Do we have any doctors that are involved on this forum? What do the people we want to target suggest?

Families are on the outside looking in. I'd like to get an inside view of what the "target" audience thinks would work, and through what channels it should come from?

Any Neuros posting or lurking?



Edited 1 time(s). Last edit at 04/28/2010 02:07PM by Fred.

If I have an idea Eric, I'm not saying it's a priority.. GEEEEEESH MEN...

I never said, this is a priority... but why can't it be done among other things
not #1 or #2 but maybe #3

Also, I was answering the initial comment I thought. I don't know why this poor woman had to explain everything to every professional she saw that day and tried to come up with a way to maybe help out with the situation.. NOT come up with a cure or treatment, but to solve THAT problem. I still think it's a good idea. AND, I shouldn't think an idea has to only be presented by a "committee" I SURELY hope you aren't saying any organization only hears ideas from "committees" I mean look at the Windows 7... that was MY IDEA! LOL

I went to see a surgeon last year for a bad mammo (its fine, no problems-just precaution in the end-which took three months to determine!) and the new hot surgeon at my local office was going through my questionaire (sp?) and saw the family history.... her first question? "Isn't that a man's disease?" i did a Reagan on her... (Exorcist move!) I then took a deep breath and explained as i have for the past 23 years.... and she is younger than i! perhaps we should target the medical colleges instead of doctors?? She learned it from school, she said.... i almost asked her what text book?!?!?! Anyhow, i think we have to start at the source - where our doctors learn, and somehow demand that the text books are updated, or a suplement (?) is given about whatever has changed in the past...what...50 years? Hahaha! Have to laugh.... once my head came back to the front, i was very calm with her and left no marks...

What about that though? Target the teachers/text books/learning tools, to start? then pounce on the medical professionals!

Hugs to you all,

Suzanne

Mrspatwolf, I totally agree with you. I was an EMT, and we HAD to take Continuing Education Courses (CEU's). Some were 8hr classes others ranged down to learning how they transport patients on the helicopter. I've also worked at Doctor's offices and in surgery, so I know that the Docs and the Nurses are also required to have these information sessions. And if I knew where to get these pamphlets, you can sure bet that everyone that is or could be (locally) involved in my husband's medical needs, would have these pamphlets. I would also love to have a stash in my truck to give to all those who ask me what HD is.

But...I work, and am Stanley's sole caregiver (except for himself) so finding the time to create the written word and financing it would be next to impossible for me.

I am always conscious of what I say in front of Stanley, so I believe that might be why it aggravated me so much to have to describe the disease over and over, with him present.

I have been through similiar experiences as have most of you spending literally years explaining what is up with our loved ones. Care givers who are new to the disease just don't have the info necessary, nor do police, emts, etc.
I love the pamphlet idea and I think it would work well in many situations but in a crises who will refer to the pamphlet?
'Ideally' if a major movie were to be made about a real life family who has experienced true situations with real struggles, I'm talking blockbuster qualities and super stars it would get to more people. How do you make that happen?

Remember Lorenzo's Oil? In order to get it you have to see it.

I had a recent situation with a loved one who I took to a public event and had a distant relative accompany us.
Afterwards the relative said to me, "There is 'no way' to explain what it is like to go thru a day with a PHD unless you live it."
The ups and downs, complications involved and the need to always to anticpate and be on the lookout for possible trouble which might arise. Not just physical limitations but psychological, emotional limitations compiled on the physical. To take it on is monumental.
If stability in emotions can be regulated, our phds need to interact with others as much as possible. The humanity of situations can be at times very comical and yet so very sad. It is universal and we all know that in our lives "Reality is stranger than fiction." There is a real story here.
Maybe our phds look and act very strange at times and are reguarded as different to others but we know that they have the same desires feelings and wants as all.
It sounds like a pipe dream but it would work. We want and need others to understand and even help when possible.

or pull a "wag the dog" style snafu where an a list celebrity is diagnosed with hd and from time to time have public incidents splashed on the tabloids. It's so sick what it would take to really reach the general population.