The Sine Wave Continues

“Life itself is a privilege, but to live life to the fullest – well, that is a choice.”  Andy Andrews

That is actually a good thing.  When asked, how Cat is doing, I always reply she is like a sine wave in slight decline.  Some days are better than others.  Rarely do I see sharp declines but in every case I will see within a month or two an uptick on what she can still do or in regards to her behavior.  

Unfortunately about 3 months ago the downward turn of the sine wave began and continued until about two weeks ago.  From time to time I would record how she is doing on a daily basis but after awhile, I would find it depressing so would delete the document.  So that is why I can only give an approximation.  As you know I do post to my blog from time to time on her condition but usually I am talking about something positive like this one.

Stages of Alzheimer’s

There are two different scales they use to track the progress of the disease.  One is 4 stages and the other is 7.  I tend to use the seven stages.  1 and 4/7 are the same on each.  1 is when the person actually has the disease but does not know what it is or in some cases has not showed any signs of ALZ.  4/7 are when the person is basically bedridden.  For Catherine she has been bouncing back and forth between 5 and 6.  Prior to 6 months ago, mostly 5 and within the last 3 months, mostly 6.  I will not go into detail what that all entails.

As you know I am always looking for ways to hold off stage 7 as long as possible and to continue to enjoy life as much as we can. I have mentioned in an earlier post on us doing the Doctor Dale Bredesen protocol and you can read about what is involved here. 

Many of his recommendations we were already doing and our lifestyle basically revolves around his suggestions.  In Atlanta we were able to find a practice that follows his protocol and we had plenty of blood, urine, etc. taken and analyzed.  As best as possible, I give her the recommended supplements but did not see any improvement over time.  In some cases it can take 6 months or more and usually works best for folks early on.

Two weeks ago I met up with my sister, Gwen, my sister in law, Joan, my son, Shawn, my daughter in law, Cassie and my two grands, Luca, who just turned 7 months and his older sister Lily, clocking in at 2 1/2 years old.  We spent a lovely week in Washington, VA aka little Washington.  While there we also were able to have lunch with Karen and Aprille from previous Marathon Tours and Travel trips.  They live nearby in Sterling, VA. 

I gave everyone the heads up on the recent decline of Cat so they would know what to  expect.  I was also looking forward to the help that each could provide me since by this point I was pretty worn out.  I have written about the importance of taking care of oneself in the past and you can review that blog entry here. 

Horse Therapy 

The horse came over to say hello to the Cat in her lap

Not  unexpectedly I saw an immediate up tick in Cat’s cognition and behavior.  I talk about the role socialization plays and benefits for folks with ALZ in my book Running All Over the World, Our Race Against Early Onset Alzheimer’s.  The negative effects of isolation due to Covid have been well documented. 

Thinking there might be more to this event rise on the sine wave roller coaster I observed her and my family members very closely.  I also took a hard look at the past two weeks and noticed that our typical exercise routine had been taking a backseat to the cold weather we had been experiencing.  We did do a 10k back on February 12th in Mesa, AZ but besides that nada.

I won’t go into all that I have discovered about exercise here but once again you can reference my book or one of my recent blog entries on the benefits of exercise not only on those already have ALZ but also how it can delay the onset.

Winter Months

The winter months are tough for us and especially the last two years since we usually cruise the Caribbean on and off during the winter months prior to Covid and have not done so since.  No one likes to bundle up to go for a run and it is especially tough for me since I now have to dress and undress Cat.

My observations of Cat with family also brought an awareness of how we have been typically been spending our days and the comparison on how are days were spent with family.  One thing I did notice was the lack of TV.  It is not recommended that folks with ALZ in the later stages watch large quantities of TV, especially the news.  They are overly sensitive to the negative stories and have a tendency to think that these things are actually happening to either themselves or their family members.  Unfortunately I have not been very  diligent in that regard.  In contrast when the TV was on in VA it was mostly kid shows with a lot of singing and Lily was always trying to get everyone to join in with her.

As my search continued to find what is best for Cat I ran across two articles on music and it’s benefits for people with ALZ.

Here is the first one

The brain is powerful; the soul even more so. The combination of the two is the beginning of wisdom.

Music and the creative arts have a way of mending minds—mind-to-soul.

In Alzheimer’s disease and other forms of dementia, music and the creative arts, can often keep people whole as they grip life, tantamount at times to a terrifying ride on the Coney Island Cyclone.

Take the case of Glen Campbell, an icon in music and in life, who ultimately succumbed to Alzheimer’s after a long, bruising battle—buttressed by the love and support of his wife Kim and children.  On the heels of his Alzheimer’s diagnosis, Campbell embarked on a celebrated “Goodbye Tour” with three of his children in the backup band. His farewell was the focus of an award-winning 2014 film, Glen Campbell: I’ll Be Me, produced by Trevor Albert and directed by James Keach.

“Some inside this disease can talk about it,” notes George Vradenburg, co-founder of UsAgainstAlzheimer’s. “Few, probably a handful, can talk about it in ways that inspire…It is remarkable to see, and it says something about how we know or do not know how the brain works…There is something about training one’s brain for a singular moment in life. I saw this with Glen Campbell. In what was to be the final tour, he had scheduled three to five concerts—150 concerts later, Campbell would be on stage, playing music he had played all his life, yet when he got off stage, he often didn’t know where he was.”

Campbell’s innate genius was the kind of musical memory that the remarkable non-profit program Music Mends Minds seeks to nurture.  And then there’s the legendary Tony Bennett with the same gift of muscle memory in music. Bennett, now in the throes of Alzheimer’s, was the subject of a recent “60 Minutes” segment hosted by Anderson Cooper.

“On any given day, the 95-year-old may forget a lot about his past life,” writes Brit McCandless Farmer for CBS News. “He (Bennett) likely won’t recall the stories behind the photos that fill his New York City apartment, not the ones with Frank Sinatra or Rosemary Clooney, not even the one with Bob Hope — the man who gave Anthony Dominick Benedetto his stage name: Tony Bennett. But when Bennett hears that music, the soundtrack that has accompanied more than seven decades of American life, the singer that millions have come to know, returns.”

Like Campbell, Bennett’s brain “is built around his music.”  Such also is the case with the late Irwin Rosenstein, the inspiration for Music Mends Minds, the creation of his wife Carol, who has offered a ray of sunshine for those suffering from Alzheimer’s and other forms of dementia.

Music Mends Minds was founded in 2014. It fashions musical support groups nationally and internationally for individuals with Alzheimer’s, dementia, Parkinson’s, traumatic brain injury, PTSD, and other neurological disorders.  The vision of Music Mends Minds, now working closely with Rotary International Clubs, is to give hope to and encourage afflicted individuals around the world and their families, friends, volunteers, and caregivers.

Irwin had a great ear for music throughout his life, Carol says, noting he was a marching band member at the University of Pennsylvania and enjoyed playing saxophone and the piano. Professionally, he worked in real estate law for the Federal National Mortgage Association (Fannie Mae). Irwin passed away in 2021, having been diagnosed with Parkinson’s disease, an advancing form of dementia, on his 70th birthday in 2006, and later with dementia in 2015.

“Our home in Los Angeles was always filled with music,” Carol says. “We became volunteers for the Los Angeles Philharmonic. And we spent time together at the Hollywood Bowl, the Dorothy Chandler Pavilion, and the Walt Disney Concert Hall.”

Then came the diagnosis. “This was shocking to me, especially having spent my life in healthcare and knowing a little bit about the challenging journey ahead,” she notes. After several years. Irwin’s prescribed Parkinson’s medication brought on hallucinations and agitation, as he believed there were other people living in his home.

Carol immediately called Irwin’s neurologist who advised reducing the dosage of Irwin’s medication, the cause of the hallucinations.  “Then one day,” Carols recalls, “when Irwin was feeling very low from reducing his medication, he chose to play his piano… and it became clear to me that something extraordinary had just happened. I called his neurologist again, who told me that I was witnessing the power of music changing brain chemistry.”

Carol was advised that playing the piano had such a complex neurological demand on Irwin that his brain pushed harder and harder for more natural dopamine (a neurotransmitter in the brain that sends messages between nerve cells). “It became clear that the music empowered Irwin; he became more aware, responsive, confident, energetic, talkative, and hopeful,” she recalls.

Carol asked Irwin’s doctor if this process meant “we could find some like-minded souls who had a similar diagnosis, so that we could all gather in a social setting to make music together—thereby changing everyone’s darkness into light.”

The rest is history.  After witnessing this dramatic transformation in Irwin’s condition, Carol was inspired to start a band to help others with neurodegenerative diseases, and The 5th Dementia Flagship Band was born. Since then, Music Mends Minds has grown to 20 bands nationally and has hosted 24 concerts.

Research shows that music can improve speech, attention, executive functioning, orientation, memory, and reduce anxiety, agitation and depression. The same is true for those blessed with other creative talents, as I’ve found it to be the case in my writing, as my journey continues down this twisted dementia path that has taken several family members.

In 2018, Carol was nominated for a “CNN Heroes Award,” which honors everyday individuals who do extraordinary things to change the world. Carol made it to the top 20, out of thousands of nominees. Then in 2020, “CNN Heroes” returned to document Carol’s pivot to Zoom sessions during the pandemic.

“We were featured in a story about the universal role music plays in changing brain chemistry and in helping to combat depression and isolation among seniors with cognitive issues,” she proudly says.  Music, indeed, has mended minds—yet another pushback on the oftentimes and sadly inaccurate stereotypes of Alzheimer’s and other dementias.

You can follow this link to the second one

These articles brought back memories of taking care of my mother.  My sister Gwen would always bring an updated play list for her to listen to when she visited. I would make sure she listened to it also during my visits.  It also reminded me of Catherine and I’s Motor Home trips when we would always have the radio playing the oldies.

So with all this new information in hand I made a new plan of action moving forward.  Now we have the TV on sparingly with comedy shows being the dominate format to watch.  In the car, hotel, during runs and walks and even on airplanes music will always be playing.  Mostly music from the 70’s and 80’s.

We now dress every morning, except for travel days by plane, for exercise.  We throw sweat pants over top of our running shorts or tights thus always ready to go for a run or long walk.  That does require me to change our clothes three times a day but it is worth it if I can keep the lines of communication open between her mind and body and thus keeping her mobile as long as possible.

Lastly, for me to seek warm environments as much as possible.  Right now we are in Tallahassee, FL on what will be our first ever month long road trip by car.  The plan is to stay here for a week then move over to Pensacola, FL for a few days then on to Gulfport MS for state 42 for half marathons.  This one with Mainly Marathons, our first in 4 months.

Then head back north to make it to Bluefield, WV by the end of the month.  Half Marathon number 43, once again with Mainly.  Unlike us, only doing two races with them, we have a friend, Ernst, that will do 11 Marathons in 11 days.  That will be 4 states with the Gulf Coast Series, and another 7 with the, Appalachian Series.

Plan B, will be for us to bail out when we head back north and drop the car in ATL.  Then fly to Richmond and pick up Mainly in Bluefield.  I can only drive the equivalent of 4 hours a day which actually takes me 6 hours when you add the stops about every hour to stretch me legs and get some air and of course some Starbucks.   

From the quote above you can see that no matter the circumstances our choice is to live life to the fullest.

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