New Member

Report post · January 12, 2003

> Hi ,

I have to say that I am very lucky to be born in Holland because there are

a lot of facilities for the handicapped to make sure that they are able to

live on their own.

First of all the state provides you with an income if you are invalid for

80/100%. This is not a very high amount but it is for a family 100 % of the

minimum-wage. That's about 1200 EURO per month. This is not including

additional subsidies for rent and child support.

Second, Most of the extra cost you make because of your handicap are

also paid by the state. For example cost for changing the house ( to make

it accessable for a wheelchair )

There are also different types of housing projects. It is possible to rent a

house, made accessable for a wheelchair by the housing corporation.

These corporations are obliged to offer a certain number of accessable

houses.

There are also FOCUS-houses. These are houses where the people can

live on their own but have professional help within their reach 24 hours

per day.

I think there are some more possibilities I don't know about :-)

I am in the position that I live in a house owned by my family so I don't have

these problems but in Holland there is always a way if you want to live

independently.

I used to own my own company but I am not working anymore. I needed

too much energy for work and it wasn't worth it. I have my family now and I

would like to use all my strength to give them a family life as normal as

possible.

I hope I answered your question,

Take care,

Eddy

Report post · January 12, 2003

Hello Eddy, you have a beautiful family. Congratulations on your little

baby boy, he is very cute.

I'd like to ask again that anyone that could, to please send me pictures and

a short bio. so that my fundraiser will work well. I need alot of people.

Thanks to those that already responded, but I need more! I won't use anyone

without prior permission.

Thanks,

Susi

New member

> Hi guys,

>

> I am already reading this group for a while but I never posted a message.

> First I would like to introduce myself. My name is Eddy and I live in

Holland.

> I have SMA type III. I am living together with my girlfriend and god

blessed

> us with a beautiful baby boy last october. I will also post some pictures

so

> you can imagne a face with a name :-)

> If somebody would like to see my family album, they can see it here :

> http://photos./eddy_thailand

>

> Eddy

>

Report post · January 12, 2003

Welcome, Eddy. I'd definitely like to visit Holland someday, Amsterdam

especially!

Report post · January 17, 2003

Edna- you can certainly give Bill our e-mail addy.

The MDA coordinator (not sure if that is her exact title) is McGuire; the

# I call to get to her office is 410-494-7072.

I was also given some contacts for " respite care resources " from a case

manager/social worker @ Mt. Washington Pediatric Hospital.

*Developmental Disabilities Administration 410-902-4517

*Abilities Network/Epilepsy Foundation

410-828-7700 or 1-800-492-2523 (headquarters)

*United Cerebral Palsy Assoc.

1-800-451-2452 or 410-484-4540

contact:Arnetta Gibson 410-242-9010 x233

*Creative Options 410-780-4095

contact: Tim Rache, Director of Support Services

*Caring Network 866-227-4644 (toll free)

I have only been in contact with McGuire not any of the other resources

yet. I am not sure exactly what services are available or what Bill might be

looking for but I figured it would give him a starting place. How about

insurance/SSI/ Medicare?

Hope this info is helpful and my apologies for taking so long to get back to

you ~ life is finally getting back to " normal " around here and Callie is doing

great since coming home from her first hospital visit. Praise God!!

new member

Hello!

I am 53 and live in Florida. I met a very wonderful 24 year old young man

on my group for caregivers site. He has SMA and was being cared for

by his grandmother until her recent death. Now he is trying desperately to

find all the services he may be entitled to in Central land.

I am hoping that some of you can help me to help him find out who does what

and how to get things rolling. He has a case manager but he is not very

responsive (that was being kind!). I think your group would be very helpful

to him in many ways.

Please let me know how you got services and what types you have , especially

if you are in land.

Edna

ednawinona@...

Report post · January 20, 2003

Welcome Therese,

This is a great group of people! I am sure we can teach and learn from each

other. Sounds like you are a busy person. I hope you work out the respite

situation. Our area programs are great about respite, if you aren't working

that is. We are offered, through 4 different agencies, many more hours a

week than we use. I know some people on the list get no respite services.

I'm looking forward to hearing about all of your experiences with .

Gail :-)

Gail-Mom to Seth 6 ds/asd/pica, jo 10 the gymnast, 12 the

pianist, 25 beautiful but a pain, Jen 27 the wallet breaker, Grandma to

Errick 6 ALL boy and wife to , my hero.

<< Hello,

My name is Therese. My daughter , has DS and has recently been

diagnosed with PDD (PDDNOS). I have been tuning into the group posts for the

last few months as we went through the diagnostic process. is 12 years

old and I feel a little guilty that she has just been diagnosed. It was

actually a new teacher this year that suggested that displayed many

autistic behaviors. I found the Disabilities Solutions Issue on DS-ASD and

Joan¹s article and that was a turning point for us. (Thanks Joan!) Up

until then, I knew was not like other DS kids but I didn¹t have a clue

as to why.

We live in Seattle, Washington with Ken (Dad), and ¹s two sisters,

(18 yo- away at college) and (15 yo). attends a

public middle school here in a self-contained classroom that uses

life-skills and visually based communication models. Our big focus

educationally is communication, behaviorally it is getting her to socially

interact with others. is non-verbal and uses a communication device

with some success, especially when highly motivated by things like, ordering

at Mcs, etc. She loves every Disney movie ever made, listening to

music, drawing, cooking, swimming, bowling, boating, going to the ocean

beach and playing with her dog, Cody.

My biggest challenges are handling ¹s care and juggling a full-time job

while my support systems are eroding. My mother in law, who used to be my

³crisis² sitter is now in a nursing home. ( My side of the family all live

1500 miles away.) My oldest daughter, who adores , is now away at

college and my 15 year old helps out but is so involved with her own

activities now that she¹s seldom available. So I need to make that big leap

of faith into getting a respite care system set up soon. I¹m having a tough

time with it.

At first, this dual diagnosis made me very sad but somewhat relieved to

finally know what was really going on with my daughter. It also helps to

know there are other parents out there facing similar challenges. I look

forward to getting to know all of you and your children.

Therese

Mom to (DS-PDD) >>

Report post · January 20, 2003

Hi Therese,

My name is a and we're neighbors! I live in Everett so I'm maybe a

half hour away. My Hannah will be six on Wednesday and she was diagnosed last

year as being Autistic there at Children's in Seattle. We are also non-verbal

and our big thing that happened at Thanksgiving is that Hannah has finally

learned to suck. She has been using a g-tube since birth for all her liquids.

I can't believe that I actually packed up all the equipment from my kitchen

counter and put it away - the only bad thing is that I'll see less of the UPS

man since he won't be bringing so many medical supplies to the house anymore!

: ) Just kidding ladies!

I also have a 12 year old son who has Tourette's syndrome and

Obsessive-Compulsive Disorder and an almost 8 year old daughter who just has

middle-child syndrome!

Well, glad you're here. Hope you can find the help and support you need.

Blessings,

a

Report post · January 20, 2003

Welcome to " Stilligan's Island " support group Pat!

It sounds as if you are no stranger to this disease.

I was diagnosed in 1987. (although I had the disease

many years before that.) I am sorry for you that your

remission of 6 years ended, but hopefully with some

of the newer meds now available, you will get back

into another remission, even it it is with meds. What

do you think caused the disease to come back after

6 years??

Isn't it great to find others with this Stills Disease??

Not that we are happy that others are ill..just that it

makes the " dragon " a little easier to drag around

day after day, when we know we aren't doing it alone.

You probably already know how informative, and

wonderful this group is. We even have fun from

time to time.

Where do you live Pat?? Do you live alone or with

family?

Anyhow ...again, welcome!!!

~~tricia~~

Wisconsin

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

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

-- new member

Hi my name is Pat, I have been a lurker for the past 3 weeks. I love

this site already. I was diagosned in 1988, by a rhemi, and I really

thought I beat this disease. For those of you out there that think a

remission wont come, please have faith, it very well may...I was in

remission for at least 6 years!!!(you really do lose track when you

are feeling great as to the length of time) I mean a full

remission..no meds..this was after 2 hip surgeries(I had a core

decompression done in both hips) this was due to AVN of both hips

from the high dose of predisone I was on. When I finally came off

that and tried gold shots(had severe reaction) then went to MTX for 2

1/2 years prior to the remission. Gradually after 6 years of a

healthy life, it slowly started to come back. I had my share of

medrol pacs and finally celebrex for the past few years and in Aug of

2002, I really started to flare and have been since. I have started

on remicade in Oct. some improvement, but still have the temps and

fatigue off and on. I dont have mtx in it yet, not sure why..I will

call rhemi tomorrow(hes been away) after everything i have read about

remicade with mtx, maybe that will help.

I just wanted to say Hi to everyone and please hang in there.

Thank you for this web site and for all the sharing it really does

help a lot!(where were you in 1988?)

Pat

Report post · January 20, 2003

Welcome Pat. It is always good to know there are many that

understand itsn't it? I use the nickname Melt, yes stands for

PattyMelt :0) I have had Stills since 1977, what were you doing

then? In 1988 I was fortunate to be working, and doing well. Since

then I have had more activity also but always hanging in there with

the best attitude I can muster. Enough about me, again Welcome, we

shall look forward to knowing a new friend. Melt in So.Cal.

> Hi my name is Pat, I have been a lurker for the past 3 weeks. I

love

> this site already.

Report post · January 20, 2003

> Hi Therese....

It's so nice to meet you! We live in Manson, WA on Lake Chelan. I

know there are other Washingtonians on this list also. I hope they

write. My daughter, 7, has not been dx'd with ASD, but shows

many charactaristics. She's doing terrifically though, especially

since we started a bunch of sensory stuff with her. She's verbal,

but hard to understand. Says 2 to 3 word sentences. This group is

great! I hope you'll read and join in a lot. I think we all love to

hear about every one else's kids. We leave for Puerta Villarta

tomorrow, so if I don't respond soon, that's why. WELCOME!

mom to 7 ds, Ty 9 and Kelsey 11.

Hello,

>

> My name is Therese. My daughter , has DS and has recently been

> diagnosed with PDD (PDDNOS). I have been tuning into the group

posts for the

> last few months as we went through the diagnostic process. is

12 years

> old and I feel a little guilty that she has just been diagnosed.

It was

> actually a new teacher this year that suggested that

displayed many

> autistic behaviors. I found the Disabilities Solutions Issue on DS-

ASD and

> Joan¹s article and that was a turning point for us. (Thanks

Joan!) Up

> until then, I knew was not like other DS kids but I didn¹t

have a clue

> as to why.

>

> We live in Seattle, Washington with Ken (Dad), and ¹s two

sisters,

> (18 yo- away at college) and (15 yo).

attends a

> public middle school here in a self-contained classroom that uses

> life-skills and visually based communication models. Our big focus

> educationally is communication, behaviorally it is getting her to

socially

> interact with others. is non-verbal and uses a communication

device

> with some success, especially when highly motivated by things like,

ordering

> at Mcs, etc. She loves every Disney movie ever made,

listening to

> music, drawing, cooking, swimming, bowling, boating, going to the

ocean

> beach and playing with her dog, Cody.

>

> My biggest challenges are handling ¹s care and juggling a full-

time job

> while my support systems are eroding. My mother in law, who used

to be my

> ³crisis² sitter is now in a nursing home. ( My side of the family

all live

> 1500 miles away.) My oldest daughter, who adores , is now away

at

> college and my 15 year old helps out but is so involved with her own

> activities now that she¹s seldom available. So I need to make that

big leap

> of faith into getting a respite care system set up soon. I¹m

having a tough

> time with it.

>

> At first, this dual diagnosis made me very sad but somewhat

relieved to

> finally know what was really going on with my daughter. It also

helps to

> know there are other parents out there facing similar challenges.

I look

> forward to getting to know all of you and your children.

>

> Therese

>

> Mom to (DS-PDD)

>

Report post · January 20, 2003

Hi Tricia, I really dont know what caused the remission to end...I

asked myself that question over and over..work? sadness..I have 2

close friends that lost their son(17 yrs old) and the other one lost

her son in law of 5 months. . so there was a lot of sadness, Im not

sure...buts its back... I live in MA with my husband of 30 years(this

Oct.)and my 16 yr old daughter. I have 2 sons that live next door to

me, one is married. Its nice to have someone to talk to about the

illness..

Thank you for welcoming me to the group...How about your self ..do

you live with family?

Bye for now

Pat

>

> Welcome to " Stilligan's Island " support group Pat!

> It sounds as if you are no stranger to this disease.

> I was diagnosed in 1987. (although I had the disease

> many years before that.) I am sorry for you that your

> remission of 6 years ended, but hopefully with some

> of the newer meds now available, you will get back

> into another remission, even it it is with meds. What

> do you think caused the disease to come back after

> 6 years??

>

> Isn't it great to find others with this Stills Disease??

> Not that we are happy that others are ill..just that it

> makes the " dragon " a little easier to drag around

> day after day, when we know we aren't doing it alone.

>

> You probably already know how informative, and

> wonderful this group is. We even have fun from

> time to time.

>

> Where do you live Pat?? Do you live alone or with

> family?

>

> Anyhow ...again, welcome!!!

>

> ~~tricia~~

>

> Wisconsin

>

]

Report post · January 20, 2003

Hi melt, thanks for the welcome, yes it is good to know that there

are people who understand the illness..1977..hmmmmm.I had just had my

first son in 1976....

...did they dx you right away? Im just interested because it took my

primary care forever to refer me to a rhemy, who by the way dx me

almost immed.

I also look forward to making many new friends here and enjoying your

company.

thanks,Pat

> > Hi my name is Pat, I have been a lurker for the past 3 weeks. I

> love

> > this site already.

Report post · January 21, 2003

Welcome Pat!!!!!!

Better late then never, ( regarding 1988)These people are fabulous, and

nuts. { in a good way of course.} Let me know if you need anything!

See ya around the wading pool.

G.otF.M.

Report post · January 21, 2003

Hi Pat, you can reply to a message or post a new one but the easiest is to

reply to someone's post but remember to trim the message to the part you are

answering and delete the rest so the new email doesn't compile so much

clutter in others mail boxes.

Yes, my doctors called in my rheumy after 2 1/2 weeks in the hospital and he

diagnosed me right away. He was from San Diego, CA and except for a couple

of years when I moved has been my doctor, my savior ever since. With the

new medications maybe yours and mine will settle down again. I really do

believe stress is a major factor with this disease. Till soon, Melt

Re: new member

> ..did they dx you right away? Im just interested because it took my

> primary care forever to refer me to a rhemy, who by the way dx me

> almost immed.

Report post · January 21, 2003

Hello Pat,

and a very special welcome to you and I am glad that you have joined this

incredible support group. I am so sorry that you have been dealing with

Stills for so long, but it was very comforting to read that you have also

experienced a remission time of 6 years. I will remember those words and

hope for the same. Thank you for being so positive. I look forward to

getting to know you better.

Sincerely, Sue #2