Re: (unknown)

June 7, 2006

My husband had a very pronounced Lewy Lean at times -

he leaned to the left on chairs, and if I wasn't

looking, he sometimes leaned so far he fell off. It

sometimes was quite a job to get him back up. He also

did this when walking, especially if it was very far.

One time when we were shopping, he was leaning so far

to the left, I thought he was going to fall over, and

I had to virtually hold him up until we got him to a

seat. I didn't know then what it was, but found that

out on the site later. Wished I would have known

before.

He also was very cold at home this past winter. Wore

a t-shirt, long-sleeved shirt, sat with a blanket

around his shoulders and sometimes whole body, by an

electric heater and still complained about being cold.

He is the NH now, and today it was 94 here. When I

got there late p.m. to be with him during dinner, he

had a coat on and said he was cold. AC was not that

cold either. So, both are obviously LBD symptoms.

Also runny nose for him. I have been reading today

that Aricept might be the cause of it and may ask them

to discontinue it to see if that might be the cause.

--- sissyp1102 wrote:

> i have noticed that my husband (diagonised with

> parkinsons and LBD)

> skin is always cool to the touch i ask him if he is

> cold sometimes he

> says yes sometimes he says no, also he is leaning to

> the right side i

> have tried to get him to set up straight but he says

> he cant, has

> anyone else come across this problem. thanks for

> your help, sissy

> lewis

>

__________________________________________________

October 26, 2007

Honestly....I don't think the doctor had ANY right to tell you who you

should tell, or not tell..........that's none of his/her business, and very OLD

SCHOOL thinking if you ask me!! I think I'd be irate. Maybe I am now..ahaha!

It's your decision as parents to tell who you want to tell..... rent a blimp

and have it streaming across the skies if you want to! I personally am for

telling............ first and foremost, it EDUCATES others. Also, you never

know how your daughter will do in the future...she may need say, speech

therapy, and if you've kept her diagnosis a secret from the schools,

etc............how will she get those services??

my 2 cents...

~~Angel~~

Mom to 14 mosaic Down syndrome/Hirschsprung's Disease

Lance 19, Tyler 15, 12

Jaeda 11 & Shayne 5

************************************** See what's new at http://www.aol.com

October 26, 2007

Hi Sue

You are not alone in this! This seems to be the main question that comes up at

IMDSA! The doctor probably didn't mean " behaviors " as in " she is going to act

bad " . More than likely the doctor meant that if she acted " differently " or had

trouble with certain things, then you would have to explain the problem to

people (mainly teachers)

When Tim was younger, I did not tell anyone about his MDS. I wanted them to

know him for who he was, not what he had. I wanted them to not limit him because

I had seen times where people who knew about his dx automatically expected less

from him. When I did tell people, I first waited several weeks for them to get

to know him. That way, they expected him to act like everyone else and learn

like everyone else. Then, I would tell them about his MDS (especially teachers)

and I would tell them what I expected from him and what I expected from the

teachers. There were times that I did not tell the teachers at all. These times,

I can see where it was beneficial in one way (they expected the same from him as

they did everyone else) and hurtful in other ways (if he acted differently or

had trouble with his work they treated him too harshly for something he was

completely incapable of helping)

So, It is a preference for each family to decide and no solution is the

" wrong " solution! You do what is best for you and your family!

Tim and I talked about this situation (about not telling) with one of our

members, Sosnoski on National Public Radio's This American Life. If you

are interested in hearing our story, you can go to

http://www.thislife.org/Radio_Episode.aspx?sched=1128

and click the orange speaker button. (our story is right after the

introduction on " mouse traps " .

I hope it helps.

Kristy

Sue wrote:

Hi Everyone,

I have a bit of a dilemma. We were at the doctors last week.. We went to a

genetic specialist and to the ds clinic. On doctor suggested we do not tell

anyone that Isabella has mds and xxx, so it would not label her. The other

doctor said we would always have to be explaining her behavior. Isabella does

not have the physical characteristics of ds so I guess the one doctor figured

nobody would know. I am not ashamed she has mds or xxx, this was out of our

control and we love her just the same, maybe more if that is possible. I am

still trying to figure out what the other doctor meant by explaining her

behavior when she get older. Just what does she think she will act like or do? I

have told my family and close friends its not some dirty little secret, yet now

I am afraid it will label her. Any suggestions on what all of you have done in

this situation.

Sue

__________________________________________________

November 16, 2007

Here is a link to www.snopes.com regarding a similar story floating

around about the re-use of plastic water bottles. Apparently, it's just

another one of those urban legends.

http://www.snopes.com/medical/toxins/petbottles.asp

A.

Special Educator

Simon Kenton High School

(859)960-0348

cynthia.jones@...

" Deaf People Can Do Anything Except Hear! " (I. King Jordan)

Confidentiality Notice - This email is intended only for the person to

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the sender immediately.

(unknown)

I know everyday they are recalling different things. This is not a

recall but is scared me enough to change to glass bottles. I just

wanted to pass this along to those of you that have babies.

Products marketed for infants and children are not always completely

safe for their use. Many contain toxic chemicals that may have

detrimental health impacts for children exposed during critical stages

of development. In this report, we analyze the extent to which five

popular brands of baby bottles leach bisphenol A, a developmental,

neural, and reproductive toxicant, into liquids coming into contact with

them. We found that all five brands leach bisphenol A at dangerous

levels found to cause harm in numerous laboratory animal studies.

California and the U.S. should reform chemical policy to ensure that all

products on the market are safe for children.

Bisphenol A is a Developmental, Neural, and Reproductive Toxicant

Scientists have linked very low doses of bisphenol A exposure to

cancers, impaired immune function, early onset of puberty, obesity,

diabetes, and hyperactivity, among other problems.

For example, in one recent study, a single, low dose of bisphenol A

administered to a newborn rat resulted in hyperactive behavior.

Exposure to Bisphenol A is Widespread

Bisphenol A is most commonly used to make clear polycarbonate plastic

for consumer products, such as baby bottles. Through use, this plastic

breaks down and leaches bisphenol A into liquids and food to which it

comes into contact.

The U.S. Centers for Disease Control and Prevention found bisphenol A in

the urine of over 95% of people they tested.

Alarmingly, the median level of bisphenol A in humans is higher than the

level that causes adverse effects in animal studies.

Popular Baby Bottles Sold in California Leach Bisphenol A at Harmful

Levels

Based on a consumer survey of the most popular baby bottle brands on the

market, we selected five bottle types to determine the amount of

leaching from each bottle. We found that the bottles tested from all

five brands leached bisphenol A at levels found to cause harm in

numerous laboratory studies, including:

* Avent

* Dr. Brown's

* Evenflo

* Gerber

* Playtex

Recommendations for Parents

Parents have the right to know about chemicals in the products they

purchase for their children. In the absence of good government

regulations, but armed with the knowledge that some chemicals are a

cause for concern, parents can take a few simple actions to limit their

child's exposure to these and other toxic chemicals.

At the store, parents should select baby bottles that are made from

glass or a safer non-polycarbonate plastic. At home, parents should

avoid washing plastic dishware with harsh dishwashing soap and hot

water, which may allow chemicals to leach out of the plastic. For a

useful tip sheet, parents should visit our toy safety page.

Recommendations for Policymakers

Parents cannot deal with these issues alone. The government must ensure

the safety of all products on the market for children. California and

the U.S. should:

Phase Out Hazardous Chemicals

Based on the weight of the scientific evidence showing the harm caused

by exposure to bisphenol A, the government should act now. Given that

data from the U.S. Centers for Disease Control and Prevention show that

bisphenol A is present in humans at levels found to be harmful in

laboratory studies, California and the U.S. should phase out the use of

bisphenol A, especially in products used by children.

Inform Consumers about the Presence of Dangerous Chemicals

Parents currently have little information to inform their decisions when

purchasing products for their family. Manufacturers should be required

to label children's products with the name of any potentially dangerous

chemical and the specific health risks associated with the chemical.

Reform Chemicals Policy

Currently, manufacturers can put chemicals on the market without proving

they are safe. Chemical manufacturers should be required to provide all

hazard and health-effects information to the government so agencies can

begin to assess the thousands of chemicals currently on the market for

which little or inadequate data are available. Next, pre-market hazard

and health-effects testing should be required for all new chemicals

before they are introduced into commerce. Finally, the California

Environmental Protection Agency must have the authority to protect

public health by banning or restricting the use of a chemical if

evidence shows that it can harm human health.

November 17, 2007

Sue

I totally agree with you. The misuse of this word is heartbreaking. IMDSA

focused on the misuse of the word retarded in our latest issue of MOSAIC WORLD.

Were you able to read that along with the Parent's Perspective that did?

(I can't remember if you receive our newsletter or not) If you did read it, what

did you think about the article?

Kristy

dewardjohnson@... wrote:

Just yesterday I posted a note about the word " retard " being used.

Don't you know that today I found it being used in a very derogatory way in the

" heading " of a posting in a group in CafeMom. Needless to say I blasted the

person for using this terminology and posted a note in my other DS groups. I

also sent a note to the group leader where this word was posted. They block or

lock any other terminology that would be offensive to any other group, but not

this? Why do we just stand by and let this phrase be used without causing a

stir. I have never liked that word. I watched my best friend have to defend her

brother (brain damaged) her whole life and what a struggle it was for her and

her brother. She is now 41 and her childhood and that word still haunts her! I

for one do not want my daughter growing up in a society that feels this word is

okay to use.

I am sorry for ranting again, it is just that my blood is boiling.

Sue

November 17, 2007

No unfortunately I have not been able to join the IMDSA group yet. Hopefully

after Christmas I will.

I am so glad you agree with me though.

Sue

-------------- Original message --------------

Sue

I totally agree with you. The misuse of this word is heartbreaking. IMDSA

focused on the misuse of the word retarded in our latest issue of MOSAIC WORLD.

Were you able to read that along with the Parent's Perspective that did?

(I can't remember if you receive our newsletter or not) If you did read it, what

did you think about the article?

Kristy

dewardjohnson@... wrote:

Just yesterday I posted a note about the word " retard " being used. Don't you

know that today I found it being used in a very derogatory way in the