Posted by Elaine (24.88.1.116) on March 18, 2000 at 22:08:59:
Carol Jones, Dennis O Connor, and Susan!
Below are their ideas. Please I need you three to send me your mailing address phone number and full names!
Since learning I have CH, educating others around me has become a new
> past-time. The wealth of knowlegde of those at CH.com has been awe
> inspiring, not to mention the support and new friendships. My first
attack,
> at least the first to catch my attention, hit on Christmas Eve, I spent 2
> full months rebounding through pain and mood swings that stressed my faith
> further than the loss of my Mother and Father. Family members think I'm
> crazy, or just looking for sympathy, and my children are never sure one
day
> to next who will be caring for whom. My life has been turned upside down
and
> I am forced to deal in terms of the next few hours instead of days, weeks
or
> months.
>
> This contest asked what projects should O.U.C.H. work on, I'm sure that
> you've heard them all, but I'll add my 2 cents worth. I did'nt know what
a
> clusterheadache was. I'd seen it mentioned on quizes for migraines, but
it
> had no real definition, and seemed to me to be less troublesome than the
> migraines I fought. Thus I'd see working for Education, Support and
Research
> of Clusterheadaches.
>
> Education is nothing if it does not encompass the whole of the spectrum.
> Education of the medical profession. Education of the pharmacutical
> companies. Education of the Insurance Industry. Education of sufferer's.
> Education of families and supporters of those afflicted. Education of the
> general public.
>
> Secondly, support. Having someone who knows and understands what an
attack
> of the Breast is like may be the strongest medicine we have for the time
> being. Knowing that we are not crazy and that the Breast can be battled
is
> sometimes the only light we have to focus upon. Sharing and Caring among
> ourselves is a strength I've clung to these last 3 months. This support
must
> exend to those that suffer quietly along side us. Spouses, signifcant
> others, and children who wait, watch and pray while we stumble through our
> prision of hell, never knowing when or how their lives will next be
> inconvienced or suspended. At the Conference, I'd like to see activties
for
> children of sufferes, to help them understand and allow them to voice
their
> concerns and fears with others in their shoes.
>
> Research is a never ending circle of the timeless riddle, "who came first,
> the chicken or the egg". Why do we get clusterheadaches? What is the
> chemical, biological, enviromental aspects of our lives that suddenly
alters
> and throws us into this pit of pain and anguish that destroys lives and
> families? Is there a cure? Is it possible to outlive the cycles? Is
there
> a medicine that will correct the bodies reaction to it's triggers, and to
> whom will it benefit and for what length of time? Are there foods, mental
> exercies, aromatherapy, that could help regulate if not elevate attacks?
>
> How can any of this be done? It must be done first by organizing those
who
> suffer and those who support them. Provide them with the tools and
knowledge
> of this condidtion to share with everyone they encounter. Knowledge is
> power, the greater the secret the more costly the damage. Sufferers' have
> nothing to be ashamed of. Thinking back on the Grant's Libraries, there
are
> numerous possibilities fo obtaining grants for research and education.
This
> affects men, women, and children all around the world. The national cost
to
> medical care and loss of work surely is greater than the loss to migraine
> sufferes. Publicity, airtime on a national show to give credance to our
> plight. These have been attempted, but with more time and greater
strides,
> there is no reason why Oprah could not recognize the plight of women and
> families in the day to day dealings of this unseen Beast. Get a scence
> written into a TV program such as E.R. or Chicago Hope. These are small
> feats that will alert many to the plight of CH suffers and the lack of
> medical awareness to the condition. Short stories of those absurd events
> that land a CH suffer in a Mental Institution, should be published in
> magazines and Readers Digest.
>
Carol Jones
As you may or may not have noticed "on the board", I have been wondering
about donating our brains to the Cluster Researchers. Goadsby said there
was a need for more pathologies.
Sooooo...my wierd but I think valuable suggestion for something that OUCH
could work on would be...
Provide all CHers with information on how to donate their bodies or brains
or hypothalamus or whatever the CH researchers want or need to further
their pathological studies.
Dennis O Connor
What about an advertisement for clusterheadaches.com on TV?
There are so many nationally broadcasted web sites that I see.
Would it be possible to add ours?
Just a thought.
Susan