AlzHub

Life With Alzheimer's #1

I like reading encouraging and uplifting stories about how people deal with Alzheimer's disease. 

Stories that are about someone dealing with the disease themselves, loved ones dealing with someone else with the disease or, best of all, people dealing with issues that come up together.

Stories about people who, when the going gets tough, don't run the other way.

Stories that renew my faith in love, humanity and the willingness of people to help others.

Stories that we can learn from.

I've linked to stories like this before but I want to make this a regular, periodic part of this site.

If you come across stories, or have stories of your own that you'd like to share, feel free to send me an email.
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And now, Life With Alzheimer's #1:

This is a story about a married couple, Mary and Darrell, and how they have dealt with Mary's memory loss.

"But seeing the married couple so long ago is only part of the reason for pause. The rest has to do with the writing on the picture.

''Mom'' is written low over Mary's dress.

''Dad'' is written on Darrell's left arm.

At almost any other house, this would surely be the work of a child who got carried away with a pen.

Not here, though. Mary wrote the words a couple years ago.

She simply didn't want to forget her husband.

Or the woman she used to be."

Click here to read the complete article by Scott Patsko from the Morning Journal in Ohio.

Happy Birthday Mom!

Celebrated moms birthday last week.  With Alzheimer's, you can never be sure how someone will react to a situation, like a birthday party.  Luckily, you can learn from past experiences and make adjustments as you go along.  Moms last two birthdays provide a good example of this.  For those not familiar with Alzheimer's, these examples are pretty typical.  For those with a loved one with Alzheimer's, this will probably all sound familiar.

A year ago, it was moms first birthday after moving into the assisted living home.  My sister and I wanted to do something special for her so we asked if they could make a cake, we reserved the small private dining room off the main dining room, we had lots of little party favors and balloons for everyone and we had the women mom normally sits with for meals join us as guests.

The cake was a highlight.  The best birthday cake I've ever seen.  We were expecting a small cake big enough for our little group, but they brought out a huge decorated pineapple cake that even had rose petals from the garden sprinkled across the top.  The cake was big enough to feed every resident and staff and then some.  Amazing. 

Everyone had a good time.  We ate, sang happy birthday, played with the party favors and mom opened a couple of gifts.  Part of the time mom knew it was her birthday. Part of the time she wasn't sure who's birthday we were celebrating but she was enjoying herself anyway.  After the party, we walked mom to her room.  We visited there for a while and when we left for the day, everything seemed great.

You never know how problems will manifest themselves.  The party must have been too much and left her overstimulated and agitated.  She called several times a day angry because she wanted her car or she needed a ride home (referring to a place my parents had moved from about 15 years earlier).  She needed to get dinner ready for her husband (who had passed away a few years ago) and even insisted that her parents were expecting her to visit.  This went on for about 3 days before she calmed down and things got back to normal.

We learned our lesson.  The next birthday would be much more low key.

This year I decided to take mom out for lunch.  This would allow us to get out for her birthday yet keep things pretty routine since I take her out to lunch almost every week anyway.  I also stopped on the way and picked up a couple of cupcakes (instead of a cake) so we could have something when we got back from lunch.   I brought a candle to put in her cupcake ready to sing happy birthday to her but she wanted to skip all that and just eat the cupcakes.  So that's what we did.

As mom walked around, the other residents wished her a happy birthday.  The staff wished her a happy birthday and gave her a hug as they saw her.  They taped a happy birthday sign and some balloons to the window near moms seat in the dining room.
My sister visited her separately to wish her a happy birthday. 

This year went much better.  We were able to celebrate her birthday, others got involved, and we kept it at a level that mom could handle.  I visited her a couple days later and didn't notice any changes in her behavior. 

It's like the subtitle of my site here says: "A learning experience".  Things are always changing.  You take in as much information as you can, learn from it, adapt and do the best you can.  I guess my goal is to keep her safe, help her to live the best life she can and allow her to push her limits when she wants to. 

Happy Birthday Mom!

Alzheimer's Study - Reversing Memory Loss In Mice

Researchers at the University of Minnesota, using genetically altered mice with a defective Tau transgene that they were able to turn on and off, have demonstrated that memory loss from Alzheimer's disease may be reversable.  Tau is one of the two proteins (along with beta amyloid) thought to be a cause of the damage associated with Alzheimer's. The Tau transgene in the mice caused memory loss and changes to the brain similar to what occurs in Alzheimer's patients.

Researchers were able to show that when they turned off the defective gene, the mice not only continued to learn but were able to regain some of their memory. 

The testing showed that the earlier the damage to neurons in the brain is stopped the better.  Damaged neurons can recover and continue to learn.  The further the disease progresses and the neurons die, the less chance for recovery.

Another finding of the study is that neurofibrillary tangles, thought to be a cause of memory loss, may not be a factor after all.  The tangles appear to be a symptom of Alzheimer's but the memory of the mice in the study continued to improve even as the tangles increased.

"There's such a stark contrast between the accumulation of neurofibrillary tangles and the improvement in memory that makes it obvious that the neurofibrillary tangles could not be the cause of memory loss," -U of M neurologist Karen Ashe.

 
This study points out the need to find a cure as quickly as possible.  The recovery aspect won't matter until a way can be found to stop the cause(es) of the disease.  People who would have developed Alzheimer's after a cure is found will be spared by the cure.  The people impacted by this are those that will already have developed Alzheimer's by the time a cure is found. This could mean a second chance.  Let's try to keep the number of people affected to a minimum.  The only way to do that is to find a treatment or cure sooner rather than later.

For more details and description of the testing, see the following articles:

New Alzheimer's research shows reversal of memory loss - Lorna Benson - MPR

Researchers reverse memory loss in mice - Mayo Clinic

Petition For U. S. Postal Service "Alzheimer's Research" Stamp

There is currently a petition underway to get the U. S. Postal Service to issue a "Alzheimer's Research" stamp.  The stamp will be used to to raise awareness of Alzheimer's and to raise funds for Alzheimer's research.

The petition has over 80,000 signatures so far but needs as many as it can get to demonstrate the need and public support for the stamp.

The petition also has a section where you can add your own personal story to send to the Citizens Stamp Advisory Committee.

You can sign the petition here.

Illinois Invests In Stem Cell Research

Illinois has now become the fourth state to use public money ($10 million) towards stem cell research.

Illinois follows California ($3 billion over 10 years), Connecticut ($100 million over 10 years) and New Jersey ($150 million for a stem cell research lab with a total overall proposed investment of $380 million).

Project Lifesaver Goes Live In Monrovia, CA

I had written about this back in September of 2004 when the city council approved the money necessary to join the program.  I'm happy to see that Project Lifesaver has gone live in Monrovia as of July 6th 2005.

The cost is slightly more than originally reported ($280.00 for the wristbands and $10.00 / month for replacement battery and band) but local service groups will help with the costs so that no family is turned away.  That's what I meant in my original post about being a "community".

Monrovia is the first city in Southern California to take part in the program.  Hopefully many more will follow.

Links:

Project Lifesaver

City Of Monrovia Website

2005 Alzheimer's Association Maureen Reagan Outstanding Advocate Award

Fay Blix, an Elder law attorney from Laguna Hills, has won the Alzheimer's Association 2005 Maureen Reagan Outstanding Advocate Award  The award is given by the Alzheimer's Association to the nation's greatest advocate for Alzheimer's.

I wish there were easier access to info on this but here's a link to an article in the Orange County Register.  (Free registration required).

IQ, Active Lifestyle And Alzheimer's Risk

A recent study published in the July 2005 issue of The Journal of the American Geriatrics Society indicates that higher IQ scores and a more active lifestyle, even as early as high school, could reduce the chances of developing Alzheimer's in later life.

Luckily, the study shows that a high IQ and an active lifestyle can help reduce the risk independent of each other.  If you are smart, you don't necessarily also have to be an athlete.  If you are athletic, you don't necessarily also have to be smart.

The study's lead author, Thomas Fritsch, Ph.D. also adds the following:

"Our findings confirm that markers for dementia risk can be found early in life. However, while our research implicates a role for IQ and activity level in youth, many other factors, alone or in combination, also influence who will and will not develop dementia. As we know, some very bright and active people develop dementia, while others who are less gifted and who were inactive as teenagers, do not. This indicates that the causes of dementia are complex and are determined by a host of factors."

I appreciate honesty like that.  So much is learned from these studies but they are just steps in the journey.  There is a long way to go yet and a lot to learn.

Links:

High School Achievers Less Likely to Develop Alzheimer's Disease - MedPageToday.com

Study Links Adolescent IQ, Activity Levels With Risk Of Dementia - ScienceDaily.com

Gum Disease Linked To Alzheimer's Disease...Or Not?

Sometimes the news about Alzheimer's puts me in more of a skeptical mood than anything else.

I was going to write a post about all the recent articles reporting on a study involving sets of twins that found a possible link between gum disease and Alzheimer's disease.
The more I read though, the more I think the information from the study is so preliminary that there really isn't much news there.

Here's some examples why:

1) Articles reported that there was a "significant impact" or a "strong link" between gum disease and Alzheimer's disease.  I think the way it was worded on the Alzheimer's Association website stated it best.  The Alzheimer's Association referred to a "pattern" of risk factors that could account for one twin developing Alzheimer's.  A "pattern" is a better word to use.  A difference between the twins was found rather than a connection between gum disease and Alzheimer's.

2) According to the Alzheimer's "Bad Teeth" Link article on RedNova.com:

"Using background information about their health, they discovered a large number who had Alzheimer's had suffered with loose or missing teeth at an early age, which the researchers used as a crude indicator of gum disease."

A connection is only as good as it's weakest link.  There must be a lot of reasons why someone would have loose or missing teeth that don't have to do with gum disease.  And how many things can lead to gum disease?

3) More from the Alzheimer's Association website:

"The researchers found that no single risk factor could explain in all cases why one twin would become demented or why the twin sibling would not. However, they did discover several patterns. The twin with dementia was more likely to have had a stroke, periodontal disease earlier in life (an index of exposure to inflammation), and fewer years of education."

So many articles focused on gum disease but that was just one of the factors (or patterns) found.

This is more of a critique on the news than anything else.  I'm sure there is a lot more to the study than what gets reported.  Gum disease may turn out to be a significant factor in Alzheimer's disease.  I guess the point of all this is: At this point in time, keep brushing your teeth but don't bet your future that doing so will give you anything more than healthy teeth.

On a personal note:  My mother is 80 years old, still has all her own teeth and has rarely had so much as a cavity.  She still developed Alzheimer's.  There are so many factors involved and so much still to learn.

Link:

Alzheimer's Association

Healthy Gums May Help Fight Alzheimer's - WebMD.com

Memory Ride For Alzheimer's Research

The 9th annual Memory Ride For Alzheimer's Research is coming up this July 16th - 17th.  The 150 mile ride (from Brattleboro, VT to Boston, MA) is held each year to raise money for Alzheimer's disease research.

Corporate sponsers cover the cost of putting on the Memory Ride so that 100% of donations raised go the Memory Ride grant managed by the Massachusetts Alzheimer's Association to put toward research.

For more information, visit the Memory Ride home page. They have registration info, FAQ's and photo's from last years ride.

If you'd like to donate, there is also a link for "General Donation" on the left side of their website.

Link:

Memory Ride For Alzheimer's Research