Re: Introduction

[Guest guest]

Link wrote:

> Kim,

> What test did you have done? There are only a few that are reliable

> measures of gluten intolerance.

The Dr that did the test is a DAN Dr. I don't know what it was called, but

wheat isn't an issue. He suggested trying the diet was the best way to tell,

but I felt that a test would be better than changing everything, and he doesn't

have a problem with wheat.

> Also, eliminating casein without gluten is

> in most cases pointless due to the fact that casein and gluten are so

> similar at the molecular level.

We where willing to try the Gluten free diet if the tests came back that he has

a problem with wheat. I would do anything for my son. But why remove wheat if

there isn't a problem. The reason why we eat so much gluten is because Im not

much of a cook. You can buy lots of canned vegetarian meats at health food

stores, and we kinda live off of them, and I think almost all of them contain

gluten. I can cook some, but not very good. I think I would have to

actually learn how to cook ... oh and bake bread.

> Although it is true that some kids show a

> strong attachment to one or the other for their " fix " . Some kids are

> milk-a-holics and others are bread-a-holics and some are neither, but it

> rarely means that only one has to be removed from the diet. Sometimes,

> since gluten is so difficult to remove from the diet, we parents make a

> rationalization that only casein needs to be removed. It's not easy, but a

> cf/gf diet can be done, even on a vegetarian diet.

I agree, it can be done. But with a whole lot of hard work. That's why we had

the test.

thanks

Kim

>

> With best intentions,

> Pat

>

>

[Guest guest]

Kim,

Thanks for the reply. I hope it works out for you and your son.

Please don't be a stranger on the list. Even if you're not eliminating

gluten, if you are receiving advice from a DAN dr. you could have really

good positive input for all of us.

Pat

[Guest guest]

Hi

My name is Meri, I had an open RNY at UCLA March 8, 2000, performed by the

amazing Dr Liu. So far I have lost 94 pounds. I started at 263, wore a 2X;

I now wear a 10/12. I have been on a plateau for several months, but

continue to lose inches.

I take two chewable vitamins daily, a lactaid, (which helps me with the

smelly gas problem), and 400 iu of dry E (thank you vitalady), and three

calcium citrate. I have one protein drink a day, 55 grams. I am starting

the B12 injections tomorrow. although I have been using the sublinguals, I

feel like I should have more energy than I do. I am not sure what my last

labs were, unfortunately the Dr never faxed them to me. I will check them

before getting my shot tomorrow, and have made an appointment for my year

check up. I am enjoying getting to know everyone.

Meri

3-8-00, -94

[Guest guest]

,

Welcome to the list. Maybe if you explain that MSA is a Parkinson's Plus

disorder and copy this site:

http://www.cnsonline.org/www/archive/parkins/park-03.txt

(I've included the text below) it may help him to accept the exercises. Has the

doctor given him physical and speech therapy?

EXCERCISES FOR THE PARKINSON PATIENT -Just as running water does not

freeze, so moving muscles do

not freeze.

KNOW THE FACTS: The maintenance of normal

muscle tone and function is an important aspect of

the treatment of parkinsonism. In part, medication

administered for your illness achieves this goal.

However, to realize the full benefit of the medication

daily exercise and activity are essential. This book-

let outlines some of the exercises capable of main-

taining muscle power and tone and preventing

deformities of the limbs and spine. Their daily

performance has proved most beneficial to patients

with this illness.

TEN BASIC EXERCISES FOR

ThE PARKINSON PATIENT

1. Bring the toes tip with every step you take. In Parkinson's

disease, " you never make a move " , without lifting the toes.

2. Spread the legs (10 inches) when walking or turning, to

provide a wide base, a better stance, and to prevent (falling. It

may not look " beautiful, " but neither does falling.

3. For greater safety in turning, use small steps, with feet widely

seperarated. Never cross one leg over the other when turning.

Practice walking a few yards and turn. Walk in the opposite

direction and turn. Do so fifteen minutes a day.

4. Practice walking into tight corners of & room, to overcome

fear of close places.

6. To insure good body balance, practice rapid excursions of the

body. backward, forward and to the right and left, five

minutes, several times a day. Don't look for a wall when you

think you are failing. It may not be there. Your body will

always be there to protect you, if you will practice balance

daily.

6. When the legs feel frozen or " glued " to the floor, a lift of the

toes eliminates muscle spasm and the fear of failing. You are

free to walk again.

7. Swing the arms freely when walking. It helps to take body

weight off the legs, lessens fatigue. and loosens the arms and

shoulders.

8. If getting out of a chair Is difficult, rise with " lightning speed, "

to overcome the " pull of gravity. " Sitting down should be done

slow, with body bent sharply forward, until one touches the

seat. Practice this at least a dozen times a day.

9. If the body lists to one side. carry a shopping bag loaded with

books or other weights in the opposite hand to decrease the

bend.

10. Any task that is difficult, such as buttoning a shirt. or getting

out of bed, if practiced 20 times it day, becomes easier the

21st time.

FOR TIGHT MUSCLES AND

POOR POSTURE

STANDING

1. Stand ln front of a wall, facing

it about 8 " away. Raise arms

and reach as high as possible

toward the top of the wall.

Lean toward the wall and

stretch.

2. With your back to the wall,

alternate raising legs as high as

possible by bending the knee

as if marching in place.

3. Holding on to something se-

citre, squat down as far as

possible, bending knees; then

come tip.

SITTING

1. Sitting In straight-back chair,

place your arms behind the

chair and bring your

shoulders back as for as pos-

sible; raise your head up and

look at the ceilling.

2. Sitting In the same chair, grip

the ends of a broom or mop

stick with both hands, try to

raise It over your head until

you get It behind your head.

Keep head and shoulders as

erect as possible.

3. Sitting in same chair, place

one leg at a time on another

chair and press the knee

straight. Keep It there 15

minutes. Try both legs to-

gether.

4. Sitting in a chair, raise legs up

from the knee alternately, as

if stamping your feet.

LYING ON A FIRM BED OR

FLOOR

1. Lie on the floor or bed, flat on.

your back; try to press your

body to the floor as flat as

possible. Move your head

from right to left as far as

possible. Make sure your

head, shoulders, back, and

knees touch the surface.

2. Lie on the floor or bed on

your abdomen. Do the fol-

lowing one by one:

a. Put your hands behind

back and look up to ceil-

ing, trying to raise your

chest off the floor.

b. Kick your legs alternately,

as if swimming.

c. Turn your head from right

to left.

FOR BETTER BALANCE

1. Stand with hands on hips,

feet spread apart:

a. Practice marching in place

b. Practice raising leg straight

out to the rear.

c. Practice raising leg out to

the side.

d. Practice drawing a circle

with the leg.

2. Standing with hands at side,

feet spread apart:

a. Lean forward and back

b. Lean to both sides

c. Lean in a circular motion

and reverse the motion

FOR WALKING

1. When walking, REMEMBER:

a. Take as large a stop as pos-

sible

b. Raise your toes as you

step forward, hitting

ground with your heels

c. Keep legs apart and pos-

ture straight

d. Swing arms and look

straight ahead - your feet

know where the floor Is

located.

2. Collect a dozen magazines;

lay them out in a straight line.

Space them so that you can

take as long a step as possible.

Practice walking over these

magazines without stepping

on them.

3. For a better swing to arms,

walk holding a rolled maga-

zine in each hand; keep

elbows straight.

4. Practice walking sideways,

backwards, and take big steps.

FOR TURNING

1. When practicing turning:

a. Keep feet spread-apart and

head high

b. Use small steps-, rock front

side to side

c. Raise legs from the knees

2. If you feel glued to the floor:

a. Raise your head, relax back

on your heels and raise

yourtoes

b. Rock from side to side,

bend knees slightly and

straighten up and lift your

toes

c. It sometimes helps if the

arms are raised in a sudden

FOR GETTING IN AND OUT

OF A CHAIR

1. If you become glued a few

steps before you reach the

chair, try this: Don't aim for

the chair but some object

past it. Pass the chair as

closely as possible and as you

go by it sit down.

2. To sit down, bend forward as

far as possible and sit down

slowly. Get close to the

chair. Do not fall into the

chair.

3. To get up, move to the edge of

the chair, bend forward and

push up vigorously using your

arms; try to count 1 2 3 GO!

If you have a favorite arm-

chair, raise the back legs with

4 " blocks. This will help you

to get up easily. Don't let

people drag you up by your

arms, but help you by pulling

you under your arms, or with

a slight push on your back.

FOR GETTING OUT OF BED

1. Place blocks under the legs of

the head of the bed. This will

elevate the head of the bed, &

make it easier for you to sit up

and swing the legs off the bed.

2. A knotted rope tied to the

foot of the bed can help you

to pull yourself up.

3. To get to a sitting position,

shift the body down and rock

yourself by vigorously,

throwing your arms and legs

toward the side of the bed.

FOR USING YOUR ARMS AND HANDS

1. Practice buttoning and un-

buttoning your clothes; prac-

tice cutting food and writing.

Squeeze a ball or work with

" Silly Putty. " Keep your

fingers busy many times a

day. Tear paper; take coins

out of the pocket; play the

piano.

2. Always try to dress yourself

completely. Use shoehorns,

elastic laces, or extra-long

slioe laces to get a better

grip. Dress in the most re-

laxed and comfortable posi-

tion, sitting or standing, but

make sure you are in a safe

position.

3. To keep elbows straight and

shoulders loose, Install a pul-

ley In doorway, place a chair

under it or slightly in front.

Stretch your arms and

shoulders in all directions. By

working the pulley when

seated, you can get a more

vigorous pull.

FOR GREATER SAFETY IN

BATHTUB AND TOILET

If it is difficult to sit down in a

bathtub, try the following:

1. Place a beiicii, stool or chair

inside the tub; have the legs

sawed off to tub heiglit. Sit

on the chair and soap your-

self. Use shower to rinse, or

rubber shower extension.

2. Bathtub grab bars are avail-

able. Ilurcliase only those

that attach securely.

3. Raised toilet seats are coni-

mercially available.

4. Toilet an-n rest for getting on

and off the toilet are avail-

able

FOR SPEECH, FACE AND CHEWING DIFFICULTIES

1. Practice singing and reading aloud with forceful

lip movements. Talk into a tape recorder, if

one is available.

2. Practice making faces in front of a mirror.

Recite the alphabet and count numbers with

exaggerated facial motions. Massage your face

with vigor when washing and bathing.

3. When chewing food, chew hard and move the

food around; avoid swallowing large lumps.

The previously outlined general exercises and sug-

gestions are designed to help you. They are ancillary to

medical treatment which should be carried out in cotisulta-

tion with your physician. In special instances where other

diseases are associated with parkinsonism, your physician

may wish to limit the intensity of your physical activity.

Conversely, more intensive physical therapy may be Indicated

and in some instances should be done under the direction of

a physical therapist.

All activities possible should be engaged in: - work,

walking, shopping, house chores, gardening, visiting, senior

clubs, church organizations, travel, theater, swimming, sports,

gymnasium, health clubs, " Y " activities, etc.

Take care, Bill and Charlotte Werre

Tippett wrote:

> Hi my name is Angie. My father has Shy Drager Syndrome. He was diagnosed

> about 5 years ago. He isn't doing very well and gets worse every time I see

> him. I think he has given up. There doesn't seem to be any medications that

> help him with the symptoms. He seems to have almost all the symptoms I've

> read about. He can barely walk and falls all the time. His speech is so bad

> its difficult to understand him. He is exhausted all the time and has gotten

> to the point of not doing anything unless he has to. These symptoms along

> with a multiptude of others has him very depressed. He doesn't follow any

> type of exercising or diet. I live out of state and unfortunately only get

> to see him 2-3 times a year. I speak to him and my Mother frequently at

> least once a week. We really don't know how to help him. Any advise would be

> appreciated. Thanks

> Angie

> _________________________________________________________________

[Guest guest]

Dear Mrs. Tippett

MSA is a difficult neurological disease to be :

1- diagnosed 2- treated 3- deal with for sometimes many years.

From my experience we need to do the followings:

1- continuous pressure on the media to make MSA ptns. voice heard.

2- more research funds for MSA

3- attend your local MSA support group meetings. When you see & talk with MSA ptns.you will think about who to help these patients now & in the future.

My heart with your mother and you.

Dr. Rashed, Memphis, TN.

>From: " Tippett"

>Reply-To: shydrager

>To: shydrager

>Subject: introduction

>Date: Mon, 07 May 2001 15:30:56 -0400

>

>Hi my name is Angie. My father has Shy Drager Syndrome. He was diagnosed

>about 5 years ago. He isn't doing very well and gets worse every time I see

>him. I think he has given up. There doesn't seem to be any medications that

>help him with the symptoms. He seems to have almost all the symptoms I've

>read about. He can barely walk and falls all the time. His speech is so bad

>its difficult to understand him. He is exhausted all the time and has gotten

>to the point of not doing anything unless he has to. These symptoms along

>with a multiptude of others has him very depressed. He doesn't follow any

>type of exercising or diet. I live out of state and unfortunately only get

>to see him 2-3 times a year. I speak to him and my Mother frequently at

>least once a week. We really don't know how to help him. Any advise would be

>appreciated. Thanks

>Angie

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

[Guest guest]

Angie, Welcome, though sorry you are here.

This disease can be so disabling and frustrating that I can certainly

understand your dad's attitude at this point. However, exercise is important

if you can get him to do it because it can help a person retain certain

abilities longer than without it.

My mother Joyce (71) died in November -- she had the SND type of MSA. She

was diagnosed with MSA for only 2 years. She was debilitated in every way,

but managed to keep a remarkably upbeat attitude throughout and tried to

retain as much of her old life as possible. Mostly, that was the type of

person she was, but certain things helped. She took antidepressants. Also,

she finally at the end got home health aides to come in and help. She

resisted that for a long time and then realized they were better for her

than my dad in that respect (who wasn't the man for the job). My mom had no

balance and was stubborn about giving up walking. She fell a lot and broke

many bones. She spent the last two summers of her life in rehab. I would

encourage your dad to use a wheelchair, if he will. Otherwise, if he uses a

walker, make sure there is someone right with him at all times to avoid ER

visits.

I did not see my parents often, either. One thing I did that lifted my mom's

spirits enormously was to send her videotapes of my kids. She often watched

the home movies. Also, I made sure I was able to talk to her every day. I am

so happy that we were able to surprise her for her 71st birthday in August

and then came up for their 50th in September. We were due to visit the day

she died. I wish I had just gone down there more often. There were, of

course, other things going on in my life at the time that made it difficult.

Finally, my parents joined a support group for people with Parkinson's

(which my mom was originally diagnosed with). The symptoms are similar.

Anyway, it was something they both looked forward to and they met wonderful

people.

Good luck, Debbie

[Guest guest]

Hi Mrs. Tippett

With the assistance of others we have MSA support group. Next meeting will be this Friday 5/11/01 at 5 PM at W. Bowld Hospital room 438, about 15-20 attend it including family members. Professor Dr. Pfeiffer is a well known neurologist in the nation interested in MSA and I see some of his patients for autonomic nervous system evaluation. His clinic at Univ. of TN. phone # , 448-6195.

Thank you,

Dr. Hani Rashed

Autonomic Function lab.

UT, Memphis, 448-5588

>From: " Tippett"

>Reply-To: shydrager

>To: shydrager

>Subject: Re: introduction

>Date: Tue, 08 May 2001 08:52:33 -0400

>

>Thank you for the message. It means a lot to know that others care. I

>noticed that you signed the message as Dr and that you are from Memphis, TN.

>I am from Memphis originally. My family(Sister and Brother) still live

>there. My parents go there all the time to visit. Do you treat this disase?

>And if not do you know a doctor that does. The doctor my Dad sees doesn't

>really know anything about this. He has told my Dad that if he finds any

>information to share it with him. But maybe if he could see someone who

>could give him definite information then he might fight this disease a

>little. Thank you.

>Angie Tippett

>

>

> >From: "Hani Rashed"

> >Reply-To: shydrager

> >To: shydrager

> >Subject: Re: introduction

> >Date: Mon, 07 May 2001 22:58:45 -0500

> >

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>