thanks...I think he was the producer who did a play on his aneurysm??? Now, remember Laura's name; and, cannot jog Teri Garr in memory...
Colleen, what words did you use in search to secure the names?
Mitch,
I have a family of friends (siblings) w/PKD...two of them are in a research study... One has a small aorta aneurysm (do not know details); another has had a kidney removed and on dialysys; the brother died some years back. Have you found the PKD site and contact info?
Yes Pat we do have a support group here in Chicago.It is held every last Tuesday of the month at 6:P.M. Is’s held at the University Of Illinois Neroligy Clinic.Our sponcer name is Janet Sutherland who is a survivor.She is really good,I learn so much from her.On last year she did a fundraiser called Survivors Of The City,I think we did pretty well but can stand to do better if we can find someone famous who is willing to talk about it and bring it to the forefront.Joe Biden seem to be afraid to talk about it maybe because he think people will think he is crazy since this is something to do with the brain.But I think people have to understand this thing is killing people of all ages,so we need to get it out in the open as soon as possible so more people can be aware.I’m in the process now of trying to reach out to Sharon Stone,I don’t know what’s going to come of it but I’m going to give it my best shot.Will be in touch and God Bless.
No but haven’t really looked into it. Has your family with PKD all been screened? I’m passing the word to my family. It’s another thing entirely to get the tests actually done (insurance, co-pays and all). If you have the site handy that would be great. I was very lucky being the only one of us who avoided PKD so I could donate. Thanks for your time!
Avis,
Heidi has the Aneurysm Awareness Week line... then there are:
this BAF site; the support group leaders which may be great for asking/sharing ideas on promoting...along w/all BAF lists now...
TAAF (the Aneurysm and AVM Foundation) site in CA... ■■■■■■■■■■■■■■■■■■■■■■■■■■■
Aneurysm Outreach, Inc (OIA) In Prairieville, LA; Sheila Armstrong, president ■■■■■■■■■■■■■
American Stroke Association; div of heart Association www.strokeassociation.org
National Stroke Association, in CO www.stroke.org
Stroke Clubs International, Galveston, TX strokeclubs@earthlink/net How close to Michelle?
Brain Injury Association - BIA (out in search) they do have various local groups
The Goddess Fund www.thegoddessfund.org ... the Hazel K Goddess Fund for Stroke Research in Women...geared initially at ischemic stroke...established by her daughter several years ago...
National Institute of Neurological Disorders www.ninds.nih.gov which I think lists or refers to the clincial studies in progress...and, also describes various neuro diseases...
Center for Patient Partnerships, Madison, WI; www.law.wisc.edu/patientadvocacy/resources/resources.html
No idea if connections of local groups/meetings/promotions/referrals...have no memory as to why I
have this site because I am not near Wisconsin...must have had something of interest to me...
Jill Bolte Taylor, PhD...I did not write down her website...put her name in search... in her book, she lists/notes a lot of other resources and magazine articles...Discover and Oprah
My thought (tho limited) is that any of these associations/organizations may have local groups and their sites may jog ideas on how to promote...
Yes, I can find/ read /appreciate sites...and, not manage/promote my own next step...
Mitch, my apologies...not my family...friends who are all siblings...not familially relatd to me.
They have gone thru a lot; lost their dad from PKD; have one half brother who does not have it!
You may find of interest...my first friend, a size 7, 27 y/o told me she had high BP...I told her then she needed to be re-tested or have a new BP test or more testing... It was some time after that the PKD was found starting w/their dad... I think it was just really really knew for any/much data/info than BAs have now.
I will check w/Cheryl for connection data and get it to you...may be a few days...I do not know what is on her schedule now...
Avis...I emailed her manager/director (right term?) and could not get a response...when she was on the Oprah show some years back, they talked little of aneurysm...other than Sharon had had one...
Wishing you the best of luck in that...and, I hope you may try contacting Oprah direct...perhaps she could /would be the one to encourage the stars / renowned individuals... to participate / be a leader in promotions... the other I think about is the family of the women congressionl leader who did not survive ...my apologies again in not remembering her name ...that was likely 2-3 years ago? And, we have to get the symptoms out...the symptoms we are told are NOT symptoms / related... when our lobes, ventricles/CSF, cranial nerves, pituitary, brain stem and more connect, control, manage all the pieces/parts of our brain (some overlap/interconnect / communciate) and all of our body... Again, my non-degreed, non-licensed, but experience-related, opinion... are far sooner than "the worst headache of my life" ...sorta reminds me of a tire blow-out versus the initial tiny bulging... we expect our mechanics / tire specialists to see / fix / replace before the blowout...
Blessings to you, too...to all of the members here...
I did contact the Oprah show,and I’m trying to get her to consider doing a show on brain aneurysms,I don’t know if I’ll be successful but I’m giving it my best shot. Will be in touch,God Bless.
Thanks for all the info.I will defitnitly look into all of it.
I have 7 addresses for her,I plan on sending the letter to each address hopefully one will get to her.Will be in touch,God Bless.
Avis...you are doing great...
The other that comes to mind is the family of the woman congressional rep from Ohio who did not survive...based on distance, I know nothing of her other than the news of her loss 2 to 3 years ago... (my memory lapses on names, etc)
Blessings to you... to achieve your goals...
Pat
(My Opinion) I don’t feel that people don’t tallk about it because there is no cure there is a lot of things out here and there is no cure for but it is put out in the open.I think people are afraid to speak abput Brain Aneurysm because of the word (Brain)I think that word scare people.Look At Joe Bienden he probally feel he couldn’t get into the White House if he talked about it because people would think he was crazy because something is wrong with his brain.That’s why I feel we need to educate people on a aneurysm so people can stop being afraid.I think if we could educated people then when their symptons start they’ll know what to do, and not panic and get to the doctor and hopefully in time to save their lives.
Hi Avis,
Making more people aware about aneurysms is part of the mission of The Brain Aneurysm Foundation. You are right, there is so much awareness about breast cancer. Many of the celebrities who have been affected by brain aneurysms, as well as many regular individuals, do not want to discuss their aneurysms, perhaps afraid of the stigma associated with possible brain injury suffered during an aneurysm. There is discrimination in the workplace in many cases against people with aneurysms, so some people don't want to talk about it too much, because they are afraid they may lose their jobs.
Bret Michaels had a brain bleed, but it was not due to an aneurysm. Sharon Stone admits to having a stroke, but we are not sure she had an aneurysm. Joe Biden survived two aneurysms and maybe when he is out of office, he may be more interested in being involved with aneurysm awareness. Mario Batali had an aneurysm, but he doesn't mention it any where on his bio. Neil Young had an aneurysm.
hey pat and avis i live in the dallas area…gonna try and get something going in my area also…wish me luck!
Ginny,
Thanks for your input... we need more awareness to the public... to better pursue quicker/adequate testing/diagnosis from symptoms...which may give people a greater ability to return to work...safely...
There are various aspects to companies... I do not believe there is (much) discrimination...
Companies have commitments...to employees, whether union/other agreements from safety to salary/benefits; the second to assure the jobs are done, products made, delivered, customer/client commitments are met...and, profits are in, so they can all stay employed...
There is a safety factor w/loss of balance, vision/hearing defects (likely not tested b4 d/c)...and, the fatigue that is sooo overlooked... We tend to see an office, not the work environments for many, climbing up/down, underground, driving (corporate vehicles) to various appointments, deliveries, etc..
As for understanding how we are observed...we need to know what to explain... we need to be told which artery(ies), lobes/ventricles, cranial nerves, have been affected and the status/prognosis... and more... Thus, how can we explain it to employers/others?
Easy to get a status note from the vet on a pet...and, not on humans...
Avis....
I completely agree w/u..and, that brings us, the survivors, spouses/family to open to the status/prognosis, changes, adjustments... because there is affect/effect on brainability...
Somehow, my personal opinion...is that treatment and explanation to VP Biden would have been so advanced compared to what has been given to us...especially women... YES, I am critical...
Avis, what data was given to you by your neuros/mds? Were you able to comprehend it and explain it to others? I certainly was not...I was fortunate in finding the bathroom...let alone able to explain that I had... others may think that is really shitty...
In other words, if med management does not tell us...how will we tell the public... to promote information on brain aneurysms? YES...I can be critically sarcastic...
Please accept my apologies for my crudities...then, accept my hugs to you for your commitment to open the door on brain aneurysms...the causes/reasons, symptoms for diagnosis, and potentials of recovery...
Based on my experiences...I panic thinking of getting doctored practice...again
I will, reasonably, do everything I can to assist you...
There is a good internet site under Linda M. Fox, homepages.luc.edu/lfox/ which has a list of people that have survived annies and have not, some others; Lucille Ball, James Garner, Conway Twitty, and Teri Garr.
We are observed from the outside-so no one can view the inside. Even Workers' Comp cannot understand this-so how can the workplace?
Lisa,
Interesting that you mentioned worker's comp...my intiial emergency, L&I was invovled, and it likely was interesting but I did not have the sensibility to pursue some issues...
Pat
Avis, so hope you can give us an update... you are doing so much to make contacts...
Pat
This is my update,I’ve contacted several organizations,I’m now waiting for some feedback from somebody.I’m sure I’ll hear from somebody soon. Well anyway here are some of the people I’ve contacted,The Oprah Windfrey show ( I don’t really expect to here back from her but I’m hoping and praying,I’m going to stay positive)Anyway I also contacted Nancy G.Brinker,she is the sister of Susan Kormen the one who died from breast cancer.I also sent out 7 letters to Sharon Stone,hopefully she’ll get one of them and read it.I plan on sending a letter to the White House,but I haven’t gotten arojund to that one yet.Right now I’m in the process of getting ready for a trip to San Antonio,Tx.I have a niece there who is dieing from breast cancer.The doctors have given her 2 weeks but I say whatever God’s will is let it be done.I won’t be doing anything for a while but I do plan on getting back into the swing of things upon my return.Please pray for us to have a safe trip there and back.Will be in touch soon,God Bless each and everyone who reads this and who don’t.