The concept of cure versus management

[Guest guest]

Please be careful about using the word cure...it has such a strong impact on

such a hopefull community here, wishing for a cure for a very difficult

condition....

Cure implicitly means, all done, All gone, all finished, all removed, all

better. 100 %.

Management of a disease or condition or symptom is probably more common and also

can be very helpful. If I have glaucoma, I can put a simple eyedrop in each eye

and the symptoms disappear, for the most part.

That is excellent medical management.

We can manage many medical illnesses and ailments. To the point where we hardly

notice anything.

It is not a bad goal to aim at medical management while hoping and proceeding to

seek a cure. Cures can happen, too. I am thinking about how for example, the

use of vaccines has changed life since I was born. Polio struck down many

children in the past, now it really does not seem to exist.

This group was started by myself, an audiologist, as the people with misophonia

were directed into the ear physician's offices for examination due to the most

common complaint of auditory trigger reactions in many children and young

people, and then were directed into the rehabilitative world of the audiology

specialist, those of us who have focused on other Decreased Sound Tolerance

(DST) conditions such as hyperacusis and phonophobia.

Using sound as therapy for these conditions, DST ones, I mean, dates back to the

1970s. There are reams of research about using sound as therapy in the

literature and since the 1990s, about using sound as therapy for hyperacusis

thru the work of Dr. Pawel Jastreboff and Audiologist Gold.

There are a few professionals in this country who have dedicated their time and

energy to become focused specialists in hyperacusis, and it is these people who

gathered slowly to form up the Misophonia Provider network.

in addition to the primary management program using sound/CBT, we are seeing

here, people who are trying other approaches and reporting initial results.

I think that is great.

I do not agree that we can call anything a cure right now. But the hope is

there and will be there and people want very much to find a cure, that is for

sure!

I myself would prefer to maintain a support group for admitted members to

gather, compare, support, educate, share, question, and report etc etc without

the onus of having it open to those who do not have misophonia/4S.

Others might prefer something else. That is ok with me, we are all free to act

as we wish or decide.

BUT please follow the rulse of netiquette on the internet and private member

support groups:

1) please do not violate privacy by sharing personal emails with others outside

this group, or abusing private email options such as bothering posters here with

unwanted private mail or negative content

2) if someone asks you to stop emailing them on their private email address,

please respect that wish, and stop. if they complain, then then moderation

begins.....we have 2 moderators here and we will have to have a meeting and

decide what to do

3) please don't use the private emails here to spread negativity, rumors, mean

thoughts, etc. to others who come here for support and help....this is just bad

manners anywhere in the world...

We are all part of this site. If you are finding it helpful, good, if you want

something different, that is ok, too, just go do it. I think we have something

valuable here and the newbies need much help and support. And there are plenty

of newbies, every day.

We can use medical management strategies wisely and search for a cure and

promote the Misophonia Association and move forward with our mutual goals and

dreams....it has been quite a journey so far, and we have a long ways to go.

Dr J