I just took the ORCAS survey. When the question about where I would go for advice on caregiver stress I listed this site. For me it has really been the best. Welcome, zzzdeprived. You have found a very good site.
Welcome from me too, zzzdeprived. Please tell us more about yourself. Use the thread [Sticky] Welcome New Members You have really come to the right place, this site is a life-saver!
I said "internet" but didn't say this site - I'm afraid that if we ALL said that they'd think they'd stumbled into some sort of hornet's nest of people with all the same answers!
I thought the first survey from Jeff was for early AD, but when I spoke to him personally, he said "not really". So, I'm gonna keep on with those surveys. $50.00 a pop isn't bad at all. Maybe we'll get on a "list" of people willing to sell our stories and our opinions. Why not???
I spoke to Jeff today, and he said he has received 14 referrals from this site. You get paid $50 to take the survey, and I get a small referral fee for each person, so it's "win/win" for everyone.
Jeff contacted me by phone yesterday and said I qualified for the survey, while I thought I had not. He sent the survey which I took today. It only took about 45 minutes. I asked Jeff who was sponsoring the survey. He said he did not know, he worked for the survey company. The end of the survey posed questions which dealt with a possible new product X. This medication would stop the progression of AD. It explained different aspects of the product, possible side effects, etc. To me it sounded like the same medication my DH is taking in the BAP study. Interesting.
Jeff called me this morning but as my husband has FTD I didn't qualify. He was very nice and told me that everyone he has spoken to from this site has been awesome.
I just did the survey...Thank you, Joan!!!! It was very interesting and really made me think! When I spoke with the man that set it up, he said that they still need quite a few participants (his actual words were "a ton"), so if anyone hasn't responded yet or haven't told everyone you know about it, he said it will still be available for at least another 2-3 weeks. The link to the survey is:
Ha! Clarastired, you slipped in here on the QT. Welcome to you. Tell us a little about your situation, if you feel like it. Come back often for comfort, understanding, information.
Hi Clarastired, Love your name. I moved your comments to this already existing thread on the study. Someone e-mailed me about your post on the AA forum. Thank you for the kind words. Let me officially welcome you to my website:
You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 3 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great new section on informative videos. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
Whenever you feel comfortable, you can post information about yourself in the Welcome New Members thread at the top of this board.
I completed the survey today. It easily took 1 hour or more. The questions were very interesting. Since my husband is already enrolled in a drug trial I have answered similar questions through the research DR. The hypothetical drug treatment is very exciting. Hope my participation will help in some small way to fight this terrible disease. Regarding the age requirement speculations - my husband is 77 years old and I am 64. Somehow we met the criteria for the survey.
I completed the ap or whatever you want to call it last week, and a msg popped up on my screen: Thank you, we have enough participants. HB is 72 w/vascular dementia; I'm 69. As someone mentioned, I expect the questioning is being done by a third party for a pharm. company, which is a good way to get info that relates to particular med research.