RE: A Sample letter to NIH

[Guest guest]

So you have to have some sort of recommendation from a doctor to be considered

by this NIH?

>

> Subject: A Sample letter to NIH

> To: Soundsensitivity

> Date: Saturday, September 6, 2008, 1:41 PM

> Below is a sample of a letter that a member from this site

> gave to her

> doctor to put on his letterhead. She thought that it might

> be a help to

> anyone trying to apply. She was able to get hers sent off

> a couple of days

> ago, so the ball is rolling--lets keep it rolling!

>

>

>

> So far I have heard from only about 5 people who say they

> are going to

> apply. Come on--we need at least 50. This is an important

> opportunity. WE

> HAVE THEIR INTEREST and we don't want to lose it!! If

> we sent in 50

> applications, there is no way they could ignore this

> problem.

>

>

>

> Email me for all the info regarding what you need to do.

> My email is

> k.howe@.... I would be happy to help you in any

> way needed if you

> do it. I even live somewhat close to Bethesda if you need

> a quiet place to

> stay!! Please just do it--this is important!!

>

>

>

> Kathy Howe

>

>

>

> TO: NIH Undiagnosed Diseases Program

>

> 10 Center Drive – MSC 1951

>

> Building 10, Room 10C103

>

> Bethesda MD 20892-1851

>

>

>

> RE: patient name / Soft Sound Sensitivity

>

> Date: September 4, 2008

>

> To Whom It May Concern,

>

> My patient patient name presents with disturbing and

> unusual symptoms which

> do not lessen with prescription drug therapy nor

> psychological counseling.

> I find this case to be extremely unusual and do not find

> myself in a

> position to delve into the cause or the cure for this. I

> feel she would be

> an excellent and motivated candidate for any study which

> might result in an

> alleviation of her difficulty which impacts every part of

> life. It has

> affected her interpersonal relationships and her

> work/career.

>

> I am the primary care physician for patient name. I will

> provide ongoing

> consultation to the NIH team and will provide any

> appropriate follow-up care

> for this patient.

>

> patient name tells me she has been suffering with this

> condition since

> approximately age 8 when it suddenly became impossible to

> tolerate certain

> sounds. These sounds create a rage and panic sensation:

> classic “fight or

> flight†which feels barely controllable. Only by her

> removing herself from

> the stimulus or by acting out in a semi-violent manner

> stops the rapid

> heartbeat, adrenaline flushing and emotive feelings of rage

> and panic.

> Breathing sounds, mouth noises and footsteps are her main

> sources of

> turmoil, though children playing, voices in the distance,

> power equipment

> and a myriad of other sounds affect her the same way. The

> sounds which

> bring on the feelings do have one thing in common: they are

> sounds which are

> almost all background sounds: unnoticeable by most but

> patient name is

> unable to escape hearing them. The issues she has seem to

> be growing: she

> has developed more and more triggers over the years and

> continues to do so.

> She is no longer employed in her 25-year career of

> Financial Services

> Management as of 3 years ago.

>

> patient name currently takes Clonazepam (Klonopin) .5 mg

> 2X day and 20

> milligrams Fluoxetine (Prozac) 1X day. She has been on this

> regimen since

> September 1992 which was three years after giving up

> alcohol. This drug

> treatment has lessened the intensity of the feelings of

> uncontrollability -

> but has not affected the feelings of rage and panic. She

> is otherwise in

> excellent physical health. She presented to me after

> finding information

> on the internet: others suffer from this same condition.

> This appears to

> be a physical issue: not psychological.

>

> My office address is:

> ­­­­______________________________email is

> ________________________

>

> patient name address is:

>

>

>

> She has seen the following doctors/practitioners to try to

> find answers to

> her problem.

>

> Dates are approximate:

>

> 1988 - 1999 doctor name and address (psychology)

>

> 1992 – 1999 doctor name and address

> (psychopharmacology)

>

> 1999 doctor name and address (breath and body work)

>

> 2003 – 2007 doctor name and address (Neurofeedback )

[Guest guest]

No, actually you just have to have a doctor who will write a letter saying they will treat you if the NIH finds anything wrong with you. It's just protocol to have a follow up doctor.

I was upset that I wouldn't be able to find a doctor who feels my daughter has something actually wrong with her and that no doctor would "refer" her for the study, so I emailed them a kind of grumpy email and then Colleen from the NIH called me. She said that the doctor could say that they think you are crazy or a hypochondriac, but they just need to write a letter saying that if the study really does turn something up, they will treat you. (Not that any of our doctors would probably be able to do anything, but it's just for back up).

She also said that they had received many emails regarding this condition and the doctors were interested in it because of all the similarities in our stories. But she just kept saying that we have to go through the process and apply. I really think they want to do a study on this but they need us to apply.

If you get a doctor who agrees to send it in, try to get any other relevant test results or medical records to send in on your own. Also, send them your story again to let them have all the information about your history with 4s. Let me know if you want anymore information and if you are going to apply.

Thanks,

Kathy

A Sample letter to NIH> To: Soundsensitivity > Date: Saturday, September 6, 2008, 1:41 PM> Below is a sample of a letter that a member from this site> gave to her> doctor to put on his letterhead. She thought that it might> be a help to> anyone trying to apply. She was able to get hers sent off> a couple of days> ago, so the ball is rolling--lets keep it rolling!> > > > So far I have heard from only about 5 people who say they> are going to> apply. Come on--we need at least 50. This is an important> opportunity. WE> HAVE THEIR INTEREST and we don't want to lose it!! If> we sent in 50> applications, there is no way they could ignore this> problem.> > > > Email me for all the info regarding what you need to do. > My email is> k.howecomcast (DOT) net. I would be happy to help you in any> way needed if you> do it. I even live somewhat close to Bethesda if you need> a quiet place to> stay!! Please just do it--this is important!!> > > > Kathy Howe> > > > TO: NIH Undiagnosed Diseases Program> > 10 Center Drive – MSC 1951> > Building 10, Room 10C103> > Bethesda MD 20892-1851> > > > RE: patient name / Soft Sound Sensitivity> > Date: September 4, 2008> > To Whom It May Concern,> > My patient patient name presents with disturbing and> unusual symptoms which> do not lessen with prescription drug therapy nor> psychological counseling.> I find this case to be extremely unusual and do not find> myself in a> position to delve into the cause or the cure for this. I> feel she would be> an excellent and motivated candidate for any study which> might result in an> alleviation of her difficulty which impacts every part of> life. It has> affected her interpersonal relationships and her> work/career.> > I am the primary care physician for patient name. I will> provide ongoing> consultation to the NIH team and will provide any> appropriate follow-up care> for this patient.> > patient name tells me she has been suffering with this> condition since> approximately age 8 when it suddenly became impossible to> tolerate certain> sounds. These sounds create a rage and panic sensation:> classic “fight or> flight†which feels barely controllable. Only by her> removing herself from> the stimulus or by acting out in a semi-violent manner> stops the rapid> heartbeat, adrenaline flushing and emotive feelings of rage> and panic.> Breathing sounds, mouth noises and footsteps are her main> sources of> turmoil, though children playing, voices in the distance,> power equipment> and a myriad of other sounds affect her the same way. The> sounds which> bring on the feelings do have one thing in common: they are> sounds which are> almost all background sounds: unnoticeable by most but> patient name is> unable to escape hearing them. The issues she has seem to> be growing: she> has developed more and more triggers over the years and> continues to do so.> She is no longer employed in her 25-year career of> Financial Services> Management as of 3 years ago.> > patient name currently takes Clonazepam (Klonopin) .5 mg> 2X day and 20> milligrams Fluoxetine (Prozac) 1X day. She has been on this> regimen since> September 1992 which was three years after giving up> alcohol. This drug> treatment has lessened the intensity of the feelings of> uncontrollability -> but has not affected the feelings of rage and panic. She> is otherwise in> excellent physical health. She presented to me after> finding information> on the internet: others suffer from this same condition. > This appears to> be a physical issue: not psychological.> > My office address is: > ­­­­______________________________email is> ________________________> > patient name address is:> > > > She has seen the following doctors/practitioners to try to> find answers to> her problem.> > Dates are approximate:> > 1988 - 1999 doctor name and address (psychology)> > 1992 – 1999 doctor name and address> (psychopharmacology)> > 1999 doctor name and address (breath and body work)> > 2003 – 2007 doctor name and address (Neurofeedback )

[Guest guest]

I would have no problem actually sending in a letter, but I have never seen a

doctor for 4s. Not even to ask if they knew what it was or anything like that,

and I don't think I really want to go down that road with any doctor...But I

really want 4s gone so I'll keep looking for a doctor.

>

> >

> > Subject: A Sample letter to NIH

> > To: Soundsensitivity

> > Date: Saturday, September 6, 2008, 1:41 PM

> > Below is a sample of a letter that a member from

> this site

> > gave to her

> > doctor to put on his letterhead. She thought that it

> might

> > be a help to

> > anyone trying to apply. She was able to get hers

> sent off

> > a couple of days

> > ago, so the ball is rolling--lets keep it rolling!

> >

> >

> >

> > So far I have heard from only about 5 people who say

> they

> > are going to

> > apply. Come on--we need at least 50. This is an

> important

> > opportunity. WE

> > HAVE THEIR INTEREST and we don't want to lose

> it!! If

> > we sent in 50

> > applications, there is no way they could ignore this

> > problem.

> >

> >

> >

> > Email me for all the info regarding what you need to

> do.

> > My email is

> > k.howe@.... I would be happy to help you in

> any

> > way needed if you

> > do it. I even live somewhat close to Bethesda if you

> need

> > a quiet place to

> > stay!! Please just do it--this is important!!

> >

> >

> >

> > Kathy Howe

> >

> >

> >

> > TO: NIH Undiagnosed Diseases Program

> >

> > 10 Center Drive – MSC 1951

> >

> > Building 10, Room 10C103

> >

> > Bethesda MD 20892-1851

> >

> >

> >

> > RE: patient name / Soft Sound Sensitivity

> >

> > Date: September 4, 2008

> >

> > To Whom It May Concern,

> >

> > My patient patient name presents with disturbing and

> > unusual symptoms which

> > do not lessen with prescription drug therapy nor

> > psychological counseling.

> > I find this case to be extremely unusual and do not

> find

> > myself in a

> > position to delve into the cause or the cure for

> this. I

> > feel she would be

> > an excellent and motivated candidate for any study

> which

> > might result in an

> > alleviation of her difficulty which impacts every

> part of

> > life. It has

> > affected her interpersonal relationships and her

> > work/career.

> >

> > I am the primary care physician for patient name. I

> will

> > provide ongoing

> > consultation to the NIH team and will provide any

> > appropriate follow-up care

> > for this patient.

> >

> > patient name tells me she has been suffering with

> this

> > condition since

> > approximately age 8 when it suddenly became

> impossible to

> > tolerate certain

> > sounds. These sounds create a rage and panic

> sensation:

> > classic “fight or

> > flight†which feels barely controllable. Only by

> her

> > removing herself from

> > the stimulus or by acting out in a semi-violent

> manner

> > stops the rapid

> > heartbeat, adrenaline flushing and emotive feelings

> of rage

> > and panic.

> > Breathing sounds, mouth noises and footsteps are her

> main

> > sources of

> > turmoil, though children playing, voices in the

> distance,

> > power equipment

> > and a myriad of other sounds affect her the same

> way. The

> > sounds which

> > bring on the feelings do have one thing in common:

> they are

> > sounds which are

> > almost all background sounds: unnoticeable by most

> but

> > patient name is

> > unable to escape hearing them. The issues she has

> seem to

> > be growing: she

> > has developed more and more triggers over the years

> and

> > continues to do so.

> > She is no longer employed in her 25-year career of

> > Financial Services

> > Management as of 3 years ago.

> >

> > patient name currently takes Clonazepam (Klonopin)

> .5 mg

> > 2X day and 20

> > milligrams Fluoxetine (Prozac) 1X day. She has been

> on this

> > regimen since

> > September 1992 which was three years after giving up

> > alcohol. This drug

> > treatment has lessened the intensity of the feelings

> of

> > uncontrollability -

> > but has not affected the feelings of rage and panic.

> She

> > is otherwise in

> > excellent physical health. She presented to me after

> > finding information

> > on the internet: others suffer from this same

> condition.

> > This appears to

> > be a physical issue: not psychological.

> >

> > My office address is:

> > ­­­­______________________________email is

> > ________________________

> >

> > patient name address is:

> >

> >

> >

> > She has seen the following doctors/practitioners to

> try to

> > find answers to

> > her problem.

> >

> > Dates are approximate:

> >

> > 1988 - 1999 doctor name and address (psychology)

> >

> > 1992 – 1999 doctor name and address

> > (psychopharmacology)

> >

> > 1999 doctor name and address (breath and body work)

> >

> > 2003 – 2007 doctor name and address (Neurofeedback

> )

[Guest guest]

In the sample letter, there is a section that states:

This drug treatment has lessened the intensity of the feelings of

uncontrollability - but has not affected the feelings of rage and

panic.

I'm not sure who wrote this, but please let me know what this means.

It is a little vague. I'm asking for two reasons. First - that line,

if anyone else uses this letter, would probably need edited for

better clarity. And last -- I, myself, am interested in this drug

combo, if it works.

How can you feel panic and rage and yet still feel " in control? " You

said the feelings of uncontrollability have " lessened. " How? I am

considering another drug regimen, and if this combo of drugs is

working for you, I'd like to try it as well. For me, the biggest

problem of 4S is the rage and panic, both of which are

uncontrollable. The only thing I'm able to " control " is how I react

while suffering from this panic and rage, ie. I do not kill anyone or

scream at the top of my lungs when someone is making a trigger

sound. But it doesn't make it any easier. It's still torture.

Thanks,

>

>

>

>

>

> Below is a sample of a letter that a member from this site gave to

her

> doctor to put on his letterhead. She thought that it might be a

help to

> anyone trying to apply. She was able to get hers sent off a couple

of days

> ago, so the ball is rolling--lets keep it rolling!

>

>

>

> So far I have heard from only about 5 people who say they are going

to

> apply. Come on--we need at least 50. This is an important

opportunity. WE

> HAVE THEIR INTEREST and we don't want to lose it!! If we sent in 50

> applications, there is no way they could ignore this problem.

>

>

>

> Email me for all the info regarding what you need to do. My email

is

> k.howe@... I would be happy to help you in any way needed if you

> do it. I even live somewhat close to Bethesda if you need a quiet

place to

> stay!! Please just do it--this is important!!

>

>

>

> Kathy Howe

>

>

>

> TO: NIH Undiagnosed Diseases Program

>

> 10 Center Drive – MSC 1951

>

> Building 10, Room 10C103

>

> Bethesda MD 20892-1851

>

>

>

> RE: patient name / Soft Sound Sensitivity

>

> Date: September 4, 2008

>

> To Whom It May Concern,

>

> My patient patient name presents with disturbing and unusual

symptoms which

> do not lessen with prescription drug therapy nor psychological

counseling.

> I find this case to be extremely unusual and do not find myself in a

> position to delve into the cause or the cure for this. I feel she

would be

> an excellent and motivated candidate for any study which might

result in an

> alleviation of her difficulty which impacts every part of life. It

has

> affected her interpersonal relationships and her work/career.

>

> I am the primary care physician for patient name. I will provide

ongoing

> consultation to the NIH team and will provide any appropriate

follow-up care

> for this patient.

>

> patient name tells me she has been suffering with this condition

since

> approximately age 8 when it suddenly became impossible to tolerate

certain

> sounds. These sounds create a rage and panic sensation:

classic " fight or

> flight " which feels barely controllable. Only by her removing

herself from

> the stimulus or by acting out in a semi-violent manner stops the

rapid

> heartbeat, adrenaline flushing and emotive feelings of rage and

panic.

> Breathing sounds, mouth noises and footsteps are her main sources of

> turmoil, though children playing, voices in the distance, power

equipment

> and a myriad of other sounds affect her the same way. The sounds

which

> bring on the feelings do have one thing in common: they are sounds

which are

> almost all background sounds: unnoticeable by most but patient name

is

> unable to escape hearing them. The issues she has seem to be

growing: she

> has developed more and more triggers over the years and continues

to do so.

> She is no longer employed in her 25-year career of Financial

Services

> Management as of 3 years ago.

>

> patient name currently takes Clonazepam (Klonopin) .5 mg 2X day

and 20

> milligrams Fluoxetine (Prozac) 1X day. She has been on this regimen

since

> September 1992 which was three years after giving up alcohol. This

drug

> treatment has lessened the intensity of the feelings of

uncontrollability -

> but has not affected the feelings of rage and panic. She is

otherwise in

> excellent physical health. She presented to me after finding

information

> on the internet: others suffer from this same condition. This

appears to

> be a physical issue: not psychological.

>

> My office address is: ­­­­______________________________email is

> ________________________

>

> patient name address is:

>

>

>

> She has seen the following doctors/practitioners to try to find

answers to

> her problem.

>

> Dates are approximate:

>

> 1988 - 1999 doctor name and address (psychology)

>

> 1992 – 1999 doctor name and address (psychopharmacology)

>

> 1999 doctor name and address (breath and body work)

>

> 2003 – 2007 doctor name and address (Neurofeedback )

>

[Guest guest]

Hi Kathy, Just wanted you to know that I sent off a letter to my son's pediatrician along with the form for the NIH. Hopefully he will agree to treat and we can get everything down to the NIH. Say a pray. Thanks for all of your hard work. Regards, A Sample letter to NIH> > To: Soundsensitivity > > Date: Saturday, September 6, 2008, 1:41 PM> > Below is a sample of a letter that a member from this site> > gave to her> > doctor to put on his letterhead. She thought that it might> > be a help to> > anyone trying to apply. She was able to get hers sent off> > a couple of days> > ago, so the ball is rolling--lets keep it rolling!> > > > > > > > So far I have heard from only about 5 people who say they> > are going to> > apply. Come on--we need at least 50. This is an important> > opportunity. WE> > HAVE THEIR INTEREST and we don't want to lose it!! If> > we sent in 50> > applications, there is no way they could ignore this> > problem.> > > > > > > > Email me for all the info regarding what you need to do. > > My email is> > k.howe@.... I would be happy to help you in any> > way needed if you> > do it. I even live somewhat close to Bethesda if you need> > a quiet place to> > stay!! Please just do it--this is important!!> > > > > > > > Kathy Howe> > > > > > > > TO: NIH Undiagnosed Diseases Program> > > > 10 Center Drive – MSC 1951> > > > Building 10, Room 10C103> > > > Bethesda MD 20892-1851> > > > > > > > RE: patient name / Soft Sound Sensitivity> > > > Date: September 4, 2008> > > > To Whom It May Concern,> > > > My patient patient name presents with disturbing and> > unusual symptoms which> > do not lessen with prescription drug therapy nor> > psychological counseling.> > I find this case to be extremely unusual and do not find> > myself in a> > position to delve into the cause or the cure for this. I> > feel she would be> > an excellent and motivated candidate for any study which> > might result in an> > alleviation of her difficulty which impacts every part of> > life. It has> > affected her interpersonal relationships and her> > work/career.> > > > I am the primary care physician for patient name. I will> > provide ongoing> > consultation to the NIH team and will provide any> > appropriate follow-up care> > for this patient.> > > > patient name tells me she has been suffering with this> > condition since> > approximately age 8 when it suddenly became impossible to> > tolerate certain> > sounds. These sounds create a rage and panic sensation:> > classic “fight or> > flight” which feels barely controllable. Only by her> > removing herself from> > the stimulus or by acting out in a semi-violent manner> > stops the rapid> > heartbeat, adrenaline flushing and emotive feelings of rage> > and panic.> > Breathing sounds, mouth noises and footsteps are her main> > sources of> > turmoil, though children playing, voices in the distance,> > power equipment> > and a myriad of other sounds affect her the same way. The> > sounds which> > bring on the feelings do have one thing in common: they are> > sounds which are> > almost all background sounds: unnoticeable by most but> > patient name is> > unable to escape hearing them. The issues she has seem to> > be growing: she> > has developed more and more triggers over the years and> > continues to do so.> > She is no longer employed in her 25-year career of> > Financial Services> > Management as of 3 years ago.> > > > patient name currently takes Clonazepam (Klonopin) .5 mg> > 2X day and 20> > milligrams Fluoxetine (Prozac) 1X day. She has been on this> > regimen since> > September 1992 which was three years after giving up> > alcohol. This drug> > treatment has lessened the intensity of the feelings of> > uncontrollability -> > but has not affected the feelings of rage and panic. She> > is otherwise in> > excellent physical health. She presented to me after> > finding information> > on the internet: others suffer from this same condition. > > This appears to> > be a physical issue: not psychological.> > > > My office address is: > > ­­­­______________________________email is> > ________________________> > > > patient name address is:> > > > > > > > She has seen the following doctors/practitioners to try to> > find answers to> > her problem.> > > > Dates are approximate:> > > > 1988 - 1999 doctor name and address (psychology)> > > > 1992 – 1999 doctor name and address> > (psychopharmacology)> > > > 1999 doctor name and address (breath and body work)> > > > 2003 – 2007 doctor name and address (Neurofeedback )> > > >

[Guest guest]

gosh, I would love to show you the article about the Baltic Bash party

I threw over the Labor Day Weekend and share that with you since I just

mentioned how I might make a career change someday....because of 4S

but forget it, this site is getting very mmmm....you know....never mind.

To: Soundsensitivity From: tmpendleton@...Date: Tue, 16 Sep 2008 15:07:01 +0000Subject: Re: A Sample letter to NIH

I had to go to my doctor yesterday to get a steroid shot, for a problemI have with my shoulder. When I went in the room, there on the tablewas a NIH magazine. I am very much into trying to find a cure, but Idon't know why I feel so reluctant to ask my doctor for help with this.Anyway, I kept thinking I would bring it up, but he left the room beforeI could get up the courage. When I walked out of the room, he was onthe phone, so I went on up to the receptionist to pay. After I paid, hewas standing there, and I told him I had seen the magazine and wonderedif he would send them a recommendation about my condition. I told himthey had taken some interest in looking into this. He said sure, justto bring him in a letter describing everything about when it started andeverything, and he would go from there to write up the recommendation. I could not beleive it would be that easy, and to think how nervous Iwas about asking. I will get him the letter this week, and hopefully hewill get his sent in soon. See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

Pia,

I'm really a newbie here to this site, but I don't see why we can't share our lives with each other whether it is directly about 4S or just the positive things going on. I would love to hear about what you got going on..... maybe someday I will have something to share too. I like to think of this place as a safe haven to come and talk about anything. We have all been affected by this horrible syndrome whether we directly have it or have a family member with it.

I'm truly sorry that there was such an arguement regarding what people posted on here. Sad. I am saddened by these things.

Anyways, my eyes/mind are wide open and I'm interested in what you have to say....so if you don't feel comfy here...you can always directly email me!!!

OK...that can go for anyone really....well that is if you are reading this.

Enjoy the day!

Vicki

Re: A Sample letter to NIH

I had to go to my doctor yesterday to get a steroid shot, for a problemI have with my shoulder. When I went in the room, there on the tablewas a NIH magazine. I am very much into trying to find a cure, but Idon't know why I feel so reluctant to ask my doctor for help with this.Anyway, I kept thinking I would bring it up, but he left the room beforeI could get up the courage. When I walked out of the room, he was onthe phone, so I went on up to the receptionist to pay. After I paid, hewas standing there, and I told him I had seen the magazine and wonderedif he would send them a recommendation about my condition. I told himthey had taken some interest in looking into this. He said sure, justto bring him in a letter describing everything about when it started andeverything, and he would go from there to write up the recommendation. I could not beleive it would be that easy, and

to think how nervous Iwas about asking. I will get him the letter this week, and hopefully hewill get his sent in soon.

See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

Esileht Uudised Baltic Bash a Smash

Baltic Bash a Smash

Tuesday, 16 September 2008

Baltic Bash 2008. Foto: www.estonianhouselakewood.orgBaltic Bash drew 500 Balts together at the Lakewood Estonian House over the Labor Day weekend. According to Pia Levensteins and Karin Lichters, who spearheaded the event, the purpose of Baltic Bash was to afford Latvians, Lithuanians and Estonians, especially the younger generations, an opportunity to expand their acquaintances by meeting and mingling for a weekend of fun. As a last hurrah for the summer of 2008, Baltic Bash offered a variety of activities. Volleyball, table tennis, badminton, sumo wrestling in “fat suits,” face painting and hair beading were available with vendors selling ethnic clothes and jewelry. The formal portion of the weekend presented Estonian folk dance troup, Pillerkaar, from Washington, D.C. and soloist Kirsten Kuhi, accompanied on the piano by her brother, Mikal. Tarmo Tammaru strummed Estonian favorites on his guitar and sang with accompanist Heili Paluoja. Later a German band played waltzes, polkas, fox trots and tangos and at midnight the younger crowd moved to Lil’ Wayne’s “Make it Rain,” Lithuanian singer Basshunter’s “Dota” and other selections from DJ Markus Maasikas. Needless to say, the dance floor was full all evening.Appetite-soothing pork (thanks to the 200-lb.pig roast) and chicken dinners as well as delicious cakes and pirukad were available while beers of each Baltic country flowed smoothly into any empty mug. Drinking songs in various Baltic languages became prevalent as the night wore on and spirits loosened up. Oh, did I forget to mention the sauna, which was open for all?If anyone had not had a chance to view “The Singing Revolution,” two showings were available on Sunday. Others were busy with the all-day Baltic volleyball tournament, in which Taivo Ets’ team took first place. Their prize? A bottle of Lithuanian champagne! As each nationality’s crowds thin here on the east coast it is even more important that the descandants of the three jewels of the Baltic become acquainted and form bonds. After all, due to the geographical throw of the dice, Estonia, Latvia and Lithuania have been good neighbors through many tragic twists of fate. Many people are looking forward to Baltic Bash 2009!Virve Joks Lane

To: Soundsensitivity From: vnoe67@...Date: Tue, 16 Sep 2008 08:57:21 -0700Subject: Re: Re: A Sample letter to NIH

Pia,

I'm really a newbie here to this site, but I don't see why we can't share our lives with each other whether it is directly about 4S or just the positive things going on. I would love to hear about what you got going on..... maybe someday I will have something to share too. I like to think of this place as a safe haven to come and talk about anything. We have all been affected by this horrible syndrome whether we directly have it or have a family member with it.

I'm truly sorry that there was such an arguement regarding what people posted on here. Sad. I am saddened by these things.

Anyways, my eyes/mind are wide open and I'm interested in what you have to say....so if you don't feel comfy here...you can always directly email me!!!

OK...that can go for anyone really....well that is if you are reading this.

Enjoy the day!

Vicki

Re: A Sample letter to NIH

I had to go to my doctor yesterday to get a steroid shot, for a problemI have with my shoulder. When I went in the room, there on the tablewas a NIH magazine. I am very much into trying to find a cure, but Idon't know why I feel so reluctant to ask my doctor for help with this.Anyway, I kept thinking I would bring it up, but he left the room beforeI could get up the courage. When I walked out of the room, he was onthe phone, so I went on up to the receptionist to pay. After I paid, hewas standing there, and I told him I had seen the magazine and wonderedif he would send them a recommendation about my condition. I told himthey had taken some interest in looking into this. He said sure, justto bring him in a letter describing everything about when it started andeverything, and he would go from there to write up the recommendation. I could not beleive it would be that easy, and to think how nervous Iwas about asking. I will get him the letter this week, and hopefully hewill get his sent in soon.

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[Guest guest]

Pia

That sounds like it would have been loads of fun. Too bad I live wayyyyyy out in North Dakota or I could attend one of your functions...lol.

Vicki

Re: A Sample letter to NIH

I had to go to my doctor yesterday to get a steroid shot, for a problemI have with my shoulder. When I went in the room, there on the tablewas a NIH magazine.. I am very much into trying to find a cure, but Idon't know why I feel so reluctant to ask my doctor for help with this.Anyway, I kept thinking I would bring it up, but he left the room beforeI could get up the courage. When I walked out of the room, he was onthe phone, so I went on up to the receptionist to pay. After I paid, hewas standing there, and I told him I had seen the magazine and wonderedif he would send them a recommendation about my condition. I told himthey had taken some interest in looking into this. He said sure, justto bring him in a letter describing everything about when it started andeverything, and he would go from there to write up the recommendation. I could not beleive it would be that easy,

and to think how nervous Iwas about asking. I will get him the letter this week, and hopefully hewill get his sent in soon.

See how Windows connects the people, information, and fun that are part of your life. See Now

See how Windows Mobile brings your life together—at home, work, or on the go. See Now