If It’s Not Alzheimer’s, What Is It?

A jumbled up puzzleIn “Mom Update: February 2013” I wrote about how quickly mom’s disease is progressing and how it might be something in addition to or instead of Alzheimer’s disease.

Oh we’ve been calling it Alzheimer’s disease, but the truth is — we don’t know what mom has.  Mom had an MRI in 2006 that ruled out other brain problems like a stroke or a tumor, but we never received a definitive diagnosis — just “probable Alzheimer’s.”

With Alzheimer’s making up the majority of all dementia cases, it’s an easy diagnosis to go along with.  Add that my grandmother and great-grandmother “had Alzheimer’s,” and you can see how believing the diagnosis was even easier.

But we didn’t really know what my grandmother and great-grandmother had.  And we don’t really know what mom has.

The doctor jumped to a conclusion and so did we.

There is plenty written about the misdiagnosis of Alzheimer’s disease including a 2011 study that found half of Alzheimer’s cases are misdiagnosed.   With Alzheimer’s making up most of all dementia cases, and given that it can’t accurately be diagnosed until after death, probable Alzheimer’s is an all too common diagnosis doctors make.

Another article titled “What Type of Dementia Is It?” outlines the importance of getting an accurate diagnosis in an effort to provide the best care.  There are over twenty different types of dementia including rare forms — one of which my mother might have.

I feel a little foolish and naive about not questioning mom’s diagnosis.

It’s too late for diagnostic testing on my mom.  She would need to be sedated to get an accurate brain scan — and sedation and dementia don’t mix well, quite often causing further decline.

If we want to know what mom has, at this point, there is only one way to find out — an autopsy.

Autopsy is a scary word, and scary to think about.  But I’ll be thinking about it.

How important is it to know what mom has?  How will we benefit from knowing?  What’s the downside of not knowing?

Have you had to make this type of decision before?

A Pacemaker For The Brain?

A “pacemaker for the brain” to help slow Alzheimer’s and retrieve memories is all over the news right now.  Researchers used Deep Brain Stimulation (DBS) on a man back in 2003 that seemed to unlock old memories.  This led them to think about the memory loss in an Alzheimer’s brain, and if this method could perhaps help those inflicted with this disease.  “Implanting electrodes into the brain isn’t new” says USA Today article, but it’s new for the Alzheimer’s brain.

The potential for science curing Alzheimer’s, cancer, and other diseases is encouraging and even exciting, but the idea of putting electrodes in the brain to cure a sick brain, while it does have merits, seems a little backwards.  This endeavor highlights two things:

1.  How incredibly amazing our bodies and brains are.  The Alzheimer’s brain is a sick brain.  The beta amyloid plaques and tangles are our brain’s response to something not right.  Our body knows why the plaque builds up, but scientists do not.

2.  How science and the medical profession is so focused on easing our symptoms rather than finding the root cause of our physical maladies.  It seems a new drug, or an electrode in this case, is the focus rather than preventing the disease in the first place.

Now I realize some people are trying to find a cure for Alzheimer’s and other diseases, but for the most part, drug therapies are being promoted for just about everything.  In fact, drugs to “fix” our symptoms are so prevalent and profitable, that I would imagine curing our diseases would not be a smart business move.  So I don’t know — are there more folks working on preventing and curing diseases or on developing responses to diseases?

There’s a lot of talk lately on inflammation and how it could be the root cause of many diseases, and I’ve heard that Alzheimer’s is “inflammation of the brain.”  So when I think of the electrodes being implanted in a brain, I picture a car battery that needs to be jumped, but the terminals are full of gunk.  We can jump the car through the gunk, or we can clean off the gunk and start the car on it’s own.

I hope more people are working to clear the gunk rather than working on making more jumper cables.

* Disclaimer:  I do not mean to offend anyone currently on a drug therapy — drugs are needed and helpful in many cases.  I just hope we are focused on curing diseases rather than just managing their symptoms.

Preventing Alzheimer’s Disease: What Do We Know?

The National Institute on Aging, part of the NIH has just published a 24-page booklet about Alzheimer’s disease — what it is, prevention strategies and what we can do to help fight this disease.   It’s a general overview that’s easy to read for those of you who may be in your own race.

Preventing Alzheimer’s Disease:  What Do We Know?


10 Ways To Keep Your Brain Sharp

When I read or hear news confirming the possibility of preventing or delaying Alzheimer’s I am renewed with hope!  The idea that my future can be influenced by the choices I make today is pretty powerful and it helps me stay the course of being an Alzheimer’s Warrior.

That’s why I love this recent article in the Minneapolis Star Tribune titled “10 Ways To Keep Your Brain Sharp.” It offers clear and simple ways to love your brain, with exercise being the top two.   GET MOVING is #1 and says, “If you do only one thing to keep your brain young, exercise.”  This is my motivation — nothing has given me a better reason to lace up and break a sweat.  PUMP IRON is #2 on the list.   I don’t pump iron.  Yet.

The bonus?   A healthy brain is just ONE of the benefits of following this list.

Go to “10 Ways To Keep Your Brain Sharp” to learn more.

What are you doing to keep YOUR brain healthy?

Alzheimer’s: Why Are We Doing So Little?

I love TED Talks!  If you don’t know what I’m talking about, go to TED.com and search for anything — but please come back.  TEDMED extends into the world of medicine and wellness, which is where the video below is from.

Gregory Petsko, Chair of the Department of Biochemistry at Brandeis University, gives a presentation on Alzheimer’s disease that is easy to understand and with a sense of urgency.  In the video, Dr. Petsko tries to answer the question, “Why, in the face of this oncoming tsunami of Alzheimer’s, are we doing so little?”  He then offers four possible answers.

1.  Stigma.  The way Alzheimer’s impacts the brain and ultimately the actions of the afflicted can come across as a mental illness.  They act strange and we don’t know what to do with them — so we pretend they’re not there and they become invisible.

2.  We all get senile as we get older right?  Wrong.  But so many people accept the senility of an Alzheimer’s sufferer as normal.  It’s not.

3.  Alzheimer’s patients are not able to advocate for themselves.  They can barely communicate effectively  — how would they ever launch a plan to improve care and funding for this disease?

4.  The caregivers who are caring for their loved ones are just too tired and overwhelmed to take on anything else.

So who will speak up for Alzheimer’s disease to garner more attention and funding? 

Perhaps it’s people like you and I who are watching our loved ones succumb to this disease, but who still have a VOICE.  Rather than wait and hope the disease doesn’t find us, what if we were proactive in our efforts to fight this disease?  And what if our fight made such an impact that funding and research was increased and the number of Alzheimer’s sufferers was decreased?

Learn more about what you can do to help elevate Alzheimer’s from a disease to a cause by becoming an advocate for the Alzheimer’s Association.  I have joined the cause.  I don’t know what I’m going to do yet, but I’ve joined.

This is a 16 minute video that’s packed with information.  Check it out to see why I now imagine little garbage trucks going to the recycle bin inside my brain rather than the garbage dump.