But I also rejoice!  Because more than a decade of Alzheimer’s disease had ravaged her brain, and her body, and she was not Mom for many, too many years.  She is now free of that prison.

I wish you could have known my mother.  Intelligent and funny, caring, talented and clever, she brightened a room when she walked through its door.  She had a beautiful singing voice which graced school auditoriums and church sanctuaries, and a mean golf swing which found its way through more than two dozen countries across the globe, and resulted in three holes-in-one!  She loved the Buffalo Bills, the Buffalo Sabres, and Syracuse University sports.  She was a master calligrapher and could cross-stitch her way to the moon and back.

All that and more.

The “more” came in the form of being a loving and supportive partner to my dad and, from my own perspective, a great mom and grandmother, too.  The life lessons she shared were the basics — cooking, cleaning, etc.  But more than that, my sisters and I learned concepts that have stood the test of time and have made us better people.

So my tribute — this post — will be about sharing two of those life lessons with you, so you can understand better what I mean.

Mom was a fantastic and creative seamstress.  Each Halloween she would put together the most glorious costumes for my sisters and me — and sometimes for herself and Dad, too.  When Mom was pregnant, she made herself a kangaroo costume. In second grade, I was a Christmas tree.  A couple years later, I was the organ grinder and my younger sister, Barb, was the monkey.  Seriously.

Fast forward 25 years, I would do my best to sew fabulous costumes for my daughter, Becca, too, beginning when she was only a year old.  But when Becca was in second grade, all she wanted was a $5 costume from Kmart!  All I could think was, what kind of a lousy mother would just spring the $5 for a cookie cutter costume from Kmart?  It was a conundrum, for sure.

So I shared that conundrum with Mom, in hopes she would understand the dilemma.  But she didn’t understand it at all — because to her way of thinking, the point was to make Becca happy.  And if Becca was happy with a Kmart costume, then so be it.

In other words — the outcome was far more important than the process.  A good lesson.

Many years later, and up until about 2001, Mom and I played golf in the mother-daughter golf tournament each summer. This particular golf tournament was an annual event which was won by the same 2-3 mother daughter pairs each year — because they were all good, competitive golfers.

I’m not that golfer.  I play against my own previous scores, but don’t really care about beating someone else.  I’m more about the fun, the fellowship, and enjoying a beautiful day.

However, undaunted, Mom and I would play our best.  If you won the tournament, there were some very nice prizes to be had.  And, if you won the tournament, you were put in charge of the tournament the following year.

So each year, before we teed off on the first hole, Mom would remind me that our goal was to come in… second.

The lesson?  That sometimes you win bigger by not being first.

It’s not easy losing a parent.  I’ve been learning that for many years through the fog of Alzheimer’s, and I’m learning even more about it now.  We’re fortunate that Dad is still with us – as sharp and vital as ever.

We’re at peace with losing Mom, even through our mourning.  Over time, I’m sure that the sadness and frustrations wreaked by Alzheimer’s will be fully replaced and obscured by the happier memories of her first 75 years.

I hope you and those you love will never have to suffer “the long good-bye” of Alzheimer’s Disease.

Rest in peace Mom.  I will always love you.

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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.

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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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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!

	………………
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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!

	………………
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	………………

My mother is the second person in our family to have contracted Alzheimer’s disease. Her mother, my grandmother, had it, too — although we didn’t call it such in those days. Gramma had “hardening of the arteries.” Same thing, different generation. Did previous ancestors have it too? We don’t know.

That explains to you, though, why my sisters and I are highly attentive to any news that comes down the pike regarding Alzheimer’s disease. There must be genetic tendencies. We figure there’s a good chance we’re next in line. You can imagine how we peruse the headlines — we’re looking for any and every helpful tidbit, or any hopeful research results. No silver bullets have come along. But we do get promising news on occasion.

Unlike my sisters, I also pay very close attention to any of the news regarding hormone replacement therapy (HRT), and how it relates to anything at all. In 1993, I had a total hysterectomy and immediately began taking estrogen-only HRT. In these 15 years, if one was to create a chart of the good news, bad news about HRT, it would look like shark’s teeth — up and down, pointed lines – to HRT or not to HRT? And if I had only ever read the headlines — worse yet — if I had actually believed the headlines by themselves were always accurate, then I would have been on and off that HRT a dozen times in the interim.

And that brings us to the reason for today’s blog post — an article in Time Magazine called “Study: Estrogen May Fight Dementia.” Reading the headline, my heart skipped a beat! I take estrogen! Maybe it has turned out to be my silver bullet! Maybe I won’t get Alzheimers!

But therein lies the problem. It’s so easy to quickly read a headline like that, then jump to all kinds of conclusions. And that happens to all of us every day. No matter what your health concern, past present or future — a quick headline can arouse curiosity or — worse — can satisfy by itself.

Over the years, I’ve had that heart-skipping experience (both good and bad) a dozen times. I’ve watched the news — and I’ve learned to read not just the article from which the headlines derive, but I’ve then looked behind those headlines, sometimes reading the actual studies that created the news.

The big deal about this particular study is that one of the groups studied was comprised of women just like me. I actually fit the profile: age, total hysterectomy, estrogen-only HRT, dosage — almost exactly…..

But then, as happens so often…. once I read the article, I came back down to earth. It turns out that I may have been taking HRT for too many years. Or maybe not. Or it may be better news for women who kept their ovaries and didn’t have surgery at all — natural estrogen. Or maybe not.

… and the bottom line? As often happens, further studies are needed.

Here’s today’s advice: don’t ever be satisfied by reading a headline. The whole point behind a headline is to suck you in…. not give you answers. As a result, it’s very easy to get exactly the wrong impression of the underlying story and frankly, that can be dangerous at times.

If a health headline grabs your attention, look further. Were the people studied the same as you? Gender, age, family history, health challenge, treatments, even geographic location — they can all affect outcomes, and the relevance of the headline and study to you.

If you do decide the headline and story fit you, and if the results are of interest, then trace back to find the study which sparked the article. The article will tell you what journal reported the findings, or what scientist or doctor conducted the study. Just google the clues to trace back to the original, then read the original to make sure the people in the study truly represent you.

And if they do, and if you think the findings will change anything about your treatment or diagnosis, then make copies and take them to your doctor for review. Most often, your doctor will be aware of the new findings; but if not, you’ll be helping not just yourself, but other patients who fit your profile, too.

……. UPDATE !!……..

Some homework for you — get some practice reading behind the headlines …. submitted by Dr. Rich Fogoros, About.com’s resident heart guru, and healthcare system fixer, too …..

This headline came in this week, too, about statin drugs and their relationship to Alzheimer’s. Statin drugs are those that help lower your cholesterol. Give this one a look-see — and see if it applies to you:

Statin Drugs May Decrease Risk of Alzheimer’s Disease

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The NFL says that on any given Sunday, eight players suffer from concussion – yet they are denying disability payments to their players who cannot work due to those injuries after they retire.

And here’s a surprise… the vignette concludes that the NFL may be more interested in profits than it is in the welfare of the players who made those profits for them.

Yeah. Surprise, surprise.

I can’t find a link to the story itself, but here is Cynthia Bowers, the reporter’s, blog post.

But something depressing and sinister crossed my desk just this morning … a link sent by my dad from the Sarasota (Florida) Tribune regarding the sad reality that most Alzheimer’s patients and caregivers must suffer, and as so much of this work does, it breaks my heart.

It tells the story of Arnold Krinsk, an Alzheimer’s patient, who suffered extreme INdignity — violence, blacklisting, moving from one facility to another, and all because the people who were tasked with caring for him just don’t give a d*mn.

Dogs in kennels get better treatment.

Over the span of a year, Arnold was shuffled through five nursing facilities, plus two mental health centers, because he was deemed “difficult.” Because he would get upset and lash out, which so very many Alzheimer’s patients do, Arnold would be expelled — and it would be up to his wife of 60 years, Sara, to figure out where he should go next. The last place she found for him, before he died, was one of compassion, one that could tend his needs and offer him the dignity he so deserved. He died not long after that.

Too often, as Every Patient’s Advocate, I hear horror stories about nursing homes and the way residents are treated like animals. Trying to fix the nursing home, long-term care facility debacle is an advocacy all its own. But because both my mother and my mother-in-law reside in long term care facilities, I take so many of these reports so personally. And I thank God every day that they are both living in fine places, both treated with compassion and caring.

SHAME on those people who work in facilities that treat their residents as sub-humans. SHAME on them for not respecting those in their care. SHAME on them everytime they do something — anything — they would not want done to themselves or someone they love. SHAME on them for sucking all the quality from the life of another human being.

And SHAME on a system that allows that to happen. That system is comprised of people who must look at themselves in the mirror every day. I don’t know how they face themselves.

And don’t tell me the system works like that because there’s not enough money, or not enough staff or not enough of whatever it is. Some facilities have figured out how to make it work — and all facilities should follow suit.

Sorry — everytime I think about how we treat too many of the elders in this country – a la this article — it gets my blood boiling.

	………………
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	………………

But something depressing and sinister crossed my desk just this morning … a link sent by my dad from the Sarasota (Florida) Tribune regarding the sad reality that most Alzheimer’s patients and caregivers must suffer, and as so much of this work does, it breaks my heart.

It tells the story of Arnold Krinsk, an Alzheimer’s patient, who suffered extreme INdignity — violence, blacklisting, moving from one facility to another, and all because the people who were tasked with caring for him just don’t give a d*mn.

Dogs in kennels get better treatment.

Over the span of a year, Arnold was shuffled through five nursing facilities, plus two mental health centers, because he was deemed “difficult.” Because he would get upset and lash out, which so very many Alzheimer’s patients do, Arnold would be expelled — and it would be up to his wife of 60 years, Sara, to figure out where he should go next. The last place she found for him, before he died, was one of compassion, one that could tend his needs and offer him the dignity he so deserved. He died not long after that.

Too often, as Every Patient’s Advocate, I hear horror stories about nursing homes and the way residents are treated like animals. Trying to fix the nursing home, long-term care facility debacle is an advocacy all its own. But because both my mother and my mother-in-law reside in long term care facilities, I take so many of these reports so personally. And I thank God every day that they are both living in fine places, both treated with compassion and caring.

SHAME on those people who work in facilities that treat their residents as sub-humans. SHAME on them for not respecting those in their care. SHAME on them everytime they do something — anything — they would not want done to themselves or someone they love. SHAME on them for sucking all the quality from the life of another human being.

And SHAME on a system that allows that to happen. That system is comprised of people who must look at themselves in the mirror every day. I don’t know how they face themselves.

And don’t tell me the system works like that because there’s not enough money, or not enough staff or not enough of whatever it is. Some facilities have figured out how to make it work — and all facilities should follow suit.

Sorry — everytime I think about how we treat too many of the elders in this country – a la this article — it gets my blood boiling.

	………………
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Mom, who will turn 80 this summer, lives in a “memory center.” That is, a facility that was developed specially for older patients with dementias. It is a wonderful place where the professionals are highly conscientious and respectful of the patients in their care. I hear stories from many of you about your elderly loved ones who end up in horrible situations, so it makes me that much more appreciative of Mom’s situation. Dad is only minutes away and sees her almost every day.

I’ve blogged before about the positive effects music has on Alzheimer’s patients. It seems to reconnect some of those broken pathways in the brain, even if only temporarily. Music brings memories and smiles to those who otherwise seem to have little joy in their lives.

My mother is especially uplifted by music because music has always been a focus of her life. She was a vocal music major in college, directed various choirs, including those at our church while I was growing up, and has always loved to listen to music, whether it was a Broadway musical, the symphony, a record or CD or even attending a child’s or grandchild’s school concert. A case in point — every Saturday night Dad visits Mom, they put Lawrence Welk on TV, and they sing and dance to the music. They are adorable together!

And despite the ravages of her dementia, somehow Mom has retained the quality of her beautiful singing voice, and she remembers the words to all those old songs. Go figure.

But last evening’s activities at the Memory Center are notable. Last night, Mom and Dad went to a prom! Not to be outdone — or out dressed — by young people who are just a fraction of their ages, the residents in the memory center, and their ‘dates’, enjoyed an evening of dining and dancing and singing… a good time was had by all!

Why do I share this with you? Because despite the debilitation, despite the frustrations of the disease (or any disease or condition), despite the sadness at the loss of the spirit of my mother, despite my dad’s, sisters’ and my collective longing for who she was, the fact that Mom and Dad could still enjoy an evening of fun and music together highlights two important aspects of what hasn’t been completely lost: joy and dignity.

Joy? The Prom was an opportunity to remember the aspects of Mom’s life that are still positive — the quality that still exists. As they have so many times in the past, my parents enjoyed an evening out together, doing things they’ve always enjoyed doing.

Dignity? The Prom was an opportunity to recognize that the residents of the Memory Center are truly treated with dignity — which is so often lost in other facilities, and so easily subtracted from the elderly in our culture. Kudos and appreciation go out every day to the wonderful people who work there. They certainly give new meaning to the “prom committee” !!

If you or a loved one suffers from any disease or condition, then my wish for you would be the same. Look for opportunities to maintain or reclaim the quality and dignity of life. It can make all the difference in how the rest of your life is lived.

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