Advice Needed

[Guest guest]

Three weeks is not a long trial. Also, screen ingredients carefully

for gluten & casein. Some cereals, for example, are dusted with

wheat, but that's not shown on the label. Some " dairy-free " products

contain sodium caseinate (which is casein). See www.gfcfdiet.com for

safe & unsafe product lists. Absolutely screen for celiac disease.

Also, the ELISA (IgG) blood test will give you a better idea of his

food intolerances. Many of our kids have food reactions (but not

necessarily allergies) in addition to gluten and casein problems.

HI

>

> I am having a consult with my sons ped tomorrow and need advice.

He

> is 9 and high functioning autistic. I had his peptid test done at

> alletess and they showed he was intolerant to gluten and casein. We

> have been trying the diet for about 3 wks. I have seen no change,

> but am not positive he is not getting gluten. What other tests

> should I see if the dr will order. Also, we have recently found

out family members have celiac. Should he be screened for this?

[Guest guest]

Well my mail box says that I have 180 messages to catch up on. Before I go

and read all that has been happening to you guys and gals, I wanted to let

you know of my past week with doctors and disease. LOL.

The results from my Glucose PET scan came in. The neuro-radiologist was not

" qualified " to read it. He has been trained in Alzheimer's, seizure

disorders and tumors. His report stated that the source of my seizures

could not be located. HA! I haven't had a seizure since January 26th.

did some calling all across the country and we have an apt. with yet

another movement disorder specialist in ton, S.C. (about a 5 hour

drive for us) on August 19th. talked to the radiology dept. and they

CAN read a glucose PET to determine the extent of the MSA. More waiting.

Yesterday, I saw a neuro-ophthalmologist. He said that my eyes are " normal "

but the degeneration of my brain stem is causing my eyes to be misaligned.

That is why I have trouble focusing on things and have intermittent double

vision. He has written a prescription for glasses with prisms. He thinks

that this should help for about 6 months. He said that people with brain

stem problems usually have to have stronger prisms about that often. No

glaucoma, no cataracts. In 6 months, my left eye has gone from -2.0 to -3.0

and my right eye has gone from -2.25 to -2.75.

My batter and intestines are giving me fits. I am taking a fiber pill now

but have yet to find relief. My batter feels like I am going to wet my

pants at any given moment, only to make it to the bathroom and only have to

go a teaspoon or two. Frustrating.

is feeling the frustration of taking care of me too. He is so busy

trying to find a cure that I feel left alone to fight this battle. He says

he can't stand seeing me suffer and knows that there is someone somewhere

that can make me better. I keep asking him to please stop, we fought a good

fight and I need him here with me in the present instead of dragging me from

doctor to doctor only to be told the same thing over and over again. I'm

tired and I hurt and I want some peace. I don't know how to get him to

understand this... I don't know how to get him to accept what is happening

to me.

I'll admit. I am doctor/nurse/hospital phobic now. I have no veins that

function properly and have to be stuck 3 -5 times just to get enough blood

for a blood test. Forget about keeping a vein in one place to be

administered fluid or dye for testing.. the veins blow. I'm left with

bruises that don't heal quickly and phlebitis (spelling). I don't want to

be tortured any more. How do I get him to accept this. I don't want

anymore violent intrusion on my body, I don't want any more hospitals and

procedures. Every time I go, they just make me worse or if tests are done,

they just tell us the same thing over and over and over and over.

Yes, I'm a little depressed. I am taking something for it and it helps but

at times I am just overwhelmed. How do I get the one I love to understand

what it is like for me? I'm not going to wake up one day and be well. At

present, I'm not on any waiting list for a miracle cure. I need some help

folks. I need help in getting to understand. I know he wants me to

keep fighting but I'm tired. Does this make any sense to anyone? Please

let me know.

Well, now I have 186 emails to be read. Thanks for being there to listen.

Hugs,

Deborah aka Tenacity

_________________________________________________________________

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[Guest guest]

Deborah-

You've probably thought of this, but is there a relative or friend or

counsellor who knows both of you and has particular credibility with

? Sometimes a sensitive intermediary can help get through and

capture 's attention in ways that you can't because you're so

close. His focus on helping you is of course understandable, but it

might blind him to what your needs really are now.

Anyway, just a thought. I feel for you.

Tony

in Boston

> Well my mail box says that I have 180 messages to catch up on.

Before I go

> and read all that has been happening to you guys and gals, I wanted

to let

> you know of my past week with doctors and disease. LOL.

>

> The results from my Glucose PET scan came in. The neuro-

radiologist was not

> " qualified " to read it. He has been trained in Alzheimer's,

seizure

> disorders and tumors. His report stated that the source of my

seizures

> could not be located. HA! I haven't had a seizure since January

26th.

> did some calling all across the country and we have an apt.

with yet

> another movement disorder specialist in ton, S.C. (about a 5

hour

> drive for us) on August 19th. talked to the radiology dept.

and they

> CAN read a glucose PET to determine the extent of the MSA. More

waiting.

>

> Yesterday, I saw a neuro-ophthalmologist. He said that my eyes

are " normal "

> but the degeneration of my brain stem is causing my eyes to be

misaligned.

> That is why I have trouble focusing on things and have intermittent

double

> vision. He has written a prescription for glasses with prisms. He

thinks

> that this should help for about 6 months. He said that people with

brain

> stem problems usually have to have stronger prisms about that

often. No

> glaucoma, no cataracts. In 6 months, my left eye has gone from -

2.0 to -3.0

> and my right eye has gone from -2.25 to -2.75.

>

> My batter and intestines are giving me fits. I am taking a fiber

pill now

> but have yet to find relief. My batter feels like I am going to

wet my

> pants at any given moment, only to make it to the bathroom and only

have to

> go a teaspoon or two. Frustrating.

>

> is feeling the frustration of taking care of me too. He is

so busy

> trying to find a cure that I feel left alone to fight this battle.

He says

> he can't stand seeing me suffer and knows that there is someone

somewhere

> that can make me better. I keep asking him to please stop, we

fought a good

> fight and I need him here with me in the present instead of

dragging me from

> doctor to doctor only to be told the same thing over and over

again. I'm

> tired and I hurt and I want some peace. I don't know how to get

him to

> understand this... I don't know how to get him to accept what is

happening

> to me.

>

> I'll admit. I am doctor/nurse/hospital phobic now. I have no

veins that

> function properly and have to be stuck 3 -5 times just to get

enough blood

> for a blood test. Forget about keeping a vein in one place to be

> administered fluid or dye for testing.. the veins blow. I'm left

with

> bruises that don't heal quickly and phlebitis (spelling). I don't

want to

> be tortured any more. How do I get him to accept this. I don't

want

> anymore violent intrusion on my body, I don't want any more

hospitals and

> procedures. Every time I go, they just make me worse or if tests

are done,

> they just tell us the same thing over and over and over and over.

>

> Yes, I'm a little depressed. I am taking something for it and it

helps but

> at times I am just overwhelmed. How do I get the one I love to

understand

> what it is like for me? I'm not going to wake up one day and be

well. At

> present, I'm not on any waiting list for a miracle cure. I need

some help

> folks. I need help in getting to understand. I know he

wants me to

> keep fighting but I'm tired. Does this make any sense to anyone?

Please

> let me know.

>

> Well, now I have 186 emails to be read. Thanks for being there to

listen.

>

> Hugs,

> Deborah aka Tenacity

>

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Deborah,

Some advice, get off fiber pills they do not work well for most people. Use the

Metamucil or Citrocel mixed with juice instead. Often the pills will not

dissolve in the stomach and the fiber must mix with liquid before it can move

like it is supposed to. Mixing the fiber with liquid before it goes in is much

better.

The neuro-ophthalmologist is right, MSA patients often have one eye go faster

than the other. We have seen this time and again.

Actually, is correct. You MUST keep exercising to keep the movement you

have, otherwise you will lose it quicker. Our MOTTO is " Use it or lose it " .

Both speech and movement exercises need to be done every day. If you stop

exercising you will lose movement in a year or less. You may not be able to

stop the disease, but you CAN slow the progress. Your muscles can still work

even though your brain is tired.

Take care, Bill Werre

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

Deborah Setzer wrote:

> Yes, I'm a little depressed. I am taking something for it and it helps but

> at times I am just overwhelmed. How do I get the one I love to understand

> what it is like for me? I'm not going to wake up one day and be well. At

> present, I'm not on any waiting list for a miracle cure. I need some help

> folks. I need help in getting to understand. I know he wants me to

> keep fighting but I'm tired. Does this make any sense to anyone? Please

> let me know.

>

> Hugs,

> Deborah aka Tenacity

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

still has to fight for a miracle because he hasn't yet really

accepted that you may die. I know that I fought somewhat longer than Ken

wanted me to, and sometimes my hunting and fighting for something that would

make him better did really make him better for a while. I remember one doctor

saying if it was her body, she would be on the next plane to Europe. I had

brought her the material I had gathered on the use of Selegilene in Europe,

and it was not yet available here. Ken just said he wouldn't go. The doctor

finally was able to contact a doctor in Europe, and we got the medication,

but I had to be the one who insisted. Ken was one of the ones who showed

wonderful results from Selegilene which is now called Eldepryl and used a lot

here. I cannot tell you how to get to relax and enjoy you now as you

are. I do know that somewhere along the way, I began to let go of having to

" fix " Ken and began to just appreciate what we did have left together. I

think this is harder for men to do than women because men always seem to

think they can find a solution to anything. I remember when Ken and I had

disagreements, he would ask what I wanted him to " do " about it, and all I

wanted was for him to understand how I felt. You are fortunate to have

someone who cares so much about you, and perhaps you can use that caring to

get him to tune in a little more to what you really need from him right now.

I seem to have rambled on a bit here. Feel free to write me off line if you

want to " talk. "

Love, Barbara

[Guest guest]

Well, Tenacity, there it is, just as I said. Men react differently than

women. I answered your note trying to help you by listening to how you felt,

and Bill answered it by explaining why you had to keep fighting. Both of us

were trying to help you, but he is a man and I am a woman, and we answered

rather typically for our sex. You do have to ask directly for what you

want from him and not expect that he will just know. Perhaps he will begin to

understand that you do call yourself Tenacity for a reason, and that when you

need a little respite from the constant running to doctors, it does not mean

you are completely giving up. We all need a little vacation from time to

time; that does not mean we are going to run away from what we know we have

to do.

hugs and love, Barbara

[Guest guest]

Hi all,

I agree with Barbara , she read it as you wanted a break from seeing

doctors

and I read it as you wanted a break from fighting the disease. That well could

be a difference between men and women. If you are tired of seeing doctors, I

agree with Barbara that you should be the one to decide what is enough.

They can experiment with drugs and possibly find one that can help you at times.

You must work with them to fine tune the drugs and if you do not want to be

bothered, that is your decision. Be aware that your husband and family care for

you and want you around as long as possible. There is always hope for a cure.

Talk it over with your husband and family. This should be a time for

communication and decisions for everyone. I always suggest grief counseling for

the whole family as it helped us make decisions early in the disorder.

Take care, Bill Werre

==================================================

kmcrae@... wrote:

> Well, Tenacity, there it is, just as I said. Men react differently than

> women. I answered your note trying to help you by listening to how you felt,

> and Bill answered it by explaining why you had to keep fighting. Both of us

> were trying to help you, but he is a man and I am a woman, and we answered

> rather typically for our sex. You do have to ask directly for what you

> want from him and not expect that he will just know. Perhaps he will begin to

> understand that you do call yourself Tenacity for a reason, and that when you

> need a little respite from the constant running to doctors, it does not mean

> you are completely giving up. We all need a little vacation from time to

> time; that does not mean we are going to run away from what we know we have

> to do.

> hugs and love, Barbara

[Guest guest]

Bill,

If I remember correctly, after I had just joined the group a patient was

wanting to locate more specialists for more tests to try and find a cure. I

think that you as well as others suggested that since a cure does not exist

at this time and with no cure in sight in the immediate future, efforts

would be better spent in finding a doctor that would work with the patient

in controlling the symptoms.

The way I interpret Deborah's original note is that this is actually what

she is wanting to do. But her husband wants to continue sending her to more

doctors for more tests. Have you changed your viewpoint on this, or have I

misinterpreted your previous message?

I agree with Deborah, it may me time to slow down, re-evaluate goals and

regroup, and concentrate on managing the symptoms as well as possible.

Jim Parsons

Re: Advice Needed

Hi all,

I agree with Barbara , she read it as you wanted a break from seeing

doctors

and I read it as you wanted a break from fighting the disease. That well

could

be a difference between men and women. If you are tired of seeing doctors,

I

agree with Barbara that you should be the one to decide what is

enough.

They can experiment with drugs and possibly find one that can help you at

times.

You must work with them to fine tune the drugs and if you do not want to be

bothered, that is your decision. Be aware that your husband and family care

for

you and want you around as long as possible. There is always hope for a

cure.

Talk it over with your husband and family. This should be a time for

communication and decisions for everyone. I always suggest grief counseling

for

the whole family as it helped us make decisions early in the disorder.

Take care, Bill Werre

==================================================

kmcrae@... wrote:

> Well, Tenacity, there it is, just as I said. Men react differently than

> women. I answered your note trying to help you by listening to how you

felt,

> and Bill answered it by explaining why you had to keep fighting. Both of

us

> were trying to help you, but he is a man and I am a woman, and we answered

> rather typically for our sex. You do have to ask directly for what

you

> want from him and not expect that he will just know. Perhaps he will begin

to

> understand that you do call yourself Tenacity for a reason, and that when

you

> need a little respite from the constant running to doctors, it does not

mean

> you are completely giving up. We all need a little vacation from time to

> time; that does not mean we are going to run away from what we know we

have

> to do.

> hugs and love, Barbara

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Deborah, Barbara and Bill,

Have you guys read " Men are from Mars and Women are from Venus " ? Maybe we

need a follow - up Mars and Venus and Serious Chronic Illness.

Men and women do process all this stuff differently -- both in different

ways and on different time lines. I wish I could add some words of wisdom

but I can't. Just hang on to each other and cry once in a while. It helps

to do that without trying to use words.

Carol & Rob

in hot and sticky Lexington, MA

Re: Advice Needed

> Well, Tenacity, there it is, just as I said. Men react differently than

> women. I answered your note trying to help you by listening to how you

felt,

> and Bill answered it by explaining why you had to keep fighting. Both of

us

> were trying to help you, but he is a man and I am a woman, and we answered

> rather typically for our sex. You do have to ask directly for what

you

> want from him and not expect that he will just know. Perhaps he will begin

to

> understand that you do call yourself Tenacity for a reason, and that when

you

> need a little respite from the constant running to doctors, it does not

mean

> you are completely giving up. We all need a little vacation from time to

> time; that does not mean we are going to run away from what we know we

have

> to do.

> hugs and love, Barbara

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Jim,

Yes, I still believe it is better to try to control the symptoms than worry

about the exact diagnoses. But you should make sure it is not something which

is known and curable such as

Chiari. This is something which is an individual decision and I think everyone

has to determine this for themself. I would be the last to try to make that

decision for someone else. We

spent five years getting a diagnoses which made sense (PD in 1990 and MSA in

1995 - at NIH) then we concentrated on managing the best we could.

Deborah,

Can you clear up this discussion for us. What exactly do you want? What does

want? If the two of you talk it out, let us know what is going on. We

are all confused as you can see.

Take care, Bill Werre

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

Jim Parsons wrote:

> Bill,

>

> If I remember correctly, after I had just joined the group a patient was

> wanting to locate more specialists for more tests to try and find a cure. I

> think that you as well as others suggested that since a cure does not exist

> at this time and with no cure in sight in the immediate future, efforts

> would be better spent in finding a doctor that would work with the patient

> in controlling the symptoms.

>

> The way I interpret Deborah's original note is that this is actually what

> she is wanting to do. But her husband wants to continue sending her to more

> doctors for more tests. Have you changed your viewpoint on this, or have I

> misinterpreted your previous message?

>

> I agree with Deborah, it may me time to slow down, re-evaluate goals and

> regroup, and concentrate on managing the symptoms as well as possible.

>

> Jim Parsons

>

> Re: Advice Needed

>

> Hi all,

>

> I agree with Barbara , she read it as you wanted a break from seeing

> doctors

> and I read it as you wanted a break from fighting the disease. That well

> could

> be a difference between men and women. If you are tired of seeing doctors,

> I

> agree with Barbara that you should be the one to decide what is

> enough.

> They can experiment with drugs and possibly find one that can help you at

> times.

> You must work with them to fine tune the drugs and if you do not want to be

> bothered, that is your decision. Be aware that your husband and family care

> for

> you and want you around as long as possible. There is always hope for a

> cure.

>

> Talk it over with your husband and family. This should be a time for

> communication and decisions for everyone. I always suggest grief counseling

> for

> the whole family as it helped us make decisions early in the disorder.

>

> Take care, Bill Werre

>

> ==================================================

>

> kmcrae@... wrote:

>

> > Well, Tenacity, there it is, just as I said. Men react differently than

> > women. I answered your note trying to help you by listening to how you

> felt,

> > and Bill answered it by explaining why you had to keep fighting. Both of

> us

> > were trying to help you, but he is a man and I am a woman, and we answered

> > rather typically for our sex. You do have to ask directly for what

> you

> > want from him and not expect that he will just know. Perhaps he will begin

> to

> > understand that you do call yourself Tenacity for a reason, and that when

> you

> > need a little respite from the constant running to doctors, it does not

> mean

> > you are completely giving up. We all need a little vacation from time to

> > time; that does not mean we are going to run away from what we know we

> have

> > to do.

> > hugs and love, Barbara

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

[Guest guest]

Werre wrote:

>

> Deborah,

>

> Some advice, get off fiber pills they do not work well for most people. Use

the

> Metamucil or Citrocel mixed with juice instead. Often the pills will not

> dissolve in the stomach and the fiber must mix with liquid before it can move

> like it is supposed to. Mixing the fiber with liquid before it goes in is

much

> better.

DEBORAH--

NANCY FROM CLEVELAND .

1) CONSTIPATION PROBLEMS??- I LEARNED ABOUT

MIRALAX HERE.

STOOL SOFTENERS?

FLUIDS- I KNOW THEN PEE MORE. SIT ON THE TOILET WITH MY FEET ON A STOOL

AND DRINK SOMETIMES, CAUSE IT TAKES ME SO LONG TO EMPTY MY BLADDER. TOO

TIRING TO GET UP AND DOWN OFF THE COMMODE!

>

> The neuro-ophthalmologist is right, MSA patients often have one eye go faster

> than the other. We have seen this time and again.

>

> Actually, is correct. You MUST keep exercising to keep the movement

you

> have, otherwise you will lose it quicker.

2)

A)GET MORE SLEEP AT NIGHT AND THIS HELPS ME ALITTLE DURING THE DAY. 5 -7

HOURS I SLEEP AND IF I AWAKE I LAY THERE WITH MY EYES CLOSED OF COURSE.

SOMETIMES I DOSE BACK AND OTHER TIMES NO.

B)THE COMPUTER WEARS MY EYES OUT LIKE ANYONE'S IN THIS WORLD.

1)ROTATE THOSE ANKLES AND WRISTS. THAT U CAN DO LAYING DOWN EVEN.

ROTATING TOO HARD SOMETIMES. POINT AND FLEX SLOWLY. HECK WE CAN'T GO

FAST. WHEN U ARE IN UR CHAIR WITH UR LEGS UP WITH PADDING BEHIND THE

CALVES, HAVE ROBERT POINT AND FLEX UR FEET IF U CAN'T. MOVE ANYTHING.

3) ASSISTANCE- ON THE TIMES U CAN GET UP FROM THE CHAIR. DO IT WITH

ASSISTANCE MAKE SURE SOMEONE IS THERE. WEAR RUBBER BOTTOM SOCKS OR GYM

SHOES ( EASY SPIRIT OR NEW BALANCE IS GREAT FABRIC TONGUES AS OPPOSE TO

LEATHER FEELS BETTER AND EXPANDS AND CONTRACT EASIER ON THE TOP OF MY

FEET).

4) ACCEPT THE GYM SHOES WITH DRESSES OR SKIRTS.

WEAR BRIGHT COLORS NEAR UR FACE.

I WEAR GYM SHORT SPANDEX AND TOPS - EASY FOR PEOPLE TO GET ON AND OFF

ME.

MUSCLE SLEEVELESS T'S FOR WHEN GOING IN PUBLIC PLACES.

THE COLOR THING HELPS BRIGHTEN UP ONES DAY AND OTHERS AROUND ME.

IT BEATS A HOSPITAL LOOKING OUTFIT.

EASY FOR ME TO HELP WHEN I AM FATIGUED,DEAD, WHATEVER

KMART AND TARGET

Our MOTTO is " Use it or lose it " .

5) TRY UNO CARD GME. BIG NUMBERS, COLORS, EASY TO COUNT, GOOD FOR SIMPLE

SPEECH (I.E WORD PRONOUNCED - UNO AND THE NUMBER AND COLOR U PUT DOWN.

ROBERT READ****

EXAMPLE- PUT THE CARDS FACE OUT ON THE TABLE OR A SEE THROUGH BOOK

HOLDER THAT IS NAILED DOWN (HEAVY DUTY VELCRO) SO IT WON'T TIP OVER.

PATIENT SLIDES OR PICKS UP A CARD AND PUTS ON THE TABLE. OR U CAN PUT

THE CARD SHE POINTS TO.

GOOD DAYS AND AT THE BEGINNING - PATIENT MAY BE ABLE TO SAY THE NUMBER,

COLOR, OR BOTH AND PUT IT DOWN. DEPENDS ON THE INDIVIDUAL PATIENT.

FATIGUE IS A BIG FACTOR . TRICK IS TO BALANCE THE GAME SO THEY DON'T

FATIGUE AS FAST.

HELPS IF THE CARGIVER ROTATES AND ANKLE MAYBE TO HELP THE MOVEMENT AND

PAIN FROM SITTING TOO LONG.

SMILE.

NANCY M.

> Both speech and movement exercises need to be done every day. If you stop

> exercising you will lose movement in a year or less. You may not be able to

> stop the disease, but you CAN slow the progress. Your muscles can still work

> even though your brain is tired.

>

> Take care, Bill Werre

>

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

>

> Deborah Setzer wrote:

>

> > Yes, I'm a little depressed. I am taking something for it and it helps but

> > at times I am just overwhelmed. How do I get the one I love to understand

> > what it is like for me? I'm not going to wake up one day and be well. At

> > present, I'm not on any waiting list for a miracle cure. I need some help

> > folks. I need help in getting to understand. I know he wants me to

> > keep fighting but I'm tired. Does this make any sense to anyone? Please

> > let me know.

> >

> > Hugs,

> > Deborah aka Tenacity

> >

> > _________________________________________________________________

> > MSN Photos is the easiest way to share and print your photos:

> > http://photos.msn.com/support/worldwide.aspx

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

[Guest guest]

To all, especially :

I agree with both Bill and Jim in their emails below.

Trying to beat MSA by finding a solution can devastating to the care giver.

One must accept the inevitability of this miserable disease and deal with

reality, namely the symptoms. I agree with Bill that counseling to learn

how to accept and deal with the inevitability has proven extremely

beneficial for me. MSA is a mess to be managed, not a problem to be solved.

I also support Carol and Rob's email below; men and women deal with this

stuff differently.

: I would be glad to discuss in detail my experience in coping with

Terry's MSA.

Message: 1

Date: Thu, 27 Jun 2002 18:19:41 -0400

Subject: Re: Advice Needed

Hi all,

I agree with Barbara , she read it as you wanted a break from seeing

doctors

and I read it as you wanted a break from fighting the disease. That well could

be a difference between men and women. If you are tired of seeing doctors, I

agree with Barbara that you should be the one to decide what is enough.

They can experiment with drugs and possibly find one that can help you at

times.

You must work with them to fine tune the drugs and if you do not want to be

bothered, that is your decision. Be aware that your husband and family care for

you and want you around as long as possible. There is always hope for a cure.

Talk it over with your husband and family. This should be a time for

communication and decisions for everyone. I always suggest grief counseling for

the whole family as it helped us make decisions early in the disorder.

Take care, Bill Werre

==================================================

kmcrae@... wrote:

> Well, Tenacity, there it is, just as I said. Men react differently than

> women. I answered your note trying to help you by listening to how you felt,

> and Bill answered it by explaining why you had to keep fighting. Both of us

> were trying to help you, but he is a man and I am a woman, and we answered

> rather typically for our sex. You do have to ask directly for

what you

> want from him and not expect that he will just know. Perhaps he will

begin to

> understand that you do call yourself Tenacity for a reason, and that

when you

> need a little respite from the constant running to doctors, it does not mean

> you are completely giving up. We all need a little vacation from time to

> time; that does not mean we are going to run away from what we know we have

> to do.

> hugs and love, Barbara

________________________________________________________________________

________________________________________________________________________

Message: 2

Date: Thu, 27 Jun 2002 18:38:08 -0500

Subject: RE: Advice Needed

Bill,

If I remember correctly, after I had just joined the group a patient was

wanting to locate more specialists for more tests to try and find a cure. I

think that you as well as others suggested that since a cure does not exist

at this time and with no cure in sight in the immediate future, efforts

would be better spent in finding a doctor that would work with the patient

in controlling the symptoms.

The way I interpret Deborah's original note is that this is actually what

she is wanting to do. But her husband wants to continue sending her to more

doctors for more tests. Have you changed your viewpoint on this, or have I

misinterpreted your previous message?

I agree with Deborah, it may me time to slow down, re-evaluate goals and

regroup, and concentrate on managing the symptoms as well as possible.

Jim Parsons

Message: 6

Date: Thu, 27 Jun 2002 21:20:07 -0400

Subject: Re: Advice Needed

Deborah, Barbara and Bill,

Have you guys read " Men are from Mars and Women are from Venus " ? Maybe we

need a follow - up Mars and Venus and Serious Chronic Illness.

Men and women do process all this stuff differently -- both in different

ways and on different time lines. I wish I could add some words of wisdom

but I can't. Just hang on to each other and cry once in a while. It helps

to do that without trying to use words.

Carol & Rob

in hot and sticky Lexington, MA

Sennewald Charlottesville, Virginia

[Guest guest]

Bill - Did you ever use Metamucil with the PEG tube? I have a fear of it expanding and clogging - probably stupid, as once it is through the tube and in the stomach it should be o.k., right? I've been thickening it and giving it to Bob with a spoon - but then I become concerned that it might expand and choke him - I've read that this is a possibility (with swallowing problems.) Just wanted your expert advice! Bowel movements are becoming more and more of a problem - give Aloe Vera juice, take stool softeners, prune juice and trying to incorporate one dose of metamucil each evening.

Thanks so much,

Elaine Grimmesey

[Guest guest]

Thanks, Carol - I wonder how this differs from the non-Rx stool softener (Ducoset? Can't think of the exact name) that Bob started taking when he was in the Rehabilitation Institute - just stronger? Because what we're using isn't doing a 100% job - or even a 60% job.

Thanks,

Elaine

[Guest guest]

Thank you!!! Good to know. I would think that there is the same possiblity of it thickening in the throat (Bob's a silent aspirator) before it reaches the stomach. This is very helpful information - I won't try it in the tube!

Elaine

[Guest guest]

Elaine,

I can't help with the PEG tube question, but I can recommend MiraLax. It is a powder which is mixed with water and forms a clear liquid. If acts to draw water to the bowel, so there's no problem with it expanding. It would certainly be safe to use with a PEG.

It is a prescription item, so you will have to ask your doctor for it.

Carol & Rob (who drinks a glass of MiraLax every night)

Lexington, MA

Re: Advice Needed

Bill - Did you ever use Metamucil with the PEG tube? I have a fear of it expanding and clogging - probably stupid, as once it is through the tube and in the stomach it should be o.k., right? I've been thickening it and giving it to Bob with a spoon - but then I become concerned that it might expand and choke him - I've read that this is a possibility (with swallowing problems.) Just wanted your expert advice! Bowel movements are becoming more and more of a problem - give Aloe Vera juice, take stool softeners, prune juice and trying to incorporate one dose of metamucil each evening. Thanks so much, Elaine Grimmesey If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Elaine, I tried Metamucil with a peg tube-geez what a mess, it was thick and gooey before I could get it in there. I use Enulose (prescript Lactulose) 2 Tbs every morning in the tube, seems to work fine.

Ginger

Re: Advice Needed

Bill - Did you ever use Metamucil with the PEG tube? I have a fear of it expanding and clogging - probably stupid, as once it is through the tube and in the stomach it should be o.k., right? I've been thickening it and giving it to Bob with a spoon - but then I become concerned that it might expand and choke him - I've read that this is a possibility (with swallowing problems.) Just wanted your expert advice! Bowel movements are becoming more and more of a problem - give Aloe Vera juice, take stool softeners, prune juice and trying to incorporate one dose of metamucil each evening. Thanks so much, Elaine Grimmesey If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Elaine, I forgot I feed Jevity Plus which has fiber in it. Ginger

Re: Advice Needed

Bill - Did you ever use Metamucil with the PEG tube? I have a fear of it expanding and clogging - probably stupid, as once it is through the tube and in the stomach it should be o.k., right? I've been thickening it and giving it to Bob with a spoon - but then I become concerned that it might expand and choke him - I've read that this is a possibility (with swallowing problems.) Just wanted your expert advice! Bowel movements are becoming more and more of a problem - give Aloe Vera juice, take stool softeners, prune juice and trying to incorporate one dose of metamucil each evening. Thanks so much, Elaine Grimmesey If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

Elaine,

Stool softeners add oil (like mineral oil) to the stool, to make it softer and easier to pass. MiraLax is basically a smaller dose of the same thing that's given to patients to prepare for a colonoscopy, and it acts by drawing water into the bowel, thus making the stool softer and adding bulk.

Rob currently takes both MiraLax (17 grams in 8 oz of water, nightly) and Surfak (docusate calcium, 240 mg, in the morning) and has not has a bad episode of constipation since he started this regimen.

Good luck,

Carol & Rob

Lexington, MA

Re: Advice Needed

Thanks, Carol - I wonder how this differs from the non-Rx stool softener (Ducoset? Can't think of the exact name) that Bob started taking when he was in the Rehabilitation Institute - just stronger? Because what we're using isn't doing a 100% job - or even a 60% job. Thanks, Elaine If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe

[Guest guest]

I second the suggestion on Miralax. My husband began using in August 2000. It has been most helpful.

Marilyn in TN

Reply-To: shydrager

Date: Fri, 28 Jun 2002 17:17:16 -0400

To: <shydrager >

Subject: Re: Advice Needed

Elaine,

I can't help with the PEG tube question, but I can recommend MiraLax. It is a powder which is mixed with water and forms a clear liquid. If acts to draw water to the bowel, so there's no problem with it expanding. It would certainly be safe to use with a PEG.

It is a prescription item, so you will have to ask your doctor for it.

Carol & Rob (who drinks a glass of MiraLax every night)

Lexington, MA

Re: Advice Needed

Bill - Did you ever use Metamucil with the PEG tube? I have a fear of it expanding and clogging - probably stupid, as once it is through the tube and in the stomach it should be o.k., right? I've been thickening it and giving it to Bob with a spoon - but then I become concerned that it might expand and choke him - I've read that this is a possibility (with swallowing problems.) Just wanted your expert advice! Bowel movements are becoming more and more of a problem - give Aloe Vera juice, take stool softeners, prune juice and trying to incorporate one dose of metamucil each evening.

Thanks so much,

Elaine Grimmesey

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

unsubscribe by sending a blank email to

shydrager-unsubscribe

[Guest guest]

Deborah:

I agree; there comes a time when you have to decide that you just want

to enjoy what you do have. I always go back to the Serenity prayer. " God

grant me the serenity to accept the things I cannot change, the courage to

change the things I can, and the wisdom to know the difference. " It is the

wisdom that I have had to pray about a lot. I have found that my God keeps

sending me the message to let go over and over until I do let go, and then I

do feel much peace. This was what made me ask our doctor, after years of hard

fighting the disease whether it was time to bring in Hospice and to let me

hear the relief in her voice as she said she thought it was. It was my

inability to completely accept that made me force Ken to go one more round

with the Urologist and intravenous antibiotics and hydration before I

completely turned it over to God and His wisdom. Ken lived a little over six

months after that, but he was more at peace during that time than I had seen

for a long time. He was first diagnosed with Parkinson's twenty years before

he died, so he did fight a good long fight with the help of his God, and for

him, there were many times when the new treatment made him much better.

However, the time did come when nothing really made him better. I pray for

you and that the two of you can come to some acceptance of what you

cannot change and that you can find the path to Serenity in your lives.

Love and Hugs, Barbara

[Guest guest]

Thanks for the advice from everyone who wrote. I am not giving up. I'm

just phobic from so much intrusion on my body. New meds cause me to break

out in hives...then the hospital.... more needles and tests... then

steroids....then diabetes....hot flashes....working my way back to being as

bad as I was before then bam...new doc....try a new med... and the cycle

starts all over again.

I haven't given up the fight but I have given up the will to keep trying

things " in hope " that only make me worse. If I could related one positive

experience from new meds or treatments since December 2001, then maybe there

would be an argument that I could go along with. From that time until

now... NOTHING has made me any better... EVERYTHING has caused me some kind

of side effect that makes me feel worse. You tell me if my thinking is

wrong... 4 hospitalizations, 36 days inpatient during those, 8 of which were

intensive care.... 3 rounds of steroids... 12 MRI's, 10 CT scans, 1 PET

scan.... 3 chest x-rays, 3 head x-rays, More meds, less meds, different

meds, try this, try that.... constipation, joint degeneration from the

steroids, intolerance to any pain medication, inability to even take meds

for the symptoms that I have because of being hyper-sensitive to just about

everything.

I will end this note with something positive... I do sleep better, talk

better, have less hypotension and better balance since the first surgery in

December. Other than that... nothing but fighting to get back to being as

bad as I was before.

To me... if feels like going to the doctor for a new treatment is like

asking someone what I can do to make my situation worse and then doing it.

It's stupid. I'm not going to get better, I know that. I just want to stop

being tortured.

Not sure what I need from ya'll by posting this... maybe I just needed to

get it out of my system and make myself face what I really fear.

Thanks for listening,

Hugs,

Deborah

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

I'm sorry I confused everyone. I wrote another post this morning in

response to Bill and Barb. I hope is was more clear.

I just need a break from the docs and the tests and the drug trials. After

getting the diagnosis of MSA from 6 neurologists, I think one would start to

believe that this is the diagnosis that " best fits " until autopsy. I do

have a type 1 chiari malformation of 4mm. 3 neuro's and the

neuro-ophthalmologist that I saw last week all said that it has nothing to

do with what I am experiencing.

is where I was 2 years ago, thought wise. " the docs have to be

wrong, there has to be something that is curable to explain it all. "

I guess the real question would be how do I get to accept this

disease and work with me on living today. I know it is hard for him, it was

hard for me.

Did my last post and this one help end the confusion?

Hugs and thanks for caring!

Deborah

Jim,

Yes, I still believe it is better to try to control the symptoms than worry

about the exact diagnoses. But you should make sure it is not something

which

is known and curable such as

Chiari. This is something which is an individual decision and I think

everyone

has to determine this for themselves. I would be the last to try to make

that

decision for someone else. We

spent five years getting a diagnoses which made sense (PD in 1990 and MSA in

1995 - at NIH) then we concentrated on managing the best we could.

Deborah,

Can you clear up this discussion for us. What exactly do you want? What

does

want? If the two of you talk it out, let us know what is going on.

We

are all confused as you can see.

Take care, Bill Werre

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

Jim Parsons wrote:

> Bill,

>

> If I remember correctly, after I had just joined the group a patient was

> wanting to locate more specialists for more tests to try and find a cure.

I

> think that you as well as others suggested that since a cure does not

exist

> at this time and with no cure in sight in the immediate future, efforts

> would be better spent in finding a doctor that would work with the

patient

> in controlling the symptoms.

>

> The way I interpret Deborah's original note is that this is actually what

> she is wanting to do. But her husband wants to continue sending her to

more

> doctors for more tests. Have you changed your viewpoint on this, or have

I

> misinterpreted your previous message?

>

> I agree with Deborah, it may me time to slow down, re-evaluate goals and

> regroup, and concentrate on managing the symptoms as well as possible.

>

> Jim Parsons

>

> Re: Advice Needed

>

> Hi all,

>

> I agree with Barbara , she read it as you wanted a break from seeing

> doctors

> and I read it as you wanted a break from fighting the disease. That well

> could

> be a difference between men and women. If you are tired of seeing

doctors,

> I

> agree with Barbara that you should be the one to decide what is

> enough.

> They can experiment with drugs and possibly find one that can help you at

> times.

> You must work with them to fine tune the drugs and if you do not want to

be

> bothered, that is your decision. Be aware that your husband and family

care

> for

> you and want you around as long as possible. There is always hope for a

> cure.

>

> Talk it over with your husband and family. This should be a time for

> communication and decisions for everyone. I always suggest grief

counseling

> for

> the whole family as it helped us make decisions early in the disorder.

>

> Take care, Bill Werre

>

> ==================================================

>

> kmcrae@... wrote:

>

> > Well, Tenacity, there it is, just as I said. Men react differently than

> > women. I answered your note trying to help you by listening to how you

> felt,

> > and Bill answered it by explaining why you had to keep fighting. Both

of

> us

> > were trying to help you, but he is a man and I am a woman, and we

answered

> > rather typically for our sex. You do have to ask directly for

what

> you

> > want from him and not expect that he will just know. Perhaps he will

begin

> to

> > understand that you do call yourself Tenacity for a reason, and that

when

> you

> > need a little respite from the constant running to doctors, it does not

> mean

> > you are completely giving up. We all need a little vacation from time

to

> > time; that does not mean we are going to run away from what we know we

> have

> > to do.

> > hugs and love, Barbara

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

[Guest guest]

,

Thank you for your helpful advice and tricks to keep things working. We

appreciate it.

Hugs,

Deborah aka Tenacity

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Deborah: I was surfing the Internet to learn more about Chiari Malformation

when I came across this website---The World Arnold-Chiari Malformation

Association. If you are not aware of the website I thought you might be

interested. Winifred

Re: Advice Needed

> >

> > Hi all,

> >

> > I agree with Barbara , she read it as you wanted a break from

seeing

> > doctors

> > and I read it as you wanted a break from fighting the disease. That

well

> > could

> > be a difference between men and women. If you are tired of seeing

> doctors,

> > I

> > agree with Barbara that you should be the one to decide what is

> > enough.

> > They can experiment with drugs and possibly find one that can help you

at

> > times.

> > You must work with them to fine tune the drugs and if you do not want

to

> be

> > bothered, that is your decision. Be aware that your husband and family

> care

> > for

> > you and want you around as long as possible. There is always hope for

a

> > cure.

> >

> > Talk it over with your husband and family. This should be a time for

> > communication and decisions for everyone. I always suggest grief

> counseling

> > for

> > the whole family as it helped us make decisions early in the disorder.

> >

> > Take care, Bill Werre

> >

> > ==================================================

> >

> > kmcrae@... wrote:

> >

> > > Well, Tenacity, there it is, just as I said. Men react differently

than

> > > women. I answered your note trying to help you by listening to how

you

> > felt,

> > > and Bill answered it by explaining why you had to keep fighting. Both

> of

> > us

> > > were trying to help you, but he is a man and I am a woman, and we

> answered

> > > rather typically for our sex. You do have to ask directly for

> what

> > you

> > > want from him and not expect that he will just know. Perhaps he will

> begin

> > to

> > > understand that you do call yourself Tenacity for a reason, and that

> when

> > you

> > > need a little respite from the constant running to doctors, it does

not

> > mean

> > > you are completely giving up. We all need a little vacation from time

> to

> > > time; that does not mean we are going to run away from what we know

we

> > have

> > > to do.

> > > hugs and love, Barbara

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >