thanks

[Guest guest]

Alba:

Here is one web-site that you can fine out more about SDS/MSA . Just post any questions you have here on this list and I'm sure other's will have an answer for you and I'll try to help where I can. I know Fred and I had alot of questions when he was first DX. One thing that we found out is to drink lots of water. People with MSA had problems with UTI's and this helps. Also they have lower then normal tempatures. Fred's run around 96.3. I'm not sure how they measure that in Paris and exercise, this helps. Once again just ask what yo'd like to know.

Shy-Drager syndrome. | ahealthyme.com

God Bless

Vera

**************************************

Subject: Thanks

Thanks Vera,

I think i am on the good group.

I think that french patients are on this group : I can speak

french..but it's a good think also.I must write in english if I want

and if I can!!

I have many questions .. Many..

Alba

[Guest guest]

Alba:

Here is one web-site that you can fine out more about SDS/MSA . Just post any questions you have here on this list and I'm sure other's will have an answer for you and I'll try to help where I can. I know Fred and I had alot of questions when he was first DX. One thing that we found out is to drink lots of water. People with MSA had problems with UTI's and this helps. Also they have lower then normal tempatures. Fred's run around 96.3. I'm not sure how they measure that in Paris and exercise, this helps. Once again just ask what yo'd like to know.

Shy-Drager syndrome. | ahealthyme.com

God Bless

Vera

**************************************

Subject: Thanks

Thanks Vera,

I think i am on the good group.

I think that french patients are on this group : I can speak

french..but it's a good think also.I must write in english if I want

and if I can!!

I have many questions .. Many..

Alba

[Guest guest]

Alba,

If you need to write in french, I know a french lady that could translate.

Ray

Thanks

> Thanks Vera,

> I think i am on the good group.

> I think that french patients are on this group : I can speak

> french..but it's a good think also.I must write in english if I want

> and if I can!!

> I have many questions .. Many..

> Alba

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Alba,

If you need to write in french, I know a french lady that could translate.

Ray

Thanks

> Thanks Vera,

> I think i am on the good group.

> I think that french patients are on this group : I can speak

> french..but it's a good think also.I must write in english if I want

> and if I can!!

> I have many questions .. Many..

> Alba

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Alba,

If you need to write in french, I know a french lady that could translate.

Ray

Thanks

> Thanks Vera,

> I think i am on the good group.

> I think that french patients are on this group : I can speak

> french..but it's a good think also.I must write in english if I want

> and if I can!!

> I have many questions .. Many..

> Alba

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Dear Aletta: I am thinking about your son's plight and the pain you

must be having because of that. I hope things will ease for you

soon. Lou R.At 09:40 PM 3/24/2002 -0800, you wrote:

Thanks for the kindness in our

response to my bad time. I hauled myself to the hospital (about 1

hour by public transit). My son was still in the hallway on a

stretcher and in restraints. He was very sedated. Asked me for some

sweets. Got him Gatorade chocolate and Jelly Babies. Not clear why anyone

would have him dragged out of church when he's not done anything wrong.

Upset that he's not safe even on holy ground. Can't understand why they

took him in (he was holding a small Nepalese three sided dagger, used

ceremonially for slaying dragons, which represents safety from demons to

him), I told him he should be grateful he's not facing a weapons

charge. He was still parked in the hallway when I got there, later he was

moved to a private room in Emergency, there is still no room in

psychiatric. No doctor was available to speak with. I'll go back to see

him tomorrow. The only thing worse than an HMO is when you let the

government run your HMO

About the blueberries; funny how a person reacts to single foods (maybe

amplified with MSA?) Peanuts get me at times when all other

laxatives have failed. Nothing promotes diarrhea more than

vegetables, the less cooked or worse.

A secretary or administrator of some kind would most likely take more

stress from me than even a housekeeper. I cannot keep in my head

who to call what to pay, chronology is particularly hard. Much of

the time I know something needs to be done just not sure what. I

forgotten to pay bills, overpaid them, and miss appointments reliably by

exactly 24 hours (either way). Not that I am daft or demented, it

just doesn't want to process and with no one around to give me reminders

it can get really piled up, with me overwhelmed. Stress is about

the worst thing. Most damaging physically is that I forget

completely to eat or use the washroom, and wonder why I might feel

odd. Color coded pill boxes with time to be taken messages written

right on them keep my meds straight most of the time.

Have not seen any change in bowels since taking calcium antagonist, but

then with upsets this weekend, it would be unrealistic to make any

judgements.

aletta mes, vancouver, bc canada

http://www.aletta.0catch.com

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Dear Aletta: I am thinking about your son's plight and the pain you

must be having because of that. I hope things will ease for you

soon. Lou R.At 09:40 PM 3/24/2002 -0800, you wrote:

Thanks for the kindness in our

response to my bad time. I hauled myself to the hospital (about 1

hour by public transit). My son was still in the hallway on a

stretcher and in restraints. He was very sedated. Asked me for some

sweets. Got him Gatorade chocolate and Jelly Babies. Not clear why anyone

would have him dragged out of church when he's not done anything wrong.

Upset that he's not safe even on holy ground. Can't understand why they

took him in (he was holding a small Nepalese three sided dagger, used

ceremonially for slaying dragons, which represents safety from demons to

him), I told him he should be grateful he's not facing a weapons

charge. He was still parked in the hallway when I got there, later he was

moved to a private room in Emergency, there is still no room in

psychiatric. No doctor was available to speak with. I'll go back to see

him tomorrow. The only thing worse than an HMO is when you let the

government run your HMO

About the blueberries; funny how a person reacts to single foods (maybe

amplified with MSA?) Peanuts get me at times when all other

laxatives have failed. Nothing promotes diarrhea more than

vegetables, the less cooked or worse.

A secretary or administrator of some kind would most likely take more

stress from me than even a housekeeper. I cannot keep in my head

who to call what to pay, chronology is particularly hard. Much of

the time I know something needs to be done just not sure what. I

forgotten to pay bills, overpaid them, and miss appointments reliably by

exactly 24 hours (either way). Not that I am daft or demented, it

just doesn't want to process and with no one around to give me reminders

it can get really piled up, with me overwhelmed. Stress is about

the worst thing. Most damaging physically is that I forget

completely to eat or use the washroom, and wonder why I might feel

odd. Color coded pill boxes with time to be taken messages written

right on them keep my meds straight most of the time.

Have not seen any change in bowels since taking calcium antagonist, but

then with upsets this weekend, it would be unrealistic to make any

judgements.

aletta mes, vancouver, bc canada

http://www.aletta.0catch.com

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Dear Aletta: I am thinking about your son's plight and the pain you

must be having because of that. I hope things will ease for you

soon. Lou R.At 09:40 PM 3/24/2002 -0800, you wrote:

Thanks for the kindness in our

response to my bad time. I hauled myself to the hospital (about 1

hour by public transit). My son was still in the hallway on a

stretcher and in restraints. He was very sedated. Asked me for some

sweets. Got him Gatorade chocolate and Jelly Babies. Not clear why anyone

would have him dragged out of church when he's not done anything wrong.

Upset that he's not safe even on holy ground. Can't understand why they

took him in (he was holding a small Nepalese three sided dagger, used

ceremonially for slaying dragons, which represents safety from demons to

him), I told him he should be grateful he's not facing a weapons

charge. He was still parked in the hallway when I got there, later he was

moved to a private room in Emergency, there is still no room in

psychiatric. No doctor was available to speak with. I'll go back to see

him tomorrow. The only thing worse than an HMO is when you let the

government run your HMO

About the blueberries; funny how a person reacts to single foods (maybe

amplified with MSA?) Peanuts get me at times when all other

laxatives have failed. Nothing promotes diarrhea more than

vegetables, the less cooked or worse.

A secretary or administrator of some kind would most likely take more

stress from me than even a housekeeper. I cannot keep in my head

who to call what to pay, chronology is particularly hard. Much of

the time I know something needs to be done just not sure what. I

forgotten to pay bills, overpaid them, and miss appointments reliably by

exactly 24 hours (either way). Not that I am daft or demented, it

just doesn't want to process and with no one around to give me reminders

it can get really piled up, with me overwhelmed. Stress is about

the worst thing. Most damaging physically is that I forget

completely to eat or use the washroom, and wonder why I might feel

odd. Color coded pill boxes with time to be taken messages written

right on them keep my meds straight most of the time.

Have not seen any change in bowels since taking calcium antagonist, but

then with upsets this weekend, it would be unrealistic to make any

judgements.

aletta mes, vancouver, bc canada

http://www.aletta.0catch.com

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Dear :

I am so sorry for the day that you have had and poor Warren too. I hope that

you have not taken the things that he said to you too personally. As you

said, never in his right mind would he say such things. I would think that

being deprived of liquids would dehydrate him and maybe cause some changes in

his behavior. You know that they always hurt the one they love. Maybe you

should take the time to have yourself a good cry, it can't hurt. Be sure that

many people here on this list are praying for you and Warren and hope that

they figure something out with him soon.

Love,

Jean & Chrissie

[Guest guest]

, I am sorry that Warren is having to go through this (you, too). Things

shouldn't be this hard. I hope all goes well with the colonoscopy--my

husband said the preparation for that was not fun. I cannot imagine what it

is like for someone with MSA. Hang in there and I hope tomorrow is better,

Debbie

[Guest guest]

,

I am so sorry that you are Warren are being put through so much more

than you should be. I know that it is so hard on the both of you.

, if you feel like crying go ahead and cry. Anyone who tells you

crying doesn't help is wrong. I think it does help sometimes. It at

least lets go of some of the stress you are feeling.

God Bless,

Belinda

> Hi, Thanks to all that responded to my mail last night. They

still haven't

> done the colonoscopy on Warrem as the nurses (I guess) did not

clean his

> bowel out thoroughly, so this afternoon they are doing a laxative

process

> through the nose to make sure he is clean. Poor dear is so

confused. They

> had given him a sedative before doing the process and then couldn't

do it.

> He is thirsty and they can't give him anything until he has the new

process.

> He was so confused and angry that he started blaming me for all the

> problems. (Never in his right mind would he have said some of the

things he

> did) I finally left after he had gone to sleep so I might have a

little

> time to relax.

>

> Of course he doesn't look well or feel well and I just hate that he

has togo

> through all of this. Right now I could just roll up into a ball

and cry.

> Maybe I will.

>

> Thanks again,

> S.

[Guest guest]

,

I am so sorry that you are Warren are being put through so much more

than you should be. I know that it is so hard on the both of you.

, if you feel like crying go ahead and cry. Anyone who tells you

crying doesn't help is wrong. I think it does help sometimes. It at

least lets go of some of the stress you are feeling.

God Bless,

Belinda

> Hi, Thanks to all that responded to my mail last night. They

still haven't

> done the colonoscopy on Warrem as the nurses (I guess) did not

clean his

> bowel out thoroughly, so this afternoon they are doing a laxative

process

> through the nose to make sure he is clean. Poor dear is so

confused. They

> had given him a sedative before doing the process and then couldn't

do it.

> He is thirsty and they can't give him anything until he has the new

process.

> He was so confused and angry that he started blaming me for all the

> problems. (Never in his right mind would he have said some of the

things he

> did) I finally left after he had gone to sleep so I might have a

little

> time to relax.

>

> Of course he doesn't look well or feel well and I just hate that he

has togo

> through all of this. Right now I could just roll up into a ball

and cry.

> Maybe I will.

>

> Thanks again,

> S.

[Guest guest]

Ann,

That is so sweet. I am glad you decided to keep each other after 51

1/2 years. It would be kind of hard and tiring to have to start

training another one all over again. It is so wonderful to see a

couple take care of each other through sickness and in health. There

are alot of wonderful couples on this message board. It is such a

blessing to see that also. I hope you are feeling better soon!

God bless,

Belinda

> I want to thank all that wished me well during this ordeal of a

nasty

> bug. I am going to try to really take it easy until I get well,

Poor Al

> is having to wait on me instead of me on him..He is such a jewel.

Think

> I'll keep him after 51 1/2 years its too late to change our mind.

>

> Ann from Soddy,TN

[Guest guest]

There is a short article about my doctor

at http://www.iptv.org/lii/featDetail.cfm?featNum=250

if anyone is interested. It kindof suprised me.

I always thought he was just an old man that talked funny.

incredible story!

thank u jon!

jack

[Guest guest]

Hi Libby,

I am in the USA. I bet Australia is just beautiful though! I have always wanted to visit there. Anyway, what you are doing to protect your child is great! My family and friends know that they are not allowed to have peanut or nut anything the day that they are going to be visiting with us. For the most part it is ok. I do get a lot of hassle though that I am over paranoid and that I need to loosen up but I don't. Peanuts/nuts are like arsenic to my child. I won't put him in danger lol. I think that is great that you sent a letter out to everyone to keep them aware of a danger of an allergy. You are a good mom! I hope that you are having a great day! Talk to you later!

Alyssa

Mom to -anaphylactic to peanuts, allergic to dairy and soy--has eczema

& - no known allergies

thanks

Hi girls!thanks for the welcome. It really is like being blindfolded at first so it's so encouraging to know there are others out there! I am in Sydney, Australia, although I'm actually from England originally. I imagine you are all US based..am I right?Today I sent 30 or so either an email or hard copy letter outlining the anaphylactic shock and all my expectations of friends and family..is telling them in no uncertain terms about cross contamination, foods he can have and can't have and the epipen. Did you all do that? I had a few bad experiences the few days after the shock where I told people what he could have and they thought they knew better. It's very hard isn't it. I feel awful asking people to do certain things which is ludicrous isn't it. It's the British person in me! I can feel myself withdrawing...or at least just having play dates at my house so I know he is safe. I suppose this is a normal reaction too is it?Tomorrow night I go to a support group for the first time which is daunting. I want to be in a group of like minded people but at the same time don't want to dwell..or make it worse. Did anyone else feel this?Anyway..got 4 kids to go and check (2 mine, 2 step!)love to all,Libby

[Guest guest]

> Anyway..got 4 kids to go and check (2 mine, 2 step!)

> love to all,

> Libby

Hey Liby I know just what you are going through. My son I don't think

other then the moms I have become friends with he doesn't go to there

houses. I feel a bit more relaxed but always on alerty kwim. O and I

feel totally withdrawn. Almost like everyone is talking about me and

the peanut allergy kid. But that may be the fact that I met a woman

who is crazy in town who told me I was going to have the hardest time

with this. Ugggg

Traci

[Guest guest]

Hi Grace,

Thanks for your beautiful post. I hope you're able to spend lots of time with

your mother this holiday season.

Holly,

I've missed all but the last few posts of whatever was going on, but I'm

happy to see that everything's resolved.

Happy Holidays to everyone in our special little Graves' family here, Elaine

[Guest guest]

Hi Grace,

Thanks for your beautiful post. I hope you're able to spend lots of time with

your mother this holiday season.

Holly,

I've missed all but the last few posts of whatever was going on, but I'm

happy to see that everything's resolved.

Happy Holidays to everyone in our special little Graves' family here, Elaine

[Guest guest]

No thanks Amy....I believe your sister and you have an extremely

close relationship, so I am glad that you can talk openly about this.

I think that is the most important.

I hope your sister and you will share many happy moments taking care

of baby in a few months and being able to remember her

angeldaughter.

love,

Ghislaine

> Elaine, Ghislaine, Taryn,

>

> Thank you all for your kind words in response to my sister. I

really appreciate all of your insight. It's funny because I am a

counselor by profession, however it's always harder to know what to

say when it's your own family. I have learned so much about grief,

loss, compassion and hope by reading everyone's postings over the

last several months. All of which has enriched me both personally

and professionally!!! My sister and I have had a chance to talk this

weekend and she echoed alot of the same sentiments Ghislaine shared.

Thank you! Thank you!

>

> Amy

[Guest guest]

No thanks Amy....I believe your sister and you have an extremely

close relationship, so I am glad that you can talk openly about this.

I think that is the most important.

I hope your sister and you will share many happy moments taking care

of baby in a few months and being able to remember her

angeldaughter.

love,

Ghislaine

> Elaine, Ghislaine, Taryn,

>

> Thank you all for your kind words in response to my sister. I

really appreciate all of your insight. It's funny because I am a

counselor by profession, however it's always harder to know what to

say when it's your own family. I have learned so much about grief,

loss, compassion and hope by reading everyone's postings over the

last several months. All of which has enriched me both personally

and professionally!!! My sister and I have had a chance to talk this

weekend and she echoed alot of the same sentiments Ghislaine shared.

Thank you! Thank you!

>

> Amy

[Guest guest]

No thanks Amy....I believe your sister and you have an extremely

close relationship, so I am glad that you can talk openly about this.

I think that is the most important.

I hope your sister and you will share many happy moments taking care

of baby in a few months and being able to remember her

angeldaughter.

love,

Ghislaine

> Elaine, Ghislaine, Taryn,

>

> Thank you all for your kind words in response to my sister. I

really appreciate all of your insight. It's funny because I am a

counselor by profession, however it's always harder to know what to

say when it's your own family. I have learned so much about grief,

loss, compassion and hope by reading everyone's postings over the

last several months. All of which has enriched me both personally

and professionally!!! My sister and I have had a chance to talk this

weekend and she echoed alot of the same sentiments Ghislaine shared.

Thank you! Thank you!

>

> Amy

[Guest guest]

Kent

My son's name is Kent. You don't hear it much.

Cleveland Clinic is probably the closest place to you who does fresh

biopsies. The lab people have to be in the operating room to receive

the muscle and whisk it away to the lab and work on it immediately.

There aren't many places that do this. I live in MI and had to go to

Atlanta as Cleveland Clinic wasn't doing them yet. These places

usually divide the muscle into three parts - one to work on fresh, one

to freeze for electron microscope testing which includes staining and

one to freeze for later testing if more testing is developed. Blood

work and urine workup are usually a part of the early testing. A few,

very few, types of mito can be found with only a genetic look in a

bloood sample.

laurie

> thanks Laurie, Barbara and Hazel for your info and encouragement.

> so it seems i need to talk to the doc doing the biopsy about enzyme

> assays on a fresh sample as well as COX, SDH and gamouri staining.

> does that sound right? is there a good pathologist here in illinois?

> kent

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Thanks all for the congrats on my losing this week, have to give credit to changing up the walking and to not eating late at night also. I have started doing Swedish Weaving and that keeps my hands busy so can't eat while doing it, and when I put it down its too late . It is such a great feeling to get up in the mornings and know that I haven't eaten something I shouldn't have. Just finished a twin size blanket and have to get another one ready to work on this weekend since it is going to be bad weather. Make some taco soup and watch the olympics and weave, sounds good to me.

For all those that are still weighing in this week, good luck .

Hugs,

Jackie

[Guest guest]



Walt... what a laugh this morning!

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

THANKS

You may be able to help me. As always, when I need advice or counsel I turn to my most trusted friends. I do this because I know you will always be candid and honest with me. I need your opinion on something that has been bothering me for some time now. I am counting on you so please don't let our long lasting friendship influence your answer. Thanks in advance!

SCROLL DOWN PLEASE

Does this bikini make my butt look too big???

Hope this put a smile

on your face!

BLESSED ARE THE CRACKED,

FOR THEY ARE THE ONES WHO LET IN THE LIGHT!

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€