Further Follow Up From Last Poll Re: Services Offered

[Poohbear]

I'm brainstorming here and wanted everyone (newbies and old timers alike) to give your input.

[gelann]

A doctor on site to answer questions.

[Guest tearose]

Really want literature to hand to a doctor / physical therapist....

really want a conference and to get a chance to meet people in real life!

[Poohbear]

Thanks everyone for your replies so far!!!

Gelann, thanks for your input! I too would LOVE to have a Dr on to answer questions but I know that will never happen. For one thing there are legal issues involved with that. Another big problem is there are only a handful of Dr's/researchers that would be able to really answer many of our questions and they don't have time to spare.

Tearose, I hear you!! I think the literature is a great idea and a doable one if we can get funding or raise enough $. The conference would be really nice as well. Personally, I doubt I could attend a conference unless it was local or no more than 250 miles away. I know a lot of us would not be able to travel but we can certainly think about it and look into it.

[ETOLY]

I like the idea of a conference as well! Although I think that instead of a national conference, regional conferences would be nice. Then it would be easier for people with dysautonomia to attend, doctors and researchers from a region could also attend to educate and be educated, and all interested parties could meet.

I also would like to see a call center where a person could talk to a live person and get direction. Doctor referrals, job accomodation referrals, equipment referrals, and anything that would help someone with dysautonomia have an easier life would be handled through this call center. Call center personnel as well as referrals would need to be checked out or educated to make sure that whoever will be giving assistance is knowledgeable in the overall needs of someone with dysautonomia.

Then I would like to see PSAs (public service announcements) to begin educating the world on dysautonomia issues.

Etoly

[worththewords]

If funding was there, I think a conference would be great.

[Sophia3]

Gosh, so much of what is suggested /dreamed about/wished for is VERY EXPENSIVE....I guess I am just grateful for a message board!!

a conference would be nice for those who can travel but cost LOTS and LOTS of money to put together.

I am not sure what is meant by a call center...whenever I call one of those, I get people in India that tell me to take a part out of my computer!>? Ha!

May I ask what is behind these questions of this poll?

Inquiring minds want to know. lol!!

I just remember when I got the CFIDS chronicle before there was the Internet and goint to GOOD support meetings run by a doctor. When the doctor wasn't there, the meetings weren't run very well and you came out feeling worse than when you went in!! LOL.

But I WOULD like to meet fellow dysautonomiacs but there are none close to me...as far as driving distance for myself.

Interesting poll, thought.

P.S. I would like Dysautonomia foundation that sends people to your house to help you get around....a chauffeur and cook. It would be major bonus if he looked like George Clooney...who also makes me laugh.

[Poohbear]

For where we are at this point I don't see how a conference would be feasible but it's something that in time might occur. It would require LOTS of money and I don't think most of our members would be able to afford it.

Sophia, the reason for the poll is that I have some ideas (but not enough energy to work on ALL of them) so I decided to try to get a feel for what our members greatest needs/desires are and then try to work toward seeing if there was some way I could come up with one area of focus. Most anything we do would require $ (a mix of us raising money and hopefully grant funding). But....to get to that point you have to have a clear vision, plan, estimates of cost etc etc. So....I am asking to try to come up with some ideas so I can further research, organize and propose something to Michelle and the members of this board that is "sound" and "doable"

Yep....I could use a George Clooney to drive and cook for me too I don't think there will be any grant money for that though!!

[Sophia3]

Poohbear said"

Yep....I could use a George Clooney to drive and cook for me too I don't think there will be any grant money for that though!!

Buzzkill......

We need a famous person with a BAD version of this illness and maybe George could make a movie about it.

Good questions Poohbear. Nice of you to do such a complex poll.....took some thinking....Good questions!

[Gena]

Hey, while we're dreaming here, if Clooney is going to make a movie about dysautonomia then I want to be the star!!

Seriously, though, regional conferences would be awesome, but huge effort and expense of course. I think they would be well worth it thoug.

I would like to see more detailed literature. I like the brochure Michele help put together, however I'd like to see one that focuses on dysautonomia in general, rather than POTS specifically. It seems doctors refer to this condition as many different terms, Orthostatic Intolerance, Mitral Valve Prolapse Syndrome, NMH, Dysautonomia, Autonomic Insufficiency, Autonomic Nerve Disfunction, etc. I know we all have overlapping symptoms and yet we have our own subsets of symptoms too.

POTS has a very specific, clinical definition, but I think there are other symptoms of dysautonomia that could be discussed further in a brochure without making it overly complicated.

A national PR campaign to send out PSAs about dysautnomia would be awesome too.

[Sophia3]

Poohbear

I just thought of something. I would like a brochure that tells how DISABLING this illness is for many of us..the brochure left some people wondering WHY we can't WORK PART TIME?????

So something to explain the ranges from ANNOYING to debilitating to doing downhill with this stuff after 16 years and LEAVING the house is NOT always an option.

To drive that point home would be helpful.

[Poohbear]

Thanks for the many wonderful ideas!!

Keep them comin'

[MomtoGiuliana]

The current brochure for doctors states that POTS can be as disabling as heart failure--but I understand, Sophia--the disabling aspect could be emphasized more to doctors, as well as in a brochure prepared for patients and families.

I would love a patient conference that included specialists/doctors as speakers. My POTS specialist and I keep talking about putting something like that together here on the eastern shore.

Katherine

[Sophia3]

MomtoG

I am FORTUNATE to have a doc that understands the disabling aspects but many folks are NOT.

Also, unless that point is made clear, many folks will be seen as lazy and malingers and not THINKING POSITIVE blah, blah, blah.

I remember the part about being limiting like CHF but that was made in passing. The disabling aspects expounded on would help do develope new rules to help with disability...even though it matters not the "name of the illness" but the LIMITATIONS..how often can we leave the house...need help with grocery shopping and or bringing groceries into house, etc.

Actually, Poohbear brought up many GREAT questions and they can not be easily answered by any foundation.

Poohbear, you do ask great questions and have good insight into chronic illness to ask such questions!

Your questions could fill up a book if we all had the energy to contribute...you know, with one of those book companies that print the books as folks order them! LOL

My therapist tried to get me to be interviewed or write an article for many women's magazines but her journalist connection said "my illness had too limited an audience?!" So I tried to do my little part but was disappointed the journalist never even CALLED TO SPEAK TO ME DIRECTLY.....as was my therapist.

[Poohbear]

For those of you who said you would like to see more advocacy/liason between Dr. and patients....

What are your ideas and thoughts about that? What types of things/services do you think would be helpful?

I'm asking because I have some ideas but this is a "wide open area" and I don't know if my ideas would fit with your needs. I want to make sure that any ideas/plan I come up with would meet those needs so please chime in.

I have lots of ideas for the education aspect as well, I just need to narrow it down some.

I'm sure many of these things will come in baby steps.

Thank you SO MUCH for all of your input!!!

[Roselover]

I markde Advocacy for patients because everytime I see a doctor I have to try to explain why a treatment is used for POTS/Dysautomia but how it use differently. This is hard and frustrating.

On the other hand, my second and equal choice would be medical materials because I have a hard time finding and understanding all the information out there and then squeezing it down into something I can give and explain to my doctore in a 20 min appointment!

Thanks for asking Pooh!

~Roselover

[joiedevivre516]

Hi! I think when I voted for that I was thinking of some kind of mailing list program for doctors, so that the doctors we see can stay informed about Dysautonomia without their patients just shoving it down their throats - I think that makes it seem a little less professional. I was also thinking of having some kind of medical presence along with DINET, and maybe that way, when doctors go to conferences and the like (you know, about new medical findings), there can be some sort of presence representing Dysautonomia so that physicians KNOW about it and will be better able to diagnose people and realize when what they're seeing is Dysaut.

I hope this helps, and thanks for doing this poll!

[ellen]

I get email notification on autonomic issues from "SPRINGERLINK", but often the articles are by subscription only. It would be good if we had access to these articles through Dinet as an organization (I don't want to pay for every article I read). I would be willing to pay a subscription fee. This way we could access the most current findings and recommend an article to the forum when we find something interesting. Thanks for asking!

[ellen]

I have the same response as Roselover. I have been SO frustrated with the ignorance of medical personnel, "patient advocacy" was my first choice, but I also feel the need for more educational materials. Both are important tools for managing this illness. Thanks again Pooh bear for your thoughtful questions!

[persephone]

I think a brochure that is more detailed would be good- we should have one like the one now where it's summarised, but also a more indepth option for medics etc.

[leah1321]

We could do an event, like a walk for Dysautonomia and Fibromyaligia or CFIDS or something. I am doing the Arthritis Walk on May 21 and I am psyched and people understand. i am handing out pamphlets all over related to it.

I heard about this site from people at NDRF and DYNA way back when the Dinet was just an information site and not a place for discussion. I talked to Michelle on NDRF (I was leah1321). I felt much more connected then because it was a smaller group and I met some people, including Michelle, at the NDRF conference in DC. I also know people from DYNA on this board. I have been talking with dysautonomia people since I was 18, seven years ago now. I do not see many of the people I met then on the board, but occasionally I do, like Sophia3. Anyway, this is a great site- continue the hard/great work!!!

I would like a Q&A section for patients going to new doctors. It is hard to know what to do when you get to one. I have these for my upcoming wedding and they have been invaluable. We could do for different specialties and different problems. Like rapid motilty or gastroparesis questions for GI docs. NCS symptoms or POTS or other ones for cardiologists and neurologists. Etc. People could mix and match important questions related to what they are experiencing. There could also just be a generic Q&A for the newbies going to their first specialists. It is important to seem smart, articulate and well-educated when going to doctors or they just don't take you as seriously. (not too educated about a particular disorder though of course --75% of drs hate that, I think-- just educated enough to know what questions to ask).

Leah

[goldicedance]

I am beginning to compile a "Medical Information Card" - actually a leaflet that gives pertinent information about my particular medical conditions, including diagnoses, medications, physicians, treatments, and so forth.

Would anyone be interested? Could see this being appended to the POTS brochure.

Lois

[Guest Julia59]

I would also like to see a more detailed brochure---although still summerized, but with information about all the forms of dysautonomia. On the front of the brochure I would like to see pictures of all the different types of people who get this serious disease.

There are many shapes and sizes---as well as different ethnic groups. The physicians need to see a little "shock & awe" to get their attention.

Just my 2 cents.............

Julie :0)

[Be Still]

A detailed brochure for doctors sounds good. I'd like to add that it contain information on the possibility of medication intolerance, so we don't get treated as medication-phobic people and get demeaned, bullied or treated like children who need to be convinced of the safe history of a particular drug. *sigh*

[Guest Julia59]

Be still----------you are right on about that. I find it ironic sometimes----if we went to the ER needing pain meds we would be accused of drug seeking----treated as an addict.

But if we tell them we want to avoid narcodic pain meds---were treated like idiots, a paranoid freaks---whatever-------it's madness. Maybe drug addicts should use a new angle, and say they don't tolerate pain meds well----then see what happens----reverse psychology------

Yes----that is definately something that needs to be added.

Julie :0)