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I do wear AFO's to help with my walking and to give me extra balance while

standing, going other activities, etc. I used to swim on a team but the

competition grew, but the coaches gave up on me when they realized I wouldn't

be an Olympian.

I did open swim for awhile, but the fee is ridiculous, so I stopped. Now I

walk and use a stationary bike.

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I do wear AFO's to help with my walking and to give me extra balance while

standing, going other activities, etc. I used to swim on a team but the

competition grew, but the coaches gave up on me when they realized I wouldn't

be an Olympian.

I did open swim for awhile, but the fee is ridiculous, so I stopped. Now I

walk and use a stationary bike.

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<< I did open swim for awhile, but the fee is ridiculous, so I stopped. Now I

walk and use a stationary bike. >>

Sounds good to me. Back in the dark ages we couldn't enroll in the University

of Washington unless we could pass the swimming test, so I learned enough to

pass, but somehow I never did learn to swim enough to enjoy it. I admire

anyone who can swim well enough to be in competition, even for a while!

AFOs sure can make the difference between getting around pretty well and not

doing well at all.

I hope you're enjoying summer!

Kat

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<< I did open swim for awhile, but the fee is ridiculous, so I stopped. Now I

walk and use a stationary bike. >>

Sounds good to me. Back in the dark ages we couldn't enroll in the University

of Washington unless we could pass the swimming test, so I learned enough to

pass, but somehow I never did learn to swim enough to enjoy it. I admire

anyone who can swim well enough to be in competition, even for a while!

AFOs sure can make the difference between getting around pretty well and not

doing well at all.

I hope you're enjoying summer!

Kat

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  • 7 months later...
Guest guest

Marilyn,

I'm with you. I want spring to come too. I'm tired of being cold all the

time.

And you are right. this group is like one big family. I don't know

what I would do without you all.

Love Ya,

Sandy

----- Original Message -----

> Hope you all have a great weekend. Surely spring is in the air even

> if that rodent " Phil " says we still have 2 more weeks till spring.

> Don't know about the rest of you, but I'm more than ready for nice

> weather. Will be nice to put away the winter sweat shirts and pants.

> , hope you get good results with your new medication. We were

> all getting worried about you. Seems like everyone on this list is

> very caring of the others. That's so wonderful. It's like one big

> family that I never have had.

> Marilyn

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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Guest guest

Marilyn,

I'm with you. I want spring to come too. I'm tired of being cold all the

time.

And you are right. this group is like one big family. I don't know

what I would do without you all.

Love Ya,

Sandy

----- Original Message -----

> Hope you all have a great weekend. Surely spring is in the air even

> if that rodent " Phil " says we still have 2 more weeks till spring.

> Don't know about the rest of you, but I'm more than ready for nice

> weather. Will be nice to put away the winter sweat shirts and pants.

> , hope you get good results with your new medication. We were

> all getting worried about you. Seems like everyone on this list is

> very caring of the others. That's so wonderful. It's like one big

> family that I never have had.

> Marilyn

>

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

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  • 1 month later...
Guest guest

,

What part of Washington? I am in Vancouver.

hi

> I sure hope this one works....lol

>

>

> I am trying to figure this out, and chat back and forth with you...I wish

it

> would just go to your home email. too bad.

>

> Anyway, I am 28, I live in Washington, and I am wanting to have this

surgery

> done Lap. I was looking into where to have it, and then realized that it

is

> going to be a lot of travel and expense.

>

>

>

> I am going to try your other email.....

>

>

>

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

>

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Guest guest

,

What part of Washington? I am in Vancouver.

hi

> I sure hope this one works....lol

>

>

> I am trying to figure this out, and chat back and forth with you...I wish

it

> would just go to your home email. too bad.

>

> Anyway, I am 28, I live in Washington, and I am wanting to have this

surgery

> done Lap. I was looking into where to have it, and then realized that it

is

> going to be a lot of travel and expense.

>

>

>

> I am going to try your other email.....

>

>

>

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

>

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Guest guest

,

What part of Washington? I am in Vancouver.

hi

> I sure hope this one works....lol

>

>

> I am trying to figure this out, and chat back and forth with you...I wish

it

> would just go to your home email. too bad.

>

> Anyway, I am 28, I live in Washington, and I am wanting to have this

surgery

> done Lap. I was looking into where to have it, and then realized that it

is

> going to be a lot of travel and expense.

>

>

>

> I am going to try your other email.....

>

>

>

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

>

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Guest guest

Not to butt in but we got a hotel for a week in Fairfax for $40 a

night through priceline.com. The hotel is a 2 star hotel, so it

isn't the Ritz Carlton, but I think it will be ok. They have a

recliner in the room that turns into a bed too. (For those of you

who prefer to sleep sitting up after the surgery.) My surgery with

Dr. E is April 12th. Pre-tested, pre-insured and ready to go!

BMI42

w/co-morbids

surgery 4/12/01

Dr. Elariny

Trigon BC/BS Key Advantage

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Guest guest

Not to butt in but we got a hotel for a week in Fairfax for $40 a

night through priceline.com. The hotel is a 2 star hotel, so it

isn't the Ritz Carlton, but I think it will be ok. They have a

recliner in the room that turns into a bed too. (For those of you

who prefer to sleep sitting up after the surgery.) My surgery with

Dr. E is April 12th. Pre-tested, pre-insured and ready to go!

BMI42

w/co-morbids

surgery 4/12/01

Dr. Elariny

Trigon BC/BS Key Advantage

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Guest guest

Not to butt in but we got a hotel for a week in Fairfax for $40 a

night through priceline.com. The hotel is a 2 star hotel, so it

isn't the Ritz Carlton, but I think it will be ok. They have a

recliner in the room that turns into a bed too. (For those of you

who prefer to sleep sitting up after the surgery.) My surgery with

Dr. E is April 12th. Pre-tested, pre-insured and ready to go!

BMI42

w/co-morbids

surgery 4/12/01

Dr. Elariny

Trigon BC/BS Key Advantage

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Guest guest

Oh, dear, I suppose I'll have to call my Neurologist regarding the baby

aspirin I take daily in conjunction with my stroke medicatioin. Thanks!

LOL, Judy

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  • 1 year later...
Guest guest

Connie:

Now that you've open this door to our house and family here on the list, don't you feel alittle better? It's a nice feeling to know that someone else understands what you are up against. We have no cure, there isn't one as yet, but we can try and put a smile on your face when you are down and give you some answer to questions you have.

I know when I found this group a door was opened to me. The feeling of being lost and not having anyone else know this feeling or even understanding it was gone. I found other's who knew and boy do they know. From no answers to knowning so much more. I don't have the MSA, I'm the wife and caregiver to my husband Fred 61 DX in Oct of 98 after a year of looking for "What can it be? " Most of the time the answer was nothing? Wrong! it was something we found the doctor that knew, but then the thing was he didn't tell us much and we couldn't find much in the book store on it. At the time I didn't have a computer and didn't really think I needed one, now it's attached to my hip. I wouldn't live without one. Well maybe I could , but it wouldn't be as much fun.

I for one am very glad that you found this group. Tell us were you live and there maybe a support group close to you. That will be of great help to you and also your family. It's nice to meet other face to face that you can talk to and laugh with and be part of.

Right now I just wanted to say hi and if ever I can help you with a question , make you smile or just send a hug, just let me know.

Hugs

Vera

This is my first time here in a chat room on the

computer and it will be my first time since I have

been diagnosed a year ago to know or talk to anyone

with my same disease. I am so very excited on the one

hand because I have felt so alone with this disease.

On the other hand I feel so scared because it might be

way to much reality for me. Anyways I have had

symptoms for about seven years they were subtle and I

didn't pay much attention to them until two years ago

when my left side quit working. Then it took a year to

get diagnosed with MSA. My MSA seems to have

progressed very fast in the last two years and my

doctor is so depressing because he gives me no hope to

work with. I've dealt with a lot of losses in the last

two years. I've went from a totally healthy 45 year

old women to an old 95 year old woman in just two

years. Actually some 95 year old women probably get

around better than myself. The hardest thing for me is

that I have to depend on others for so much. I feel

like a burden sometimes to my husband and kids. I am

very grateful for all the wonderful friends and the

wonderful family I have. I could not handle this

horrible cruel mean disease with out there love and

support. I hope I'm not being way to dramatic but it

does seem cruel at times to me and cruel to my family

and friends who have to live with it. greercj

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Guest guest

Connie:

Now that you've open this door to our house and family here on the list, don't you feel alittle better? It's a nice feeling to know that someone else understands what you are up against. We have no cure, there isn't one as yet, but we can try and put a smile on your face when you are down and give you some answer to questions you have.

I know when I found this group a door was opened to me. The feeling of being lost and not having anyone else know this feeling or even understanding it was gone. I found other's who knew and boy do they know. From no answers to knowning so much more. I don't have the MSA, I'm the wife and caregiver to my husband Fred 61 DX in Oct of 98 after a year of looking for "What can it be? " Most of the time the answer was nothing? Wrong! it was something we found the doctor that knew, but then the thing was he didn't tell us much and we couldn't find much in the book store on it. At the time I didn't have a computer and didn't really think I needed one, now it's attached to my hip. I wouldn't live without one. Well maybe I could , but it wouldn't be as much fun.

I for one am very glad that you found this group. Tell us were you live and there maybe a support group close to you. That will be of great help to you and also your family. It's nice to meet other face to face that you can talk to and laugh with and be part of.

Right now I just wanted to say hi and if ever I can help you with a question , make you smile or just send a hug, just let me know.

Hugs

Vera

This is my first time here in a chat room on the

computer and it will be my first time since I have

been diagnosed a year ago to know or talk to anyone

with my same disease. I am so very excited on the one

hand because I have felt so alone with this disease.

On the other hand I feel so scared because it might be

way to much reality for me. Anyways I have had

symptoms for about seven years they were subtle and I

didn't pay much attention to them until two years ago

when my left side quit working. Then it took a year to

get diagnosed with MSA. My MSA seems to have

progressed very fast in the last two years and my

doctor is so depressing because he gives me no hope to

work with. I've dealt with a lot of losses in the last

two years. I've went from a totally healthy 45 year

old women to an old 95 year old woman in just two

years. Actually some 95 year old women probably get

around better than myself. The hardest thing for me is

that I have to depend on others for so much. I feel

like a burden sometimes to my husband and kids. I am

very grateful for all the wonderful friends and the

wonderful family I have. I could not handle this

horrible cruel mean disease with out there love and

support. I hope I'm not being way to dramatic but it

does seem cruel at times to me and cruel to my family

and friends who have to live with it. greercj

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Guest guest

Connie:

Now that you've open this door to our house and family here on the list, don't you feel alittle better? It's a nice feeling to know that someone else understands what you are up against. We have no cure, there isn't one as yet, but we can try and put a smile on your face when you are down and give you some answer to questions you have.

I know when I found this group a door was opened to me. The feeling of being lost and not having anyone else know this feeling or even understanding it was gone. I found other's who knew and boy do they know. From no answers to knowning so much more. I don't have the MSA, I'm the wife and caregiver to my husband Fred 61 DX in Oct of 98 after a year of looking for "What can it be? " Most of the time the answer was nothing? Wrong! it was something we found the doctor that knew, but then the thing was he didn't tell us much and we couldn't find much in the book store on it. At the time I didn't have a computer and didn't really think I needed one, now it's attached to my hip. I wouldn't live without one. Well maybe I could , but it wouldn't be as much fun.

I for one am very glad that you found this group. Tell us were you live and there maybe a support group close to you. That will be of great help to you and also your family. It's nice to meet other face to face that you can talk to and laugh with and be part of.

Right now I just wanted to say hi and if ever I can help you with a question , make you smile or just send a hug, just let me know.

Hugs

Vera

This is my first time here in a chat room on the

computer and it will be my first time since I have

been diagnosed a year ago to know or talk to anyone

with my same disease. I am so very excited on the one

hand because I have felt so alone with this disease.

On the other hand I feel so scared because it might be

way to much reality for me. Anyways I have had

symptoms for about seven years they were subtle and I

didn't pay much attention to them until two years ago

when my left side quit working. Then it took a year to

get diagnosed with MSA. My MSA seems to have

progressed very fast in the last two years and my

doctor is so depressing because he gives me no hope to

work with. I've dealt with a lot of losses in the last

two years. I've went from a totally healthy 45 year

old women to an old 95 year old woman in just two

years. Actually some 95 year old women probably get

around better than myself. The hardest thing for me is

that I have to depend on others for so much. I feel

like a burden sometimes to my husband and kids. I am

very grateful for all the wonderful friends and the

wonderful family I have. I could not handle this

horrible cruel mean disease with out there love and

support. I hope I'm not being way to dramatic but it

does seem cruel at times to me and cruel to my family

and friends who have to live with it. greercj

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Guest guest

Connie,

Hi, welcome to the group. You are not alone. Please do not hesitate to aske questions here, vent fustrations, or just converse. I was diagnosed with MSA two years ago myself and have already fought some of the battles you will fight. Many of the people in this group know the weapons that need to be used in order to get things done.

Write if you wish...

Dr. Ray

-- Hi

This is my first time here in a chat room on thecomputer and it will be my first time since I havebeen diagnosed a year ago to know or talk to anyonewith my same disease. I am so very excited on the onehand because I have felt so alone with this disease. On the other hand I feel so scared because it might beway to much reality for me. Anyways I have hadsymptoms for about seven years they were subtle and Ididn't pay much attention to them until two years agowhen my left side quit working. Then it took a year toget diagnosed with MSA. My MSA seems to haveprogressed very fast in the last two years and mydoctor is so depressing because he gives me no hope towork with. I've dealt with a lot of losses in the lasttwo years. I've went from a totally healthy 45 yearold women to an old 95 year old woman in just twoyears. Actually some 95 year old women probably getaround better than myself. The hardest thing for me isthat I have to depend on others for so much. I feellike a burden sometimes to my husband and kids. I amvery grateful for all the wonderful friends and thewonderful family I have. I could not handle thishorrible cruel mean disease with out there love andsupport. I hope I'm not being way to dramatic but itdoes seem cruel at times to me and cruel to my familyand friends who have to live with it. greercj__________________________________________________

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  • 3 weeks later...
Guest guest

Jeri,

sorry you were in the hospital so long. Glad to have you

back.

Kimber

--

Kimber

hominid2@...

Southwest Representative

Pancreatitis Association, International

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Guest guest

Jeri,

sorry you were in the hospital so long. Glad to have you

back.

Kimber

--

Kimber

hominid2@...

Southwest Representative

Pancreatitis Association, International

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Guest guest

Jeri,

sorry you were in the hospital so long. Glad to have you

back.

Kimber

--

Kimber

hominid2@...

Southwest Representative

Pancreatitis Association, International

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  • 2 months later...

Welcome! You'll find plenty of ears and eyes to listen and relate and give

as much info and daily " I know what you're going through " friends here on

this list. Best to you and your children. Love, Deranda

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Welcome Tana! We are glad to help however we can.

Lori in Florida, Mom to 3, 1wcf (Mycah age 5)

Hi

Hi,

my name is Tana and I am here for the very first time. I have two children -

Christian - 2 year old wocf and Miriam 14 mths old wcf. Miriam was diagnosed at

the age of 3 months. So far she is doing fine except for the fact that is not

really much into eating ......

I am looking forward to getting more information on new treatments etc. and

also would like to share my daily problems with other CF parents.

Greetings from Prague

Tana

---

Odchozí zpráva neobsahuje viry.

Zkontrolováno antivirovým systémem AVG (http://www.grisoft.cz).

Verze: 6.0.231 / Virová báze: 112 - datum vydání: 12.2.2001

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