Introduction & Questions

[Guest guest]

Hi Zoe,

Welcome out of lurkdom. :-)

I love The Firm too. I'm even quoted in that Firm Believers book. The Firm

doesn't fit in with BFL though. The weight sequences aren't challenging enough

(believe it or not!) and the cardio isn't the kind of intense intervals you

need. They're still great tapes. I still do one once in awhile. Sometimes if I'm

trapped indoors and need a cardio workout I'll do Tough Aerobic Mix or whatever

they're calling the original Volume 4 these days (Time Crunch?). That's a rare

emergency substitution though, not a regular occurrence.

You can do yoga, pilates, and belly dancing as you always have. Those workouts

are in addition to BFL though, they don't replace any portion of it.

Here's a Cliff Notes description of BFL while you're waiting for your book.

http://pages.ivillage.com/cl-shonda777/bflprinciples.html

All fruits and the more calorie dense vegetables like corn and squash do fall

into the carb category.

Hope that answers some of your questions.

Introduction & Questions

Hi everyone.

I've been lurking for a while and I think its about time for me to

introduce myself.

I read the BFL book over a year ago but I've never actually tried a

challenge. I'm in pretty good shape, well within my healthy

weight/BMI range, although I do have a little too much fat deposits

here and there. My boyfriend gained weight since quitting smoking in

January and we decided to start the challenge together.

I bought the book on Ebay last week, but while I'm waiting for it to

arrive, I have a couple of questions:

I am a big fan of the Firm tapes (most of them are a combination of

weights & cardio) Can I still use them while on the program? Should

I use them as cardio only (the max weight I use with them is 10lbs)

and use heavier poundage on the weight lifting days?

Do any of you do any other types of workouts during the week? I try

to yoga and pilates and I belly dance.

And I guess I'm a bit confused about the carbohydrate v. vegtable

distinction. Carrots, tomatoes, fruits, etc. do have carbs, so why

don't they count as such?

Thanks so much,

Zoe

p.s. I've really enjoyed the list so far. You gals are really

inspirational!

[Guest guest]

Hello, welcome to the group. You don't have to officially enter the

challenge to " do " a challenge. It is good for reference to make

before photos so you can chart your progress. It is best to follow

the BFL book for the first 12 weeks. If you don't you won't know how

well it works. After that you can incorporate other workouts in if

you wish. After your first 12 weeks you might be so sold on the BFL

idea you might not wish to do anything else. You can do the belly

dancing in addition.

There are different types of carbs. Starches(brown rice, sweet

potatoes, breads, etc.) have to be counted as a carb portion, not a

vegetable. Corn and cooked carrots too. Green beans, broccoli, salad

greens, tomatoes, asparagus, squash, have fewer carbs in larger

quantities so they would appear on your plate along with the starchy

carbs and the protein. A sample would be a grilled chicken breast,

broccoli, and brown rice. That is a complete BFL meal.

Fruits are carbs also, so, if you want to eat a fruit pair it with a

protein such as cottage cheese, a protein bar, some tuna, or blend

them into a protein shake. You'll get the hang of it pretty quick so

it won't require so much thinking. Hope this helps.

Stasia

[Guest guest]

Thanks for the quick response.

Basically though, I should stick to the book and not try to

supplement the weight training with Firm tapes, right?

Why?

Zoe

> Hi Zoe,

>

> Welcome out of lurkdom. :-)

>

> I love The Firm too. I'm even quoted in that Firm Believers book.

The Firm doesn't fit in with BFL though. The weight sequences aren't

challenging enough (believe it or not!) and the cardio isn't the

kind of intense intervals you need. They're still great tapes. I

still do one once in awhile. Sometimes if I'm trapped indoors and

need a cardio workout I'll do Tough Aerobic Mix or whatever they're

calling the original Volume 4 these days (Time Crunch?). That's a

rare emergency substitution though, not a regular occurrence.

>

> You can do yoga, pilates, and belly dancing as you always have.

Those workouts are in addition to BFL though, they don't replace any

portion of it.

>

> Here's a Cliff Notes description of BFL while you're waiting for

your book.

> http://pages.ivillage.com/cl-shonda777/bflprinciples.html

>

> All fruits and the more calorie dense vegetables like corn and

squash do fall into the carb category.

>

> Hope that answers some of your questions.

>

>

[Guest guest]

-Zoe: I am a big fan of the Firm tapes (most of them are a

combination of weights & cardio) Can I still use them while on the

program? Should I use them as cardio only (the max weight I use with

them is 10lbs) and use heavier poundage on the weight lifting days?

Do any of you do any other types of workouts during the week? I try

to yoga and pilates and I belly dance.

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

Other longtime guru's here will probably answer this better than I

can, but what they told me when I was wondering about the same thing

was that, if I've ALREADY been doing this type of exercise and am

used to it, I can do it in addition to the BFL workouts and it won't

hurt. But to follow the book insofar as the workouts.

For instance, my problem was that I teach dance and aqua aerobics 4-7

times per week, I was afraid that it would eat up muscle. But

Skwigg, mrsbishwits, Stasia and some of the other longtime gurus told

me that as long as I had a couple hours of rest time in between, I

should be fine.

Otherwise, I save strenous " non BFL " workouts for Sunday just for

fun, or for my " break week " in between challenges.

I broke my leg two weeks into my last challenge, so I'm going to be

starting again on Monday also, is that your first day?

Since I'm 'new all over again " it would be nice to know a few people

starting and going along the journey on a similar schedule to mine.

Good luck (not that you'll need it, BFL is primo!!)

[Guest guest]

For the first 12 weeks, I would do BFL as closely as possible to the way it's

written. If you change everything right from the start you'll never know how

well, or even if, the program works because you're not doing it.

If you replace BFL weights with a Firm tape, you won't get the same intensity

and your results will be compromised. If you do a Firm tape in addition to BFL

weights, you'll be overtraining and your results will be compromised. Either

way, you're not really helping things.

I'm guessing you haven't had a chance to do a BFL weight workout yet? The first

week, most people's legs are so sore they shuffle and wince. They talk about

installing hand rails for their toilet because they can't sit down without

crying. They consider flinging themselves down flights of stairs because that

would hurt less than taking them one at a time. In other words, you're probably

not going to need to supplement the weight training. :-) If you get the

intensity right, tall box step-ups will be the furthest thing from your mind.

Although you could still use the tall step as one of your BFL leg exercises and

pyramid the weights up.

Re: Introduction & Questions

Thanks for the quick response.

Basically though, I should stick to the book and not try to

supplement the weight training with Firm tapes, right?

Why?

Zoe

[Guest guest]

And you know something else about those BFL leg exercises? After

doing them for nearly three years, changing the routine when my body

adapts, I STILL need handrails in the toilet. I had to moan when I

sat down on the ground the other day to tie my shoes. Usually it is

worse the second day after a leg workout and I can't do cardio for

two days after in most cases. What fun it is!

Stasia

[Guest guest]

And you know something else about those BFL leg exercises? After

doing them for nearly three years, changing the routine when my body

adapts, I STILL need handrails in the toilet. I had to moan when I

sat down on the ground the other day to tie my shoes. Usually it is

worse the second day after a leg workout and I can't do cardio for

two days after in most cases. What fun it is!

Stasia

[Guest guest]

I still completely cripple myself pretty regularly. Evil Trainer's leg workout

evaluation method is, when you get home from a leg workout, as you're putting

your keys in the door, stop and do a full squat. If it's easy, you know you

didn't work hard enough. The first time I tried that I yelped and actually fell

OFF of the porch. I was like, coooool!! LOL

Re: Introduction & Questions

And you know something else about those BFL leg exercises? After

doing them for nearly three years, changing the routine when my body

adapts, I STILL need handrails in the toilet. I had to moan when I

sat down on the ground the other day to tie my shoes. Usually it is

worse the second day after a leg workout and I can't do cardio for

two days after in most cases. What fun it is!

Stasia

[Guest guest]

I still completely cripple myself pretty regularly. Evil Trainer's leg workout

evaluation method is, when you get home from a leg workout, as you're putting

your keys in the door, stop and do a full squat. If it's easy, you know you

didn't work hard enough. The first time I tried that I yelped and actually fell

OFF of the porch. I was like, coooool!! LOL

Re: Introduction & Questions

And you know something else about those BFL leg exercises? After

doing them for nearly three years, changing the routine when my body

adapts, I STILL need handrails in the toilet. I had to moan when I

sat down on the ground the other day to tie my shoes. Usually it is

worse the second day after a leg workout and I can't do cardio for

two days after in most cases. What fun it is!

Stasia

[Guest guest]

Hi Zoe!!

My little girls name is Zoey. Welcome to the group. I just

wanted to say hello, the girls are so wise in this group and offer

up tons of good advice with experience.

I don't know the answers to your questions, but I will continue

to do my evening Yoga when I'm not sore from the workouts

in two weeks. I'm just going to do rowing, or elliptical, treadmill

for my

cardio at the gym.

Tink

artzoe wrote:

> Hi everyone.

>

> I've been lurking for a while and I think its about time for me to

> introduce myself.

>

> I read the BFL book over a year ago but I've never actually tried a

> challenge. I'm in pretty good shape, well within my healthy

> weight/BMI range, although I do have a little too much fat deposits

> here and there. My boyfriend gained weight since quitting smoking in

> January and we decided to start the challenge together.

>

> I bought the book on Ebay last week, but while I'm waiting for it to

> arrive, I have a couple of questions:

>

> I am a big fan of the Firm tapes (most of them are a combination of

> weights & cardio) Can I still use them while on the program? Should

> I use them as cardio only (the max weight I use with them is 10lbs)

> and use heavier poundage on the weight lifting days?

>

> Do any of you do any other types of workouts during the week? I try

> to yoga and pilates and I belly dance.

>

> And I guess I'm a bit confused about the carbohydrate v. vegtable

> distinction. Carrots, tomatoes, fruits, etc. do have carbs, so why

> don't they count as such?

>

> Thanks so much,

> Zoe

>

> p.s. I've really enjoyed the list so far. You gals are really

> inspirational!

>

>

>

[Guest guest]

Zoe,

I haven't even done my lower body workout yet and today is my first day

doing the

BFL program. OUCH! I thought I would do Yoga before bed. I can barely lift

my glass of water... LOL Definitely too sore to add anything else.

Just like

said!

Tink

Skwigg wrote:

> For the first 12 weeks, I would do BFL as closely as possible to the

> way it's written. If you change everything right from the start you'll

> never know how well, or even if, the program works because you're not

> doing it.

>

> If you replace BFL weights with a Firm tape, you won't get the same

> intensity and your results will be compromised. If you do a Firm tape

> in addition to BFL weights, you'll be overtraining and your results

> will be compromised. Either way, you're not really helping things.

>

> I'm guessing you haven't had a chance to do a BFL weight workout yet?

> The first week, most people's legs are so sore they shuffle and wince.

> They talk about installing hand rails for their toilet because they

> can't sit down without crying. They consider flinging themselves down

> flights of stairs because that would hurt less than taking them one at

> a time. In other words, you're probably not going to need to

> supplement the weight training. :-) If you get the intensity right,

> tall box step-ups will be the fur thest thing from your mind. Although

> you could still use the tall step as one of your BFL leg exercises and

> pyramid the weights up.

>

>

>

> Re: Introduction & Questions

>

>

> Thanks for the quick response.

> Basically though, I should stick to the book and not try to

> supplement the weight training with Firm tapes, right?

> Why?

>

> Zoe

>

>

>

>

[Guest guest]

Hello everyone.

My name is Ireri.

I Hope it's ok for me to have join even thought i'm not Positive Hiv.

I'm here because, i'm really concern about this and i've been reading

a quiet bit about this that i'm just really plain confused.

On one side.. like you all know... and I'm aware y'all are totally

against.. is that the medical community as soon as you test positive,

they put you on meds.. and they give you all this list of what

you " should " do and " should not do " with regards of your body and

health. And then .. there's you guys.. which I incline for most. I

myself i'm not a believer of medications..I don't even take aspirin

for headaches!

But I began to be interested a lot more now , because i'm concerned.

A very dear friend of mine has just been tested positive. And I have

a gut feeling that is just not so true! It can't!!

Am I in denial? I don't know. This is why I don't belive he's hiv+

even though he has tested many times during these past months and

they all came out positive..ok ONE..he's married, he already has two

beautiful girls , second one born in 2000. ... Two.. HE doesn't , or

Ever has taken Drugs in any shape or form, He's ALWAYS been healthy.

THREE... He's not sleeping around with WOMEN.. so where the hell did

he get this? or why did he " tested " ALL OF THEM came out positive

this year and not the years before??

I have read that the so called " kits for testing " are not reliable..

so my question is... if he wasn't positive before? why now? from

where? how? I don't think out of plain air right?

Now, you can tell i'm new on the subject.. and I do hope to learn a

lot from you guys.

My friend thinks.. that the only way he got infected.. " if he really

is which I doubt " ... he could've gotten it from a cut and touched

some " contaminated blood " somehow? but even so, I don't believe it

because it sounds soooo far fetched!

Please guys, help me clear my thoughts on this?

He's always been a very healthy guy and hardly ever seen him with

even a cold! I would hate to see him take those medications that

could start making him REALLY sick for the first time! I want to know

as much as I can, so I can help him and inform him.

If there's any books you can suggest me to read.. or any links... I

would really , really apreciated it.

I don't know if it's ok to post my e-mail here.. let me know. I would

love to hear from you guys.

My messenger ID is ... ireri_c2002

I have so many questions and I hope y'all can help me.

Thanks in advance.

Ireri.

[Guest guest]

In a message dated 12/27/2004 12:02:40 P.M. Eastern Standard Time,

ireri25@... writes:

If there's any books you can suggest me to read.. or any links... I

would really , really apreciated it.

I don't know if it's ok to post my e-mail here.. let me know. I would

love to hear from you guys.

My messenger ID is ... ireri_c2002

I have so many questions and I hope y'all can help me.

Thanks in advance.

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

I have a question for you. Why the hell was your straight married friend

getting tested in the first place? No one should take that test. It was

proven to be invalid more than a decade ago. There is no explaining why your

friend tests positive. An invalid test is an invalid test. This just shows

the

danger of going to medical doctors (The leading cause of death, disease and

disability) and even donating blood. Boycott the blood banks. You'll be

doing yourself and humanity a favor.

Ed

[Guest guest]

Ireri,

I feel for your friend. He must be going through a lot of stress, pain

and second guessing himself right now. I know I did. However, I would

not worry too much yet. First of all, you need to go to these websites

and start reading. I wish I could provide you with books in your own

language. Perhaps some of these books have been translated.

Start off with Maggiore's site...

www.aliveandwell.org

Second, try to get her book; " What if Everything you Thought you Knew

about AIDS was Wrong "

These sites might also help...

www.virusmyth.net

www.duesberg.com

My guess is that if this man is testing positive now, he's probably got

underlying health problems that are making his immune system react to

more, because it is creating more antibodies. He should find a dissident

doctor as soon as possible, so he can figure out what might be wrong.

He should absolutely not take any AIDS drugs, though that's what any AIDS

doctor will want him to do. If he is healthy in most respects, he should

be okay with just addressing his possible health issues.

I also came into a positive test, when I had only lost my virginity a year

earlier. I had been with a few men and women but they all tested

negative. However, I had had mononucleosis as well as some pretty bad

colon problems. That is probably what spurned my positive test. As you

will see as you research, HIV may or may not even exist and even if it

does, it does not cause AIDS.

The other book, you would do well to read is " Inventing the AIDS Virus " by

Duesberg.

You should also check out " The Other Side of AIDS " movie. It can be found

on the Alive and Well site.

Good luck. Your friends health will most probably suffer a bit right now,

from stress alone. Tell him that he need not worry.

Caer

[Guest guest]

Hi, . Thank you for replying! I had herrington rods put in my

back was I was 9 or so (which is like spinal fusion, I think), and

like you, my head has never fully been upright after that. Until

roughly a year ago, I really didn't even notice the problem (it didn't

effect more than looks, so I was fine with it). I had adapted just

fine, but now my head just rests on my left shoulder and it hurts my

neck. If I could get a brace that hold it slightly upright I'd be

thrilled, but I agree that fully upright would be just as bad as now.

I'm sorry to hear that nothing has seemed to work for you, but I'm

glad you're adapting. It's good to know somebody gets it. Thanks again.

> >

> > Hello, Everybody!

> >

> > I'm new to this group, having just learned about it through my

> > e-friend Jenn. I'm , 24, and I have SMA2. I weigh maybe 50

> > pounds and sleep in an iron lung at night (because I despise the

> > bipap), and my boyfriend and I currently live in NYC (but we're moving

> > to Pittsburgh soon), where we are both freelance copywriters for a

> > marketing firm.

> >

> > Anyway, I've been looking for a space where I can discuss my

> > ever-changing body with people who actually " get it. " Lately, I have

> > been struggling with two big challenges: my increasingly weakened neck

> > and difficulty swallowing.

> >

> > THE NECK

> >

> > During the past year and a half, my neck muscles have gotten

> > increasingly weak, and I am now unable to hold my head up without the

> > support of a C-shaped neck brace (which is actually a baby's headrest

> > for use in the car). My head still falls to the left, though, and it's

> > starting to interfere with breathing and swallowing, and all the

> > muscles straining and pulling just plain hurt my neck and back.

> >

> > I've tried cervical collars and braces, but I don't like them because

> > I don't need any support on the right side of my neck, and, if

> > anything, these collars prevent my head from being pushed up, because

> > my neck can't bend the other way. Also, having the brace/collar

> > completely under my chin prevents me from talking and eating, and a

> > headrest on my chair is difficult because I lean so far forward anyway

> > that it's difficult to mount.

> >

> > The only thing that helps is when my partner holds my head up, placing

> > his hand under the left side of my jaw and the back of my neck. After

> > weighing my options, I've decided that I need a customized brace --

> > perhaps custom-molded? Does anyone else have a problem like this? How

> > do you support your head?

> >

> > SWALLOWING

> >

> > Lately I've developed swallowing problems with solid foods (liquids

> > are fine). I choke and gag on pretty much everything at one time or

> > another (I choked on MASHED POTATOES last week!), yet sometimes I am

> > completely fine. I know some of this is related to my neck issues

> > discussed above, but even with two C braces on, I still choke.

> >

> > (Of course, it doesn't help that because of my new problem I now have

> > anxiety attacks before dinner, and I often find myself probably

> > chewing too much and then I just have a mouth full of food.)

> >

> > I've skimmed the board, and I see that others here also have

> > difficulties swallowing, and I was wondering at what age, roughly, did

> > this start happening for you (knowing, of course, that everybody's

> > different), and if there's something I can do to prevent/slow down

> > this progression or strengthen my throat?

> >

> > It seems to be happening quite out of the blue, and it's really

> > frightening and upsetting -- especially because one of my favorite

> > things to do with my partner and friends is go out to eat. (And no,

> > last week's episode of House did not help my new fear.)

> >

> > Thank you in advance to all who reply.

> >

> >

> >

>

[Guest guest]

Hi, ,

I'm a, 30 yrs. old (yikes!), living with SAM Type II in OH. I work as a

social worker part-time and teach online college courses part-time. Welcome to

our little family!

I have trouble holding my head up straight too. I have to lean pretty far

forward in my wheelchair to get that " balance " plus have a headrest behind it

because if I bump into something and my neck " goes back " ...I'm screwed!! I was

wondering if you would like me to send you some pictures off-list of how my

leaning looks and the headrest is constructed to meet my needs. When I fly on

airplanes my head typically rolls back and to the side and it feels soooooo good

when someone flying with me can hold my neck and head like your partner does

yours. Sweet relief!! Unfortunately their hands tire quickly and the plane ride

still has hours left....grr!!!!!

Just let me know!! ~a

ras2883 <ras2883@...> wrote:

Hello, Everybody!

I'm new to this group, having just learned about it through my

e-friend Jenn. I'm , 24, and I have SMA2. I weigh maybe 50

pounds and sleep in an iron lung at night (because I despise the

bipap), and my boyfriend and I currently live in NYC (but we're moving

to Pittsburgh soon), where we are both freelance copywriters for a

marketing firm.

Anyway, I've been looking for a space where I can discuss my

ever-changing body with people who actually " get it. " Lately, I have

been struggling with two big challenges: my increasingly weakened neck

and difficulty swallowing.

THE NECK

During the past year and a half, my neck muscles have gotten

increasingly weak, and I am now unable to hold my head up without the

support of a C-shaped neck brace (which is actually a baby's headrest

for use in the car). My head still falls to the left, though, and it's

starting to interfere with breathing and swallowing, and all the

muscles straining and pulling just plain hurt my neck and back.

I've tried cervical collars and braces, but I don't like them because

I don't need any support on the right side of my neck, and, if

anything, these collars prevent my head from being pushed up, because

my neck can't bend the other way. Also, having the brace/collar

completely under my chin prevents me from talking and eating, and a

headrest on my chair is difficult because I lean so far forward anyway

that it's difficult to mount.

The only thing that helps is when my partner holds my head up, placing

his hand under the left side of my jaw and the back of my neck. After

weighing my options, I've decided that I need a customized brace --

perhaps custom-molded? Does anyone else have a problem like this? How

do you support your head?

SWALLOWING

Lately I've developed swallowing problems with solid foods (liquids

are fine). I choke and gag on pretty much everything at one time or

another (I choked on MASHED POTATOES last week!), yet sometimes I am

completely fine. I know some of this is related to my neck issues

discussed above, but even with two C braces on, I still choke.

(Of course, it doesn't help that because of my new problem I now have

anxiety attacks before dinner, and I often find myself probably

chewing too much and then I just have a mouth full of food.)

I've skimmed the board, and I see that others here also have

difficulties swallowing, and I was wondering at what age, roughly, did

this start happening for you (knowing, of course, that everybody's

different), and if there's something I can do to prevent/slow down

this progression or strengthen my throat?

It seems to be happening quite out of the blue, and it's really

frightening and upsetting -- especially because one of my favorite

things to do with my partner and friends is go out to eat. (And no,

last week's episode of House did not help my new fear.)

Thank you in advance to all who reply.

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

Pinpoint customers who are looking for what you sell.

[Guest guest]

Hi, Alana. Thank you for that swallowing tip. I'm going to have to

keep a little log about what I'm eating and note the temps and

difficulty I have swallowing them. It does make sense about the hot

foods, because I have noticed that as my dinner cools, the more

problems I have getting it down. At least coffee still goes down a-ok

-- knock on wood!

Also, do you think that your level of tiredness directly affects your

swallowing difficulties (regardless of if the food is hot/tepid)?

>

> Hi ,

>

> I'm Alana, SMA II, age 41, I live and work in Berkeley, CA. I co-

> habitate with my partner of seven years and two very spoiled cats.

>

> I met with a neurologist at an MDA clinic about swallowing. She

> recommended eating food at extreme temperatures and food with more

> spices if I could tolerate it. These things stimulate the swallowing

> reflex. She was right. I have a real hard time when I'm tired with

> tepid food. I now drink most things hot. Much easier.

>

> I hope you find something that works for you. Welcome to the group!

>

> Alana

>

[Guest guest]

Hello, Bethany.

I have alot of trouble at night, too, and unfortunately that's when we

usually eat dinner. Also, I've had a feeding tube for almost 15 years

now, and it's one of the best things I've ever had medically. Honestly

I wouldn't be alive without it, because even when swallowing was

normal, I still ate like a baby bird. And now that I'm having these

issues, I love it even more because if I'm having a particularly hard

time, I'm just like " screw it -- I'll just dump another can in my tube

tonight! "

> >

> > Hi ,

> >

> > I'm Alana, SMA II, age 41, I live and work in Berkeley, CA. I co-

> > habitate with my partner of seven years and two very spoiled cats.

> >

> > I met with a neurologist at an MDA clinic about swallowing. She

> > recommended eating food at extreme temperatures and food with more

> > spices if I could tolerate it. These things stimulate the swallowing

> > reflex. She was right. I have a real hard time when I'm tired with

> > tepid food. I now drink most things hot. Much easier.

> >

> > I hope you find something that works for you. Welcome to the group!

> >

> > Alana

> >

>

>

>

>

>

>

>

>

>

> ************************************** See what's new at

http://www.aol.com

>

>

>

[Guest guest]

Hi ! I'm Kendra, also 24 y/o with SMA type II. I live with my

husband Joe in CA, where we moved almost 3 years ago from upstate NY.

I'm a recent graduate with a master in public policy (still looking

for that perfect job); and I must plug that I'm a power soccer athlete

with a local team, because I am so proud that the national team USA

just won the first ever international power soccer world cup this

morning in Japan! www.powersoccerusa.net

I have difficulty holding my head up only when I'm very tired or weak,

usually at the end of a long day and when I need to be in a leaning

position for long periods of time - such as leaning over the sink to

brush my teeth. I use a head rest when I'm tired, and my attendant

holds my head when I brush my teeth so I don't strain my neck. I've

developed swallowing difficulty over the last couple years, mostly

with dry foods such as bread or breaded items. In addition, I'm not

chewing very much when I eat because my jaw tires out. My diet has

slowly been transitioning to more soft and liquid-like foods (soups,

stews, salads, etc). When I do eat out I'll have everything cut into

very small bites and typically only finish a small portion.

I hope you enjoy this group. There are so many talented and supportive

individuals here!

<3Kendra

>

> Hello, Everybody!

>

> I'm new to this group, having just learned about it through my

> e-friend Jenn. I'm , 24, and I have SMA2. I weigh maybe 50

> pounds and sleep in an iron lung at night (because I despise the

> bipap), and my boyfriend and I currently live in NYC (but we're moving

> to Pittsburgh soon), where we are both freelance copywriters for a

> marketing firm.

>

> Anyway, I've been looking for a space where I can discuss my

> ever-changing body with people who actually " get it. " Lately, I have

> been struggling with two big challenges: my increasingly weakened neck

> and difficulty swallowing.

>

> THE NECK

>

> During the past year and a half, my neck muscles have gotten

> increasingly weak, and I am now unable to hold my head up without the

> support of a C-shaped neck brace (which is actually a baby's headrest

> for use in the car). My head still falls to the left, though, and it's

> starting to interfere with breathing and swallowing, and all the

> muscles straining and pulling just plain hurt my neck and back.

>

> I've tried cervical collars and braces, but I don't like them because

> I don't need any support on the right side of my neck, and, if

> anything, these collars prevent my head from being pushed up, because

> my neck can't bend the other way. Also, having the brace/collar

> completely under my chin prevents me from talking and eating, and a

> headrest on my chair is difficult because I lean so far forward anyway

> that it's difficult to mount.

>

> The only thing that helps is when my partner holds my head up, placing

> his hand under the left side of my jaw and the back of my neck. After

> weighing my options, I've decided that I need a customized brace --

> perhaps custom-molded? Does anyone else have a problem like this? How

> do you support your head?

>

> SWALLOWING

>

> Lately I've developed swallowing problems with solid foods (liquids

> are fine). I choke and gag on pretty much everything at one time or

> another (I choked on MASHED POTATOES last week!), yet sometimes I am

> completely fine. I know some of this is related to my neck issues

> discussed above, but even with two C braces on, I still choke.

>

> (Of course, it doesn't help that because of my new problem I now have

> anxiety attacks before dinner, and I often find myself probably

> chewing too much and then I just have a mouth full of food.)

>

> I've skimmed the board, and I see that others here also have

> difficulties swallowing, and I was wondering at what age, roughly, did

> this start happening for you (knowing, of course, that everybody's

> different), and if there's something I can do to prevent/slow down

> this progression or strengthen my throat?

>

> It seems to be happening quite out of the blue, and it's really

> frightening and upsetting -- especially because one of my favorite

> things to do with my partner and friends is go out to eat. (And no,

> last week's episode of House did not help my new fear.)

>

> Thank you in advance to all who reply.

>

>

>

[Guest guest]

A lady I work with drinks these daily-she calls it " boba " . I tried it-not bad-a

little sweet for me .

Alana <alrt@...> wrote: If you don't know what the bubble drink is that

I mentioned, see:

http://en.wikipedia.org/wiki/Bubble_tea

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[Guest guest]

Camilla, my mouth really doesn't open very wide either. I'm a

dentist's worst nightmare!

Tschuess!

> >

> > Hello, Everybody!

> >

> > I'm new to this group, having just learned about it through my

> > e-friend Jenn. I'm , 24, and I have SMA2. I weigh maybe 50

> > pounds and sleep in an iron lung at night (because I despise the

> > bipap), and my boyfriend and I currently live in NYC (but we're moving

> > to Pittsburgh soon), where we are both freelance copywriters for a

> > marketing firm.

> >

> > Anyway, I've been looking for a space where I can discuss my

> > ever-changing body with people who actually " get it. " Lately, I have

> > been struggling with two big challenges: my increasingly weakened neck

> > and difficulty swallowing.

> >

> > THE NECK

> >

> > During the past year and a half, my neck muscles have gotten

> > increasingly weak, and I am now unable to hold my head up without the

> > support of a C-shaped neck brace (which is actually a baby's headrest

> > for use in the car). My head still falls to the left, though, and it's

> > starting to interfere with breathing and swallowing, and all the

> > muscles straining and pulling just plain hurt my neck and back.

> >

> > I've tried cervical collars and braces, but I don't like them because

> > I don't need any support on the right side of my neck, and, if

> > anything, these collars prevent my head from being pushed up, because

> > my neck can't bend the other way. Also, having the brace/collar

> > completely under my chin prevents me from talking and eating, and a

> > headrest on my chair is difficult because I lean so far forward anyway

> > that it's difficult to mount.

> >

> > The only thing that helps is when my partner holds my head up, placing

> > his hand under the left side of my jaw and the back of my neck. After

> > weighing my options, I've decided that I need a customized brace --

> > perhaps custom-molded? Does anyone else have a problem like this? How

> > do you support your head?

> >

> > SWALLOWING

> >

> > Lately I've developed swallowing problems with solid foods (liquids

> > are fine). I choke and gag on pretty much everything at one time or

> > another (I choked on MASHED POTATOES last week!), yet sometimes I am

> > completely fine. I know some of this is related to my neck issues

> > discussed above, but even with two C braces on, I still choke.

> >

> > (Of course, it doesn't help that because of my new problem I now have

> > anxiety attacks before dinner, and I often find myself probably

> > chewing too much and then I just have a mouth full of food.)

> >

> > I've skimmed the board, and I see that others here also have

> > difficulties swallowing, and I was wondering at what age, roughly, did

> > this start happening for you (knowing, of course, that everybody's

> > different), and if there's something I can do to prevent/slow down

> > this progression or strengthen my throat?

> >

> > It seems to be happening quite out of the blue, and it's really

> > frightening and upsetting -- especially because one of my favorite

> > things to do with my partner and friends is go out to eat. (And no,

> > last week's episode of House did not help my new fear.)

> >

> > Thank you in advance to all who reply.

> >

> >

> >

>

[Guest guest]

Hi, Mike! Thank you for the warm welcome. I'm actually originally from

Latrobe (and I went to college in Edinboro), so I am very familiar

with the Steelers and Pittsburgheze. I've only been in NYC for the

past year, but I miss good ol' Western PA. I *do* need to learn the

ins and outs of the 'Burgh itself, though, especially since I'll be

living right on the northside (by Allegheny General Hospital), so

don't be surprised if you get a " Help Me! " e-mail.

>

> Welcome ,

>

> My name's Mike. I'm one of the co-moderators of the group, even though

> I do not have SMA. Welcome to the group and also welcome to

> Pittsburgh! I was born and raised just north of Pittsburgh. I

> currently still work in that area, but after getting married a couple

> years ago have moved to Eastern Ohio.

> I can't help you with your neck or swallowing, but make sure you get

> Steeler gear, and you'll fit in just fine in The 'Burgh. Oh yes,

you'll

> have to learn Pittsburgheez as well. Not sure if I can help with

> anything about the area, but if I can, drop me a line.

>

> --

>

> Later,

> Mike Briggs

> Photo Gallery: http://www.pbase.com/photogrif/

>

> " Fish Gotta Swim, I Gotta Dive "

>

[Guest guest]

Thanks, Kendra. I just realized that I hadn't replied to you yet. My

neck/head problems definitely get worse the more tired I am, too,

that's why I am totally a morning person! Also, rock on with the power

soccer. My college briefly had a team, but it was intermural, but I

never joined b/c I was always too afraid one of the big chairs would

clobber my tiny one!

> >

> > Hello, Everybody!

> >

> > I'm new to this group, having just learned about it through my

> > e-friend Jenn. I'm , 24, and I have SMA2. I weigh maybe 50

> > pounds and sleep in an iron lung at night (because I despise the

> > bipap), and my boyfriend and I currently live in NYC (but we're moving

> > to Pittsburgh soon), where we are both freelance copywriters for a

> > marketing firm.

> >

> > Anyway, I've been looking for a space where I can discuss my

> > ever-changing body with people who actually " get it. " Lately, I have

> > been struggling with two big challenges: my increasingly weakened neck

> > and difficulty swallowing.

> >

> > THE NECK

> >

> > During the past year and a half, my neck muscles have gotten

> > increasingly weak, and I am now unable to hold my head up without the

> > support of a C-shaped neck brace (which is actually a baby's headrest

> > for use in the car). My head still falls to the left, though, and it's

> > starting to interfere with breathing and swallowing, and all the

> > muscles straining and pulling just plain hurt my neck and back.

> >

> > I've tried cervical collars and braces, but I don't like them because

> > I don't need any support on the right side of my neck, and, if

> > anything, these collars prevent my head from being pushed up, because

> > my neck can't bend the other way. Also, having the brace/collar

> > completely under my chin prevents me from talking and eating, and a

> > headrest on my chair is difficult because I lean so far forward anyway

> > that it's difficult to mount.

> >

> > The only thing that helps is when my partner holds my head up, placing

> > his hand under the left side of my jaw and the back of my neck. After

> > weighing my options, I've decided that I need a customized brace --

> > perhaps custom-molded? Does anyone else have a problem like this? How

> > do you support your head?

> >

> > SWALLOWING

> >

> > Lately I've developed swallowing problems with solid foods (liquids

> > are fine). I choke and gag on pretty much everything at one time or

> > another (I choked on MASHED POTATOES last week!), yet sometimes I am

> > completely fine. I know some of this is related to my neck issues

> > discussed above, but even with two C braces on, I still choke.

> >

> > (Of course, it doesn't help that because of my new problem I now have

> > anxiety attacks before dinner, and I often find myself probably

> > chewing too much and then I just have a mouth full of food.)

> >

> > I've skimmed the board, and I see that others here also have

> > difficulties swallowing, and I was wondering at what age, roughly, did

> > this start happening for you (knowing, of course, that everybody's

> > different), and if there's something I can do to prevent/slow down

> > this progression or strengthen my throat?

> >

> > It seems to be happening quite out of the blue, and it's really

> > frightening and upsetting -- especially because one of my favorite

> > things to do with my partner and friends is go out to eat. (And no,

> > last week's episode of House did not help my new fear.)

> >

> > Thank you in advance to all who reply.

> >

> >

> >

>