! gave me a colorful

> folders with bunch of stickers inside, a

> pokemon quiz book, and a Garfield DoorKnob, and Renmar

> gave me $20, and gave me a

> check of $25, phew! I saved all of my money, which was around a total

> of $115!! I put $105 in my saving account,

> now I got around $250.05 in my saving account, yeah! And at home, I'm

> keeping my very own $10 for fun, right?

> I'm gonna save my money for my trip to Disneyland with and his

> family, for our trip to San Fransico, and also

> to Mexico (my aunt and uncle b'day are around the end of July or

> August), yep!

> Oh Well, now I'm starting my 1st day of summer school at my Dog

> Grooming class here. Only 3 days a week, so

> only got Thursday and Friday off. Type back soon, see ya!

> Ol' Chipper

> --

> _______________________________________________

> Find what you are looking for with the Lycos Yellow Pages

>

ttp://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp?SRC=\

lycos10

>

> Membership of this email support groups does not constitute membership

> in the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

June 22, 2004

In a message dated 6/22/2004 9:29:01 AM Eastern Standard Time,

Kayrena@... writes:

had KayLeigh on your

B day. we had her on the 16th .

Congratulations!

Friends of mine also had a baby girl on the 16th! What a great day!

June 22, 2004

In a message dated 6/22/2004 9:29:01 AM Eastern Standard Time,

Kayrena@... writes:

had KayLeigh on your

B day. we had her on the 16th .

Congratulations!

Friends of mine also had a baby girl on the 16th! What a great day!

June 22, 2004

In a message dated 6/22/2004 9:29:01 AM Eastern Standard Time,

Kayrena@... writes:

had KayLeigh on your

B day. we had her on the 16th .

Congratulations!

Friends of mine also had a baby girl on the 16th! What a great day!

July 5, 2004

In a message dated 7/5/2004 5:37:52 AM Pacific Daylight Time,

flgurlie2004@... writes:

> Does anyone else have these problems with feeds or behavior?

Dianne,

Oh yes, I have had those problems out of Zak far to may

times........... With the feedings, is she gravity fed or on a pump? We found

that if Zak

gets the bulk of his feeding on the pump, we wrap an ace bandage around his

stomach (not tight) and that keeps him from pulling out the feeding tube.

As for the behavior, Zak has serious SIB (self injurious behavior) and

he is on medication for it (several medications). The mixture we have him on

right now (4 medications) seem to lesson the aggression but nothing stops it

completely. If you want any suggestions of what I have used to keep Zak from

doing serious harm to himself, write me directly and I'll help all I can.

Debra

July 5, 2004

In a message dated 7/5/2004 5:37:52 AM Pacific Daylight Time,

flgurlie2004@... writes:

> Does anyone else have these problems with feeds or behavior?

Dianne,

Oh yes, I have had those problems out of Zak far to may

times........... With the feedings, is she gravity fed or on a pump? We found

that if Zak

gets the bulk of his feeding on the pump, we wrap an ace bandage around his

stomach (not tight) and that keeps him from pulling out the feeding tube.

As for the behavior, Zak has serious SIB (self injurious behavior) and

he is on medication for it (several medications). The mixture we have him on

right now (4 medications) seem to lesson the aggression but nothing stops it

completely. If you want any suggestions of what I have used to keep Zak from

doing serious harm to himself, write me directly and I'll help all I can.

Debra

July 5, 2004

In a message dated 7/5/2004 5:37:52 AM Pacific Daylight Time,

flgurlie2004@... writes:

> Does anyone else have these problems with feeds or behavior?

Dianne,

Oh yes, I have had those problems out of Zak far to may

times........... With the feedings, is she gravity fed or on a pump? We found

that if Zak

gets the bulk of his feeding on the pump, we wrap an ace bandage around his

stomach (not tight) and that keeps him from pulling out the feeding tube.

As for the behavior, Zak has serious SIB (self injurious behavior) and

he is on medication for it (several medications). The mixture we have him on

right now (4 medications) seem to lesson the aggression but nothing stops it

completely. If you want any suggestions of what I have used to keep Zak from

doing serious harm to himself, write me directly and I'll help all I can.

Debra

July 5, 2004

Dianne,

What type of button does she have? If it's a Bard you can use the

continuous feed tube even when using a syringes and gravity. It's a little

harder for her to knock out as it lays flat against the stomach.

As for meds, if there is any way to " not have to go on them " by all

means try it. But if not, take her to the neurologist and ask about SIB.

Debra

July 5, 2004

Dianne,

What type of button does she have? If it's a Bard you can use the

continuous feed tube even when using a syringes and gravity. It's a little

harder for her to knock out as it lays flat against the stomach.

As for meds, if there is any way to " not have to go on them " by all

means try it. But if not, take her to the neurologist and ask about SIB.

Debra

July 5, 2004

Dianne,

What type of button does she have? If it's a Bard you can use the

continuous feed tube even when using a syringes and gravity. It's a little

harder for her to knock out as it lays flat against the stomach.

As for meds, if there is any way to " not have to go on them " by all

means try it. But if not, take her to the neurologist and ask about SIB.

Debra

July 5, 2004

How is Em's vision, I don't recall.

Dylan runs his fingers through his hair on the right side all the time.

There is always discussion on if he is just stimming and if we should try to

stop it. My sense is that he does it when he is thinking and is part of how

he processes info. Yes it gets in the way sometimes, but I think trying to

stop it would be near impossible and would just be replaced by something

else.

We have not had the experience with the feeding tube.

Kim L

> Hello all....I have been noticing that Em is pulling at the right side of her

> hair with her good hand. She does it alot during the day. She also, shakes her

> head back and forth and it seems like the eye rolling up is getting more

> often. I was wondering if this behavior is part of the CHARGE syndrome? She

> also, pulls, kicks and does everything she can think of to her g-tube when

> feeding. Sometimes, she will play with plunger when i hand it to her but

> mostly she is interested in the g-tube. I'm just waiting for her to yank it

> out and hand it to me. It's a handful at feeding time. I'm pretty sure she

> knows what " NO " means. During the day she feeds every 3 and half to 4 hours.

> She is on the pedia sure and doesnt seem like she is having any problems with

> it. She really doesn't take much by her mouth but when she her g-tube is going

> it's like she is sucking a bottle. Anyways, she is almost 14 months old and we

> really have been lucky health wise so far. I worry about upcoming appts. but

> we

> live day to day and we are doing good. Does anyone else have these problems

> with feeds or behavior? If so, i would appreciate some input. As always we

> wish everyone health and happiness. Take care,

> Dianne and almost 14 months CHARGER

>

> __________________________________________________

>

July 5, 2004

Debra,

She has the gravity feed...The doctors havent said anything about meds for her

behavior..I guess they don't think it's bad enough...Not sure

Dianne

DW33333333@... wrote:

In a message dated 7/5/2004 5:37:52 AM Pacific Daylight Time,

flgurlie2004@... writes:

> Does anyone else have these problems with feeds or behavior?

Dianne,

Oh yes, I have had those problems out of Zak far to may

times........... With the feedings, is she gravity fed or on a pump? We found

that if Zak

gets the bulk of his feeding on the pump, we wrap an ace bandage around his

stomach (not tight) and that keeps him from pulling out the feeding tube.

As for the behavior, Zak has serious SIB (self injurious behavior) and

he is on medication for it (several medications). The mixture we have him on

right now (4 medications) seem to lesson the aggression but nothing stops it

completely. If you want any suggestions of what I have used to keep Zak from

doing serious harm to himself, write me directly and I'll help all I can.

Debra

July 5, 2004

Debra,

She has the gravity feed...The doctors havent said anything about meds for her

behavior..I guess they don't think it's bad enough...Not sure

Dianne

DW33333333@... wrote:

In a message dated 7/5/2004 5:37:52 AM Pacific Daylight Time,

flgurlie2004@... writes:

> Does anyone else have these problems with feeds or behavior?

Dianne,

Oh yes, I have had those problems out of Zak far to may

times........... With the feedings, is she gravity fed or on a pump? We found

that if Zak

gets the bulk of his feeding on the pump, we wrap an ace bandage around his

stomach (not tight) and that keeps him from pulling out the feeding tube.

As for the behavior, Zak has serious SIB (self injurious behavior) and

he is on medication for it (several medications). The mixture we have him on

right now (4 medications) seem to lesson the aggression but nothing stops it

completely. If you want any suggestions of what I have used to keep Zak from

doing serious harm to himself, write me directly and I'll help all I can.

Debra

July 5, 2004

Debra,

She has the gravity feed...The doctors havent said anything about meds for her

behavior..I guess they don't think it's bad enough...Not sure

Dianne

DW33333333@... wrote:

In a message dated 7/5/2004 5:37:52 AM Pacific Daylight Time,

flgurlie2004@... writes:

> Does anyone else have these problems with feeds or behavior?

Dianne,

Oh yes, I have had those problems out of Zak far to may

times........... With the feedings, is she gravity fed or on a pump? We found

that if Zak

gets the bulk of his feeding on the pump, we wrap an ace bandage around his

stomach (not tight) and that keeps him from pulling out the feeding tube.

As for the behavior, Zak has serious SIB (self injurious behavior) and

he is on medication for it (several medications). The mixture we have him on

right now (4 medications) seem to lesson the aggression but nothing stops it

completely. If you want any suggestions of what I have used to keep Zak from

doing serious harm to himself, write me directly and I'll help all I can.

Debra

July 5, 2004

Kim,,

Em's very near sighted and will be wearing glasses...She does run her fingers

through but then she starts to pull..She is actually taking hair out...At one

point she was hitting her head with her fist...She has somewhat stopped that and

more into the pulling..

Dianne

Kim Lauger wrote: