Regular readers of this blog know that my mother suffers from Alzheimer’s Disease. That means our entire family suffers from the “long good-bye.” My dad, in particular, has been a saint of a caregiver, but he has watched the love of his life descend into the hell that strips them both of their quality of life.

You can imagine my excitement at seeing a headline about a reversal for Alzheimer’s disease!

As I read the story, I learned that an 81 year old gentleman with well-documented Alzheimer’s disease had been given a shot of Enbrel (a drug approved only for arthritis) directly into his neck, and within 10 minutes he regained a great deal of his cognitive capacity. Six months later, with additional shots, he has retained this improved memory. His family, as we can only imagine, was ecstatic.

But, of course, if it seems to good to be true, it probably is. So I got in touch with my Alzheimer’s point person, Dr. Sharon Brangman, a geriatrician and aging expert. I was able to interview her yesterday for my radio show. The interview will be aired this weekend.

Bottom line? It’s always wise to look behind headlines of studies — and this one is a good example. While Dr. Brangman does believe that there are seeds of good news here, there are a number of questions, too. Here are a few of them — enough to raise an eyebrow:

• This test was done on only one person. The injection has been attempted with others, and presumably they improved, too. But many, many more people would need to show similar improvement to suggest this is a step forward for Alzheimer’s patients in general.
• The journal which published the account of the experiment is the Journal of Neuroinflammation which is so small, Dr. Brangman had not heard of it. She questioned why something seemingly so huge was not published in a larger, better known professional journal, such as the New England Journal of Medicine.
• The chief researcher owns stock in the company that makes Enbrel, and is trying to patent the way the injection is administered.

Bottom line? The actual science behind the idea of reducing inflammation is bonafide — and it’s an exciting approach to attacking the inflammation of the brain, which may improve cognitive function in many others.

Is it worth being encouraged? Absolutely.

Is it something we’ll begin to see more information about? Most probably.

Is it a cure for Alzheimer’s? Probably not a cure, but perhaps a new approach to treating the symptoms of dementia and worth keeping an eye on.

Wise patients understand that medical news can yield all kinds of information, but reading behind the headlines provides much more information about their validity and whether or not they apply to our own medical problems or those of our loved ones.

	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	- - - - - - - - - - -
	Join Trisha in the Patient Empowerment Forum at About.com
	- - - - - - - - - - -
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Regular readers of this blog know that my mother suffers from Alzheimer’s Disease. That means our entire family suffers from the “long good-bye.” My dad, in particular, has been a saint of a caregiver, but he has watched the love of his life descend into the hell that strips them both of their quality of life.

You can imagine my excitement at seeing a headline about a reversal for Alzheimer’s disease!

As I read the story, I learned that an 81 year old gentleman with well-documented Alzheimer’s disease had been given a shot of Enbrel (a drug approved only for arthritis) directly into his neck, and within 10 minutes he regained a great deal of his cognitive capacity. Six months later, with additional shots, he has retained this improved memory. His family, as we can only imagine, was ecstatic.

But, of course, if it seems to good to be true, it probably is. So I got in touch with my Alzheimer’s point person, Dr. Sharon Brangman, a geriatrician and aging expert. I was able to interview her yesterday for my radio show. The interview will be aired this weekend.

Bottom line? It’s always wise to look behind headlines of studies — and this one is a good example. While Dr. Brangman does believe that there are seeds of good news here, there are a number of questions, too. Here are a few of them — enough to raise an eyebrow:

• This test was done on only one person. The injection has been attempted with others, and presumably they improved, too. But many, many more people would need to show similar improvement to suggest this is a step forward for Alzheimer’s patients in general.
• The journal which published the account of the experiment is the Journal of Neuroinflammation which is so small, Dr. Brangman had not heard of it. She questioned why something seemingly so huge was not published in a larger, better known professional journal, such as the New England Journal of Medicine.
• The chief researcher owns stock in the company that makes Enbrel, and is trying to patent the way the injection is administered.

Bottom line? The actual science behind the idea of reducing inflammation is bonafide — and it’s an exciting approach to attacking the inflammation of the brain, which may improve cognitive function in many others.

Is it worth being encouraged? Absolutely.

Is it something we’ll begin to see more information about? Most probably.

Is it a cure for Alzheimer’s? Probably not a cure, but perhaps a new approach to treating the symptoms of dementia and worth keeping an eye on.

Wise patients understand that medical news can yield all kinds of information, but reading behind the headlines provides much more information about their validity and whether or not they apply to our own medical problems or those of our loved ones.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate email tips
	………………………………………………………………..
	Join Trisha in the Patient Empowerment Forum at About.com
	………………………………………………………………..
	Or link here to empower yourself at EveryPatientsAdvocate.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Those of you who read this blog know my mother has Alzheimer’s Disease. We began to notice problems almost 10 years ago, and my father, sisters and I have suffered along side her.

Last February, I watched an episode of Grey’s Anatomy, when Ellis Grey, the mother of the main character, “woke up” from her Alzheimer’s Disease for a day. The episode was disconcerting, but hopeful, but frustrating, and raised the question of whether that was really possible.

At the time I could find no references online that spoke to this possibility. I blogged about it. Read the post here.

A few days ago, I heard from Loretta, whose mother had the same experience as Ellis Grey did. Her mother was lucid for hours and hours, talked to all their family members, couldn’t believe she had been “out” for years, got all caught up on family happenings…. The family all witnessed the phenomenon — and they video taped it.

I was flabbergasted by Loretta’s email! I believe every word of it. And Loretta and I have exchanged several more emails since then. She even gave me permission to share it with all of you.

And of course, dozens of questions popped into my head…. One of the biggest was — does this happen more frequently than we realize? Are there others who have had this experience, but when they ask the professionals about it, they are dismissed?

And more importantly — can we learn anything about this disease from those who do “wake up” even if it’s just for a short period of time? Does anyone track it? Have others video taped it?

Loretta tells me that the caregivers at her mother’s assisted living center have witnessed it before with other patients. To those who care for Alzheimer’s patients, this doesn’t seem at all unusual.

But why are there no studies? Why isn’t it part of the literature?

Yes — I do know many of the questions we loved ones must face. If I could have my mother back for just a day, knowing she would later retreat to her Alzheimer’s fog, would I want her to be lucid again? Would it be heartbreaking? Or joyful? What would we talk about? Would she be sad or angry? At the end, would we be sad or angry — or simply thrilled that we enjoyed some “bonus” time with her that had been unexpected?

But all of those questions, in my opinion, pale in comparison to what we could learn — for future sufferers. Does this only occur a few years into the disease? Can we figure out what triggers the awakening? Can we draw conclusions about the biology of it? Does it give us some clues as to where the memories have gone, if they have gone anywhere? And of course, dozens more.

What if we began comparing notes? What if we started tracking the phenomenon?

There are so many possibilities for learning about the disease if we can just corral the experiences!

So I have built a page on this blog where those of you readers who have had experiences, or have questions, can begin to share your thoughts. If it outgrows this blog, then perhaps I’ll start another one.

Link to the Alzheimer’s Reports page here — which also includes Loretta’s email to me.

If you know of other resources about this particular phenomenon, please let me know. (Not just Alzheimer’s resources in general — it’s a huge topic, with excellent resources, and one more won’t contribute to the discussion.) You’ll find contact information at Alzheimer’s Reports.

Talk about patient advocacy!! The strength and purpose of individuals who care — let’s see what we can do!

	………………
	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate once-a-week or so email tipsOr link here to empower yourself at EveryPatientsAdvocate.com
	………………

Those of you who read this blog know my mother has Alzheimer’s Disease. We began to notice problems almost 10 years ago, and my father, sisters and I have suffered along side her.

Last February, I watched an episode of Grey’s Anatomy, when Ellis Grey, the mother of the main character, “woke up” from her Alzheimer’s Disease for a day. The episode was disconcerting, but hopeful, but frustrating, and raised the question of whether that was really possible.

At the time I could find no references online that spoke to this possibility. I blogged about it. Read the post here.

A few days ago, I heard from Loretta, whose mother had the same experience as Ellis Grey did. Her mother was lucid for hours and hours, talked to all their family members, couldn’t believe she had been “out” for years, got all caught up on family happenings…. The family all witnessed the phenomenon — and they video taped it.

I was flabbergasted by Loretta’s email! I believe every word of it. And Loretta and I have exchanged several more emails since then. She even gave me permission to share it with all of you.

And of course, dozens of questions popped into my head…. One of the biggest was — does this happen more frequently than we realize? Are there others who have had this experience, but when they ask the professionals about it, they are dismissed?

And more importantly — can we learn anything about this disease from those who do “wake up” even if it’s just for a short period of time? Does anyone track it? Have others video taped it?

Loretta tells me that the caregivers at her mother’s assisted living center have witnessed it before with other patients. To those who care for Alzheimer’s patients, this doesn’t seem at all unusual.

But why are there no studies? Why isn’t it part of the literature?

Yes — I do know many of the questions we loved ones must face. If I could have my mother back for just a day, knowing she would later retreat to her Alzheimer’s fog, would I want her to be lucid again? Would it be heartbreaking? Or joyful? What would we talk about? Would she be sad or angry? At the end, would we be sad or angry — or simply thrilled that we enjoyed some “bonus” time with her that had been unexpected?

But all of those questions, in my opinion, pale in comparison to what we could learn — for future sufferers. Does this only occur a few years into the disease? Can we figure out what triggers the awakening? Can we draw conclusions about the biology of it? Does it give us some clues as to where the memories have gone, if they have gone anywhere? And of course, dozens more.

What if we began comparing notes? What if we started tracking the phenomenon?

There are so many possibilities for learning about the disease if we can just corral the experiences!

So I have built a page on this blog where those of you readers who have had experiences, or have questions, can begin to share your thoughts. If it outgrows this blog, then perhaps I’ll start another one.

Link to the Alzheimer’s Reports page here — which also includes Loretta’s email to me.

If you know of other resources about this particular phenomenon, please let me know. (Not just Alzheimer’s resources in general — it’s a huge topic, with excellent resources, and one more won’t contribute to the discussion.) You’ll find contact information at Alzheimer’s Reports.

Talk about patient advocacy!! The strength and purpose of individuals who care — let’s see what we can do!

	………………
	Want more tools and commentary for sharp patients? Sign up for Every Patient’s Advocate once-a-week or so email tipsOr link here to empower yourself at EveryPatientsAdvocate.com
	………………