Good Afternoon All!

I am fuming! Today was Steve's visit with our family doctor. I prayed so hard last night that he would tell us something definitive. He did not!

He did however offer to write a letter to the state to suspend Steve's driving privileges, and he put him back on Aricept!!!

He is now throwing him back over to a general neurologist! We had very poor results with the neurology dept. several years ago. Let me remind you that Steve will be 60 in July. He has been undergoing neuropsychological testing since the age of 52!

He has been fired from his job for yet another writeup for forgetting to do something. He has not yet been approved for unemployment, and we have no INS. He is a veteran of Viet Nam. They have been NO help so far!

I feel so lost! All because he is under age 65 I am ready to scream here! Why does everyone refuse to give him a diagnosis???


Very Frustrated, any ideas?

Thanks so much!
God Bless You ALL
xoxoxoxo's

Well, you're not getting a lot of ideas yet, are you ... Been worried about you, Sandie. So sorry you're still getting bounced around. I can't imagine how frustrating that must be.

I just visited the Alzheimer Research Forum, and noticed that they have information on early-onset (which made me think of you). They recommend: "Because Alzheimer disease is so strongly associated with advanced age, not all community-based physicians will spot the disease in a much younger person. Consider seeking a referral to a tertiary care center. Typically, this will be an academic medical center with a specialty memory clinic, or a federally funded AD research center. There, you are most likely to receive an up-to-date diagnosis and care. These centers offer opportunities to participate in research, if you wish to do so, and may have access to experimental procedures [for diagnosis] that are not yet broadly available."

To get to the home page, enter the URL: http://www.alzforum.org

In the menu bar on the left you'll see "Early-Onset Familial" highlighted in yellow. (They often call EOAD "eFAD" on this site, by the way.)

Click on "clinics" which is the last item under the "Early-Onset Familial" menu, or enter the URL http://www.alzforum.org/eFAD/resources/clinics.aspx

Enter United States as the country, don't enter a keyword, leave that blank. You'll get a list of 27 centers with EOAD expertise.

Maybe you can find a center reasonably near you (the closest I noticed was Chicago, but I scanned it pretty quickly), or near a place you and your husband would like to visit (to see family, friends, or just lovely southern CA which seems to have half the centers on the list!)

Even if you can't find anything nearby, the list has email addresses of key staff, phone numbers, etc., for all of the centers. Contact them, tell them your problem, ask for advice. Sometimes they're very busy and don't get back to you right away, so sometimes you just have to bug, pester, nag. Do it -- they're typically very nice, just easily distracted.

There are also 31 federally-funded AD Research Centers which have varying degrees of expertise on EOAD; the link to the ADEAR Research Center Directory is given (blue) in the introductory paragraph just above the list of specialty centers.

Good luck, let me know how you're doing (on the Caregiver Forum, please, or the Alzheimer Spouse site -- I don't come to this forum very often.)

Hugs

As long as you need to see MD after MD talk to the VA again, they really should be able to help you get a diagnosis. At this stage I would also go talk to someone in your congressional represatatives office, they may be able to help you and your husband apply for social security disability.

hey sandie...boy does my heart go out to you. does the fact that your husband is a vet exclude him from seeking disability as a general citizen? the main thing with this question is getting "today's date" on such an application and then fighting the system until you get it.when you DO get it you get paid back to the date on that application. also, since he is a vet, JAB's suggestion below on the web page to seek help from your local political sources is EXCELLENT. my partner is diabetic and now a double amputee both legs below the knee. i swear with all the dark humor known to me the that ssd was waiting to see if his legs were going to grow back. i enlisted the aid of our city counsilwoman-at-the-time and it worked miracles. also our local tv's stations have various kinds of help-lines. i called one of them and they added considerable fuel to the fire. both these sources made the difference. i truly know your ache and your sense of fighting this alone. as i am finding out in the past month of doing this chat room, i am not alone-i'm getting great ideas and great verbal hugs (it truly 'gets through'...thank you all). true faith starts at home: build it! then share it! and never give up. jbell