Archive for the 'Alzheimer’s' Category

A Reversal for Alzheimer’s Disease? Maybe. Read Behind the Headline.

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.

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Alzheimer’s Patient “Wakes Up”

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!

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Study the Studies: Too Good to Be True?

My mom turned 80 years old on Wednesday.  She lives 1500 miles away in an Alzheimer’s Memory Center.  We did the usual things;  sent a card, flowers, phone calls…. and she sounded good on the phone, although she couldn’t have told you it was her birthday, or who we were on the other end of the phone.  I love to hear her sounding happy.  It breaks my heart that she is so disconnected. I love that my dad keeps her so busy and as happy as she can be under the circumstances.

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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CBS Reports on NFL Concussion Stance

If you were interested in the interview with  Brent Boyd about the concussions he suffered while playing in the NFL, and his concern over reports of the cause of death of   Andre Waters, you’ll be interested in my blog post last February:  Football, Concussion and Suicide.

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.

The Darker Side of Alzheimer’s Care

So much positive reaction about Alzheimer’s and dignity, as I blogged about a few days ago…

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, Alzheimer’s and the Prom

I’ve mentioned previously that my mother is an Alzheimer’s patient.  She — and our entire family — have suffered from this horrible disease for eight years or so.  If you have a loved one who suffers from Alzheimer’s, you understand how heartbreaking it is.  The mother I have loved all my life is no longer with us.  My dad is exhausted from trying to maintain as much normalcy as he can in their lives.  That exhaustion takes its own toll on Dad’s health.

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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Alzheimer’s, A Conversation

This morning on my radio show, we aired my interview with Dr. Sharon Brangman, geriatrician and expert in Alzheimer’s Disease and other dementias.  As the daughter of a mother who is in the advanced stages of this horrible disease, I was moved to tears by the conversation.  It was an opportunity to learn more about it, and even ended with a bit of hope.  Here are some points from the conversation — a few basics, and some information that was new to me, too.

  • The numbers of victims are increasing exponentially, mostly because people are living longer, and because of the growing numbers of baby boomers.
  • Dr. Alzheimer was the person who distinguished “his” disease from other forms of dementia — about 65 years ago.  The former term was “hardening of the arteries.”
  • How do we know the difference between forgetfulness and the onset of dementia?  If the non-remembering begins to get in the way of life, then it may be dementia, including Alzheimer’s.  When we can’t remember how to do something we’ve always done, or can’t remember names of people we see frequently, or forget to take our medications consistently, or anything that becomes an interference with everyday living.
  • Caretakers need almost as much care as the actual Alzheimer’s patient.  (My opinion: perhaps the patients are patients, and the caretakers and families are the real “victims.”)
  • Dr. Brangman’s metaphor for the physiology of how Alzheimer’s works:  think of the brain as a highway system of thought patterns.  A protein begins to build and gunks up the highway, putting roadblocks in front of the thought patterns so they can’t be used.
  • There are a handful of dementias — Alzheimers is most prominent, but not all have the same physiology and some are treated differently.  It’s important for doctors to discern which dementia is causing problems so it can be treated most effectively.
  • Research shows that people who continually use and challenge their brains may keep Alzheimer’s at bay — and taking the above metaphor another step — it’s because the brain develops more highways for the transport of ideas when it is being used and challenged.  With more highways available, the protein does not so easily block the passage of thoughts.
  • Studies about the effect of music on Alzheimer’s patients have shown that familiar music elevates a patient’s mood and brain function.  Dr. Brangman hypothesized that it’s because music thoughts are stored in so many areas of the brain, that there are enough of those above-mentioned highways available to translate the thoughts.
  • On the horizon:  research that will help develop therapies that will regrow nerve growth cells, and/or repair or dissolve the problems caused by that gummy, gunky protein that develops in the brain.

How do we keep Alzheimer’s at bay in our younger years?  Eat right, exercise, don’t smoke…  all those good practices that seem to be the answer for keeping any health-related problem out of our lives.

End of post for today.  I’m going to go eat a salad and walk a few miles.  Then I’m going to call Mom to tell her I love her. 

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