Why I Walk to End Alzheimer’s

My grandmother holding my mom in 1937

My grandmother visited me for a week in 1996 when she had moderate dementia.  To ease the burden of having one caregiver, my grandma traveled between her three children’s homes and would stay for up to four months at a time at each place.  My home was a stop-over one year as she went from my uncle’s home to my mother’s.  I was glad to have her with me, and in my hurried life with little ones, it was nice to slow down and be with grandma in her world for just a bit.

I adored my grandmother who died in 1999 with advanced dementia.  But do you know what I remember the most from her visit?  I remember her asking the same questions over and over, and me repeating the same answers over and over.  I wasn’t prepared.  She didn’t know where she was or who I was.  And whoever I was, I had some of her things that I needed to give back to her!  Talk about a crash course in dementia.  To go from the grandma who used to love on me and call me her “little dumpling” to not knowing me at all was tough — shocking even.

I didn’t know at the time that my dear grandmother would be practice for what lay ahead.

Mom and I in 2010 enjoying a day at a park, right around the time her disease went from bad to worse. This would be her last visit to my home.

Fast forward to 2005.  I am with my mother in the kitchen and she doesn’t know what to do or how to help.  She is lost and seems to find comfort staying at the sink and washing dishes.  She is clearly overwhelmed, and this is the moment when I knew.  She is 68 and slipping away so incrementally it’s almost impossible to see — but I see it here in her face, at the sink in the kitchen.

In 2008 mom can no longer pay bills or make a phone call, and caring for her home has slipped through her fingers like the hair she no longer combs.  Eventually, the names of mom’s friends, children, grandchildren, and even her own name, are gone.  Mom could hardly communicate at the end, long after she lost the ability to do most everything else.

Mom died this year at the age of 75.  Her Death Certificate lists “Alzheimer’s Dementia” as her cause of death, which I’m grateful for in this under-reported disease.

I walk for those who are already gone.  I walk for the more than 5 million Americans who don’t know who they are or who you are, and for their families who love them.  I walk for the 15 million caregivers in this country who are too overwhelmed and exhausted to walk.  I walk for the billions of dollars needed to make the National Alzheimer’s Plan an ACTION plan.  I walk for my children, and my future grandchildren.  I walk for my grandmother, my mom, and for me.

I walk to be seen and heard and I walk because I HOPE.

********************

It’s not too late to register to walk or to donate.  Go to the Winchester – Shenandoah Valley Walk to End Alzheimer’s to join my team and/or make a donation.  Look for Racing Alzheimer’s.  Get more information HERE.

You can also go to alz.org to donate and/or find a walk near you.

2013 Alzheimer’s Disease Facts & Figures Report

1 in 3 seniors dies with Alzheimer's or another dementia.

The Alzheimer’s Association’s 2013 Facts & Figures Report came out yesterday.  It’s not good.  Unlike other disease with decreasing numbers that are being managed or cured, Alzheimer’s disease has growing numbers without a cure or the ability to manage the disease.

Quite frankly, I don’t have the energy to get into what we need to do to mitigate the Alzheimer’s tsunami heading our way.  It’s all been said before, and I wouldn’t have anything new to add.  Besides, I couldn’t say it any better than Nancy Wurtzel in “Dating Dementia” where she succinctly describes where we’re at and where we’re headed.  She also offers practical advice when she says:

We’ll need many more medical personnel and facilities.  We’ll need more education and understanding of the realities of dementia.  We’ll need to provide tangible support to the caregivers who are on the front line.  We’ll need ways to improve the lives of those living with Alzheimer’s disease.

I will say this — this country is in big trouble if we don’t make substantial advances on all fronts.  We’ve been warned.   We know what’s coming if a cure isn’t found.  Like Nancy says, “a big plan is required and it will take commitment and innovation.”  At the very least, let’s not act surprised when the tsunami hits.

You know the saying “hope for the best, but plan for the worst?”
With Alzheimer’s disease, the hope is in the plan.

 

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.

Alzheimer’s Disease is Killing My Mom

Alzheimer’s disease is killing my mom.  Sounds harsh, but it’s true.  It’s deliberately taking over my mom’s brain like a wildfire out of control.  It’s an insidious, controlled blaze that is slowly and methodically destroying the parts of her brain responsible for memory, language, reasoning, walking, swallowing and eventually breathing. It’s a long drawn out death that will most likely have my mom in a vegetative state near the end.

Nothing will put out this fire except the fire itself when it destroys it’s host.

In describing the final stage of Alzheimer’s disease, alzheimersillness.com says,

In this final stage of disease progression, many individuals enter a catatonic-like state, and they are suffering from the worst effects of Alzheimer’s disease. They lose their ability to speak and respond to others, though occasionally words may be uttered. They are unable to sit up, smile, swallow, hold their head up, and their reflexes become abnormal and muscles get rigid. Eventually this end stage leads to death, typically about eight years after they were diagnosed with the disease.

 

I’m telling you this because we forget that Alzheimer’s is a terminal illness.  Well, I know I did — rather, I was in denial about it.  The symptoms of Alzheimer’s shift the focus from terminal illness to memory impairment and strange behavior.   It becomes real easy to focus on how the Alzheimer’s sufferer is no longer normal and how we are coping with the abnormal behavior, rather than acknowledging they are dying a long drawn out death.

We are complacent when it comes to Alzheimer’s disease.  We hear the term all the time and many of us come to believe it’s a natural part of aging, but it’s not.

Quick — what do you think of when I say Alzheimer’s disease?  If you’re like me, you think of memory loss.  But that’s just the first of 7 stages of the disease, with death being the last.   What if I told you that 42.3 million people worldwide will die from brain cancer in the year 2020.  Scary right?  This isn’t true, but if you replace the words brain cancer with Alzheimer’s, that would be true.

Alzheimer’s is a deadly disease not a memory disease.

There is no cure.  Which means my mom is dying.

Yes, I’m angry about this.

Come back tomorrow for “10 Reasons I’m Grateful for Alzheimer’s Disease”

 

Learn the Numbers. Spread Awareness.


5.4 million Americans are living with Alzheimer’s disease.

One in eight older Americans has Alzheimer’s disease.

Alzheimer’s disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

Learn the numbers.  Spread awareness.

Read about the new National Alzheimer’s Plan.

Click Here to consider donating to the Alzheimer’s Association.

 

Our Nation (Finally!) Has a Plan To Fight Alzheimer’s!

Alzheimer’s disease is the sixth leading cause of death, killing more Americans each year than breast and prostate cancer combined.  Yet in 2011, the National Institutes of Health spent over 6 billion dollars on cancer research and less than 480 million on Alzheimer’s research.

Thankfully, Alzheimer’s is finally getting the attention — and research funding it deserves.

Source: NewsCore

WASHINGTON — The Obama administration on Tuesday rolled out a plan to fight Alzheimer’s, setting a 2025 deadline to find ways to effectively prevent and treat the degenerative disease.

The initiatives set out by the Department of Health and Human Services include the funding of clinical trials, a new public education campaign and the development of up-to-date training for doctors and other providers about how to care for Alzheimer’s patients and their families.

Check out the National Alzheimer’s Plan!

More about Alzheimer’s and the new Plan from my favorite guy Brian Williams.

Visit msnbc.com for breaking news, world news, and news about the economy

The Stages of Alzheimer’s and My Mom

Narrated by David Hyde Pierce from Frasier, the clear and concise video below has helped me understand the approximate stage of Alzheimer’s my mom is in.   The brain function descriptions without all the medical gobbly goop is as refreshing as it is educational.

It’s obvious that my mom’s Alzheimer’s is progressing along the described path.   According to this video, there are 7 steps in the progression of the disease, and I would say that my mother is in Stage 4, moving into Stage 5.  This is how the video description is playing out in my mom’s life:

1.  Mom has zero short term memory.  She doesn’t remember what she did yesterday, 2 hours ago, or 2 minutes ago.  She repeats herself quite a bit.

2.  Mom’s words are disappearing.   She has great difficulty forming coherent sentences and uses “filler” words and phrases to help with communication.  Quite often, the end of her sentences have nothing to do with the beginning.

3.  Mom can no longer solve problems, grasp concepts and make plans .  She can’t be left alone because her lack of judgement and problem solving makes her a risk to herself.  She is not able to accomplish a task without one on one guidance.

4.  Mom has become more emotional and I hear that she has her moods, but unfortunately, I haven’t been with her enough lately to witness her mood swings.

The remaining stages are approaching quickly, as there’s already been incidence of hallucinations. The average Alzheimer’s course is 8 to 10 years, and my mom is in her 7th.

Click on the video below to see how Alzheimer’s disease moves through the brain.

What Is Alzheimer’s Disease?

What’s Alzheimer’s?  It had to happen sooner or later, so it may as well be now.  This is dry stuff, but it’s short and to the point. Stick with me.

Alzheimer’s disease is the most common form of dementia. Derived from Latin, dementia literally means “without mind”. There are static forms of dementia caused by a single event such as a traumatic brain injury, and there are progressive forms caused by disease that result in a slow deterioration of the brain. Alzheimer’s is the latter and accounts for roughly 60 – 80 percent of all dementia cases.

Alzheimer’s disease is named after Aloysius Alzheimer, a German neuropathologist who is credited with publishing the first case of “presenile dementia” in 1906. Since then, scientists have learned that Alzheimer’s is characterized by two unusual types of neuron damage in the brain: Plaques and Tangles. While there is not a consensus on plaques and tangles being the cause or the result of Alzheimer’s, they are described the following way.

Plaques are a sticky protein fragments called beta-amyloid that builds up in between nerve cells.

Tangles are tangled fibers of a protein called tau (as in “wow”) that build up inside cells.

Most people develop some form of plaques and tangles as they age, but people with Alzheimer’s tend to develop far more and at a faster rate. Plaques and tangles can form throughout the brain as part of the normal aging process, but the part of the brain important to memory is the initial target in people with Alzheimer’s before spreading to other regions.

So far, scientists do not know the exact role the plaques and tangles play in Alzheimer’s disease. But most experts believe they play a crucial role in blocking communication among neurons and disrupting critical processes that are responsible for cell survival.

It’s the destruction and death of these nerve cells, believed to be caused by plaques and tangles, that results in memory failure, personality changes, and difficulties carrying out activities of daily living that is the hallmark of Alzheimer’s disease.

And now you know! Thank you for reading to the end. : )

For more information, go to Alzheimer’s Disease Research.