Re: Digest Number 544

[Guest guest]

> Date: Fri, 3 Dec 1999 09:13:19 -0600

> From: " SC " <sasc@...>

> Subject: Re: Digest Number 524Addendum)

>

> I had thought the federal government passed a law some time back that

pre-existing conditions couldnt exclude you? Is this just got around by

the insurance companies raising prices so high that people cant afford

it. I have medicare luckily altho no drug coverage or I would never see

a doctor because all monthly insurance rates are higher than my monthly

income. I just do without expensive medicine when he perscribes it.

>

>

Correct

Regards,

Geoff Crenshaw, ACC -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Religion: Man's attempt to discover God

Christianity: God's offer to save mankind

[Guest guest]

> Date: Fri, 3 Dec 1999 08:42:52 -0800

> From: " judy wiebe " <deejay@...>

> Subject: New York insurance law

>

> states in her post to Mark and Geoff that New York has a law

that

> provides no one can be turned down for health insurance regardless of

> previous illness etc. She says it's a great law.

> ****Wait a minute......Washington state also has that law and it has

raised

> havoc with health insurance for residents in this state. Number one

given

> is that insurance companies want to make money. How can they always

profit

> if they have to take on lots of people who have big illness? Their

> answer....the company pulls out of that state. This is what has

happened

> in Washington. We are a small mom and pop hardware store and we

provide

> health insurance for our employees. One by one the insurance carriers

have

> sent us our " dear john " letter. Then we must seek out a new carrier

and

> each time the cost is higher and the coverage less. It's so

frustrating as

> we live right on the Oregon border, but even so we can't get the

Oregon

> health insurances to take us on cause we live in Washington. I'm not

sure

> where this will all end.

> So what " sounds " like a wonderful law....forbidding the insurance

companies

> to turn anyone down for insurance regardless of their medical

> history......And I think this is great too.....I think Everyone should

> have good coverage....But the insurance companies win in the end by

just

> cancelling out and leaving the state. What's the answer? Judy

(deejay)

California's market is too large to bypass, and we have the same law.

But what the law does NOT do, and legally - at least Constitutionally -

it CANNOT do, is force sellers of insurance to maintain a specific rate

level or rate ceiling.

And thus, as said - yes - the law is there, they just get around

it by pricing premiums so high people can't buy it.

I was specifically EXcluded from my bride's insurance by contract - else

the premiums would have been so high they would have to chose between

having insurance for the whole group - our firing her. That is different

than DENYING coverage. They don't deny - they just price in the

stratosphere! Sounds like the problem is everywhere - no surprise, that.

Regards,

Geoff Crenshaw, ACC -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Religion: Man's attempt to discover God

Christianity: God's offer to save mankind

[Guest guest]

Hmmm, I was offered Blue Cross, High-Risk, RA in California for just under

$200 per month premium, can't recall the ghastly deductible, and it had a

$50,000 lifetime cap, laughable when you have a condition that may require

surgery someday. Wonder why such a disparity in the rates? Liz G

[Guest guest]

The insurance companies in NY are mandated to cover everyone and to offer all

private insurance if they don't have jobs and what they charge is controlled

by state legislature. If they pull out, they lose a big market and believe

me they're doing fine. What happens is that well people pay for sick people

since everyone is pooled. I'm sorry that's happening for you, but as bad as

the insurance situation is, in NY I think its not as bad as it could be (and

may yet be...let's hope not, though).

[Guest guest]

There is such a disparity in rates and benefits because each state makes

their own laws. What a mess!

[Guest guest]

In a message dated 2/23/2000 6:01:40 AM Eastern Standard Time,

onelist writes:

<< I hope that this helps, but maybe Mark Zaid, Dr. Nass, or Gretchen or

other

list recipients can provide you with information on the FOIA on the

government's financial involvement with Bioport. >>

For information on filing FOIA requests, I recommend the following websites:

<A HREF= " http://www.rcfp.org/foiact/index.html " >How to use the Federal FOI

Act</A> (http://www.rcfp.org/foiact/index.html)

<A HREF= " http://thomas.loc.gov/cgi-bin/cpquery/z?cp106:hr50.106: " >http://thom

as.loc.gov/cgi-bin/cpquery/z?cp106:hr50.106:</A>

(http://thomas.loc.gov/cgi-bin/cpquery/z?cp106:hr50.106)(Congressional guide

on FOIA)

You should direct the request to:

Charlie Y. Talbott

Directorate for Freedom of Information

1155 Defense Pentagon

Washington, D.C. 20301-1155

telephone number: (703) 697-1160

fax number: (703) 693-7341

e-mail address: dfoisr@...

[Guest guest]

Lynn,

Sorry, I don't get online everyday and I missed your original message.

I have a 27-year old son with severe OCD. He is presently stuck here in our

house and has been for almost two years now. I would be glad to correspond

with you on the topic of living with an adult child with OCD - either on this

list, or privately if you'd rather.

Jackie (in IN)

[Guest guest]

-

I'm hoping to get to the chat group tomorrow now that I know it will be

at 9 PM our time. says the library is open 'til 10 PM so I can use his

computer for the chat. " Talk " to you all tomorrow.

Jackie

[Guest guest]

Hi all, Becky,

What symptoms do you have w/ Bulbar Palsy & the throat?

Thanks, Patsy

[Guest guest]

Hi June,

Your dad might be on to something about thyroid being connected to CMT.

We seem to have thyroid problems too.

Patsy

I don't believe you can get CMT unless it is in your family somewhere.

In our family, we're supposed to be 1A, but there seems to be other

types we have symtoms sp of.

[Guest guest]

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

From: patsy1128@... <patsy1128@...>

egroups <egroups>

Date: Friday, October 13, 2000 10:33 PM

Subject: Re: [] Digest Number 544

>Hi all, Becky,

>What symptoms do you have w/ Bulbar Palsy & the throat?

>Thanks, Patsy

>

>

>>>>>>My shoulders are atrophied and upper arms and chest, neck and face and

my throat is atrophied. I have upper body weakness. I have trouble

swallowing, I get choked easy, its getting worse as liquids cause me to

choke now. I have hearing loss in my right ear. My speech is being

affected as my toungue is being pulled the the left and its weaker now too.

Can you push your tongue to the side of your cheek (inside the mouth of

course! ) and make a tent of your cheeks? I can't any more. I don't have

the strength to do it any more. Progressive Bulbar Palsy affects cranial

nerves 7-12. And once diagnosed with it, life expectancy is 1-3 years, but

so far mine is thought to be benign. Thats one of the things they will

determine at Barns Hospital. (I hope). Its very very rare to have this

with CMT. I'm tired of being rare! I don't want to be rare! I don't want

to be studied and poked and shocked! Sorry, I'm having a really really bad

night tonight. I think it just finally sank in about the hospital and all.

~>Becky M.

[Guest guest]

Carolyn-be careful in the house. I've gone barefoot in the house (and would

everywhere if I could since I've never found a pair of shoes that fit except

Birkenstocks and as my balance worsens they get more and more impractical. I

fell, tripped, over the telephone cord and broke little bones in my foot (I'm

the one who fell and broke my leg ). I just can't get it into my head I

can't move around as I was 20 and a whole lot thinner and more agile. My

balance sucks.

The more I read about the AFOs and how many people wear them, the more I have

a sneaky feeling I should have been using these years ago.

When you all go for shoes don't you have a terrible time finding shoes wide

enough? And shoes which will accommodate the constrictions in my feet? I've

tried extra depth but I can't seem to get them wide enough. My brother has

worn molded shoes since he was 18 or so.

Since his move to San Francisco he has had to pay $1000 for a pair.

I used to be reduced to tears after a trip to a shoe store.

Carolyn Mc

[Guest guest]

> Carolyn-be careful in the house.

I just can't get it into my head I

> can't move around as I was 20 and a whole lot thinner and more

agile.

> When you all go for shoes don't you have a terrible time finding

shoes wide

> enough? And shoes which will accommodate the constrictions in my

feet?

> I used to be reduced to tears after a trip to a shoe store.

> Carolyn Mc

Hi, Carolyn Mc, Carolyn C here.

Thanks for the warning. I too tend to forget that I'm not young, not

slim (LOL) and also that my balance is weird, at best! I'm glad I'm

not alone with the shoe stuff. I used to be a shoe nut and still have

a closet full of shoes I'll never wear again. I don't have wide feet

(yet), but the extremely high arches and foot drop make it nearly

impossible to get a pair that work at all. I have a pair of (cheap)

Mushrooms oxfords that are nearly threadbare, but they have worked

for several months just as well as much more expensive shoes and my

orthotics fit in them. I always feel absolutely smothered in bigger,

deeper shoes. My feet always feel very, very tender - I guess it's

the " bone on bone " syndrome.

Lamar mentioned that he has had good success with Dr. Scholl's

oxfords. I haven't tried them yet, but know they are very

inexpensive. Occasionally they show up in ads.

I have been waiting to get some more shoes until this thing with my

footdrop is analyzed by the MDA folks to see what they come up with.

Soon I'll have to hit the stores again. Bummer.

Have a great day.

Regards, Carolyn

[Guest guest]

Loriann,

I have to agree with Beth. I think that it's awfully easy for medical

personnel to make these decisions, just so that everything is perfectly for

them. Your doctor is not the one who has to go through this trial! And

what about that oath, " First do no harm " ? You are in my prayers.

Terry

Mom to , 13 yrs.

[Guest guest]

Dear Loriann,

This is hearbreaking to read that you have to watch your son fall apart. I

thought that all doctors take an oath:

" FIRST, DO NO HARM " .

If is being harmed by being back on gluten, that is, even if they

want to prove he has celiac- but it involves damaging his intestines

again...I mean, how is this doing no harm? All my mother's intstincts are

saying wrong, wrong, wrong!! And if his behaviors are so clearly out of

control now that he's got gluten in there again, how can they say that you

have to show damage in order to prove celiac? At this point, if it walks

like a duck and quacks like a duck....

At this point, it sounds like a bass-ackwards way to say it is highly

probable that he has celiac. Also who benefits from an *absolute* dx that

is not autistic, if in the next three months his gut is wrecked, your

house is wrecked, and your family life falls apart?

" First, do no harm. "

How can the doctor ask you to do this?

Just my opinion.

Hugs and prayers that you get the guidance you need to make these tough

decisions. Bless you!

Beth

[Guest guest]

Thanks, I'm just waiting until the offices open up this morning to put in the

call. Usually when a doctor gets a consult they call the patient to schedule

the appointment, but he said if I didn't get the call in a week, to make it

myself. That's what I'm going to do this morning. I will probably have to put

school on hold, too. I don't think anything he learned during this period would

be retained, anyway.

Thanks for everyone's prayers....they are definitely appreciated and needed.

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD, possibly to lose all but DS and gain

Celiac

And , 17 months and Strong Willed

[Guest guest]

Hi Jeanie,

These diapers aren't any better and I have to use two and diaper liners also

which they provide along with matress protectors. If I remember correctly

now, the Health agency we use for these diapers called the doctor to get a

prescription for it, but I never had to do anything other then ask for them,

and they did the rest. can't put them on himself like pull ups but he

can tear them off in the morning to go to the bathroom. We're in Riverside

County and is 13 and is still provided by Regional Center even though

he has MediCal.

(mom to 13 DS/ASD)

[Guest guest]

In a message dated 11/28/00 12:31:22 AM Pacific Standard Time,

MBrayley@... writes:

<< We're in Riverside

County and is 13 and is still provided by Regional Center even though

>>

,

OC Regional Center must be running a game on me then...but am not all that

surprised ;(

Jeannie

[Guest guest]

Jeannie & ,

Do you both get Respite through your Regional Centers?

Terry

Mom to , 13 yrs.

[Guest guest]

In a message dated 11/28/00 7:20:29 AM Pacific Standard Time,

Imaddenmom@... writes:

<< Do you both get Respite through your Regional Centers?

Terry >>

Terry,

Yes we get respite, 32 hours a month...the big problem is finding someone to

do it. Regional Center employed a company (the same company that does after

hours crisis calls) and the idiots flaked! Yep gave them all my 32 hours,

the did not show let alone call, were late...one girl let Mark get his shoe

off and throw it through a window...the list goes on...I am at my wits end

here. Just got him off to school and he was one hyper pain in the butt

today. I am ready to go back to bed!

Jeannie

Mom to Mark and

[Guest guest]

Jeannie,

How about " parent vendored " Respite? You find a worker yourself and they

work as an Independant Contractor for you? You bill the RC at the end of

each month and they " reimburse " you for the Respite hours. In reality, I

don't know any parents who can actually pay out the $$$, so the worker waits

until the check comes from RC to get paid. The check is made out to you and

you pay the worker. It actually works out pretty well. The bummer is

finding someone who is " qualified " to watch your kid.....I bet I interviewed

every weirdo in this area when I was first looking for a Respite worker here.

But, eventually I found good, reliable people. Surprisingly, mostly they

are young....18 - 20 years, going to college and wanting to work part time.

Terry,

Mom to , 13 yrs.

[Guest guest]

Terry,

I am parent vendored for respite, like you I have had many problems finding

someone. I just got the process started at our local college to advertise

for someone there. Cross your fingers for me that someone actually calls!

)

Jeannie

Mom to Mark and

[Guest guest]

Jeannie,

You got it! You can also talk to your local Special Ed

Programs....particularly the " County " Special Ed classes....I have run into

several classroom aides who are still taking classes and need practical 1:1

experience. Our local High School has a program for kids who want to be in

the medical field and the Special Ed classes use those kids as peer helpers.

Some of those 18 yr. old Seniors are interested in doing Respite too. I

considered calling the County office that provides In Home Support Services

because I thought they might have a list of people who were interested. I

never got that far, but I'm sure at some time I will be calling them! I

have found, for , that a male attendant seems to work better. They

are better able to cope with him when he " drops " (90+ pounds and almost 5

feet tall) and they are better able to control him when he is being a

" butt " ....trying to pull out his g-tube or trying to spill his feeding, etc.

The reality is that most of the time, I am here even though I have a Respite

worker with . It means that I can leave the room or work on bills

(ugh!), be on the computer, or whatever, without having to worry what

is doing. Being here, I can monitor the interaction between and the

caregivers so I know whether or not I feel comfortable leaving him alone with

them. That's a tough call considering he is non-verbal. I need to be sure!

You know what I mean? Fortunately, my older son and some of his friends have

been providing Respite for us for the past year or so.

Terry

Mom to , 13 yrs.

[Guest guest]

i finally get to brag, after the big fiasco this summer weith nathan's

respite and SCL, hours and the providers, we got a whole new case manager

etc, and this fall we found the most wonderful caregiver that does all his

respite and SCL hours, except what respite we take out for camp sunnyside,

but we have like around 575respite hours a year to use how and when we want

that comes in handy, and our scl is 52hours a month and we no longer have to

sue then or loose them, we always have the 52 wheather we use them all or

not. His caregiver is an older woman in her 50's i do believe, but she is

calm and patient, and nathan seems to enjoy her greatly, she said yesterday

at cubs pack meeting he was a perfect angel, paid attention and everything.

WOW!!! She doesnt get discouraged when he is haveing tantrums, she just

rides them out as we do, and tries to help find something to take his mind of

it. so thank you god for such an angel of a lifesaver. shawna.

[Guest guest]

In a message dated 1/27/01 2:33:22 AM Pacific Standard Time,

bodyforlife writes:

<< Another question I have is about Phen-Free. I know a lot of people

take it, and I am worried that it causes a weird feeling in my chest,

like heartburn. >>

Hi. I just started myself and bought EAS BetaLean at GNC which I was told is

EAS's new version of the Phen-Free. Basically its a fat burner. I noticed a

little heart racing but then checked the label and there is caffeine in it.

Does caffeine give you heartburn? I can cause the " racing " feel. Lots of

diet products have that effect from the caffeine. I dont take near the dose

listed on the bottle. It says 3 pills/ twice a day. I'm only doing one pill

2x day. They're huge horse pills too.