ElderCare Online The ElderCare Forum The ElderCare Forum Early Onset Alzheimer's Disease Carer to my wife Angela eoad at 48
The ElderCare Forum The ElderCare Forum Early Onset Alzheimer's Disease Carer to my wife Angela eoad at 48|
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| <May>
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Snow lynne, thank you for the update on medicare.I am unable to use it as my husband has the golden plan under Aetna and his entire coverage is with them , except for hospice.I do hope those who are needing to find answers will have this test done.It is the one recommended when they had the AD convention in Phila.
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Senior Member |
Welcome,Steve.I have Alzheimer's.I am a member of a group who all have different types of dementia.We chat every night at 8 pm central time.The website is:
http:www.alzinfo.org/community/chatrooms/ We welcome all caregivers to come chat with us,as we have many who do.Look forward to seeing you there. Lynne |
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Senior Member |
Medicare now pays for diagnosing Alzheimer's.
Lynne |
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| <May>
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Those of you who were able to have a pet scan are fortunate.I wanted one for my husband and my mother and both were denied by the insurance co.
I was talking to a lady who is studying to be a doctor.She was told to never suggest a pet scan as they are expensive and the insurance co. most of the time , refuse.Again we have a system who refuses to give our loved ones the one test that could give answers we need.Shame on them |
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Member |
Hi Billy,
My husband was diagnosed with AD in February evn though we have been actively pursuing a diagnosis with other PCP's and neurologist. Today they can confirm that it is AD with a PET scan. I don't think they were doing that 6 years ago and then AD was a clinical diagnosis until death when they did an autopsy. I would insist that your wife be given a PET scan (which our insurance paid for) so that you can have a firm diagnosis. What they do is compare the activity (or lack thereof) with persons with AD. Giunella
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Experienced Member |
Steve,
Have you looked at the website for the Alzheimer's Society (the UK equivalent of the US' Alzheimer's Association)? The website is www.alzheimers.org.uk. Right at the top of the home page is a link titled "younger people with dementia..." When you click on that, you get to more links to programs and services (including support groups) all over the UK. I'm not sure how helpful they'll be, but we here in the US have recently been reading that the Alzheimer's Society of the UK is starting a EOAD awareness campaign so they seem to be ahead of our US Alzheimer's Association. Here in the US, there are a few of us (both inside and outside of the Association) who are working to increase awareness of EOAD and get a better idea of just how widespread it is. FYI - the numbers usually used for how many people have Alzheimer's in the US DO NOT include people under age 65 (we just learned this at the Association's Public Policy Forum earlier in May). You might also look into DASNI (Dementia Advocacy and Support Network International) - www.dasninternational.org. It's for people of all ages with dementia (and their care partners) but many of the most active members are younger folks with Alzheimer's. And, finally, even though you're in the UK, you can access the websites of the US Alzheimer's Association (www.alz.org) and our US network of caregiver's resource centers at www.caregiver.org. They both have a lot of info that might be helpful to you. Hope this helps! |
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Senior Member |
Hi Steve,
I too have a wife with EOAD. As best we can determine she probably started experiencing the early dementia at about the age of 46 or 47. She is now 55 and has very little functionallity of her own. My wife Ronni was diagnosed about 6 years ago and we went through many different tests and doctors until we got the final diagnoses. There is no reason in her life to give answers as to why she has this disease. No trauma, no family history and no other physical or chemical connections, it just happened. The doctors feel it is probably AD but of course that can't be confirmed without an autopsy. As you might guess at this writing my wife isn't dead yet so the autopsy isn't an alternative at this time. Unlike Don's wife, my wife is having a very difficult time accepting what is going on with her. She doesn't want to hear about it and will get very upset when anyone mentions Alzheimer's to her. She will accept that she has Dementia but does not want to hear AD. To her that is the end of the road. That means an old person in a nursing home and she isn't ready to accept being related to old nor to the thought of having to go die in a nursing home. I am available at anytime to try and answer any questions you might have. I am sure Don would say the same thing. If you are like me you probably don't know what questions to ask yet because you aren't really sure where your wife is in the process of the disease. I can say that there are times when it appears nothing is happening and then there are times when you can really see a major change. Anyway, whenever you feel the need to let it off or out, we're here. Billy G |
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Experienced Member |
Hi Steve, My name is Don. It has been about 3 years since my wife was diagnosed with dementia. We just found out that it was most likely caused by Lupus but whatever the cause it is slowly taking my Suzanne from me. I have decided that I am in for the long haul and try to enjoy each day I am with her. I have been blessed by good doctors and medicine which is keeping her stable. Suzanne has a very good attitude and has been very accepting. The road has not always been easy but this forum is great for asking questions or just letting off steam. One thing you will discover that there are many people out there caring for a spouse with eoad or other forms of dementia. You are not alone. Welcome, Don
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