When Alzheimer’s hits the young (5×8 – 5/31/12)

The challenges of early dementia explored, public defending is not a ‘thankless’ job, start using common sense, the connection between an Irish rower and the Ojibwe, and disappointment in the trip of a lifetime.


1) THE CHALLENGES OF EARLY DEMENTIA EXPLORED

An estimated 5.4 million Americans have Alzheimer’s. Early-onset Alzheimer’s disease, commonly known as young-onset Alzheimer’s disease, afflicts people under 65 and accounts for less than 10 percent of cases of the disease, the BBC reports. That explains why the condition in the young gets little attention.

It should, the BBC profile suggests, because the effects are different from the Alzheimer’s that strikes the old.


To most adults, let alone children, the situations the Henleys face every day would be hard to bear. That it often affects families with young children is just one of the distinguishing factors of young-onset Alzheimer’s.

Little is known about the needs of children in early-onset families. But these children are going through a profound role reversal, which can lead to confusion and fear.

“It makes them feel that it’s something they’re doing, that it’s their fault,” says Caroline Rosenthal Gelman, associate professor at Hunter College in New York. These children have to deal with both the disease and the anxiety and distress it causes their other parent.

“It’s a loss of both parents, in a way,” she says.

It’s an incredibly moving story that could use a dose of hope. But for the family profiled, of course, there isn’t any.

2) PUBLIC DEFENDING IS NOT A “THANKLESS JOB”

The anonymous Minnesota public defender who writes the blog, “Not for the Monosyllabic,” always provides a fascinating look at life inside the justice system.

She delivers again today with a post about a case she tried and lost. Her client went to prison. Then he wrote a letter to her and to her boss thanking them for their work on his behalf:


That’s why I do this job. To make a difference for someone, one person at a time. We may not always win, but at least someone put up a good fight for them and at least they didn’t lose alone. At the end of the day, it’s been my experience that most of my clients just want someone to stand with them, stand beside them, believe in them, and stand up for them. Win or lose, they just want to know they weren’t in this alone.

I may lose a lot court as a public defender, but I think I gain a lot too. Being able to see the person behind the court case and to be able to be the only person (and sometimes the first person ever) to listen to them and to go into the battle for them is what gives me purpose in life. It’s hard, it’s tiring, and sometimes (a lot of the time) I want to give up because I feel like I can’t do it anymore. But, then, I get a letter or an email or someone calls me crying with relief because they don’t have to be so afraid about what to expect anymore and it makes my whole day light up.

“You can’t be something to everyone, but you can be everything to someone,” she confirms.

3) START USING COMMON SENSE

On my car’s bumper is one of those “Start Seeing Motorcycles” stickers, aimed at car drivers who don’t pay attention to motorcyclists. There should also be one aimed at motorcyclists: “Don’t Be Stupid.” It was only coincidence that after a cyclist bobbed around a line of cars on the way to work yesterday morning, I stumbled across this post on one of my favorite blogs, “One Girl Trucking.” It should be required reading for everyone on two wheels. (Language warning)

Related: Authorities say a 28-year-old man in upstate New York has been charged with driving his motorcycle at nearly 200 mph on a highway in the rain.

4) THE CONNECTION

In 2005, Ian Harvey set out to row the length of Lake Superior, from Duluth to Whitefish Point Harbor in Michigan. He didn’t expect to make connections with an Ojibwe clan whose ancestors made the same journey.

The marathon, and the resulting relationship, caught the attention of an English filmmaker, whose documentary will premier in Duluth this weekend. Today’s Duluth News Tribune has the story.

5) DISAPPOINTMENT IN THE TRIP OF A LIFETIME

Not every story has a happy ending, apparently. Reggie Deal, the Wyoming man who just finished a mission to visit 30 baseball stadiums in 30 days, has had a couple of days to think about his accomplishment. In a blog post he’s concluded the local news media is frustrating to deal with:


Now as far as the news media is concerned, I now know why TV guys are so frustrating to anyone who gets interviewed. They ask the same questions, do no background work to find out the details about someone and go for a quick sound bite. The best interviews I had on this trip, a newspaper writer in Pittsburgh and two radio interviews in Toronto and Kansas City. A Houston station did a very good piece, but more on them in a moment. As far as TV goes, the sports cable networks were not hard to work with, the most difficult people were the local TV reporters, who at times acted as if I needed to jump and be on their schedule. They were forgetting that this was my trip that I had scheduled, forgetting that I did not drive a car and was at the mercy of cabs and public transit systems and schedules.

I appreciated a couple of teams scheduling interviews as a group cession so all involved could ask their questions at the same time, Minnesota and Cincinnati. But it was amazing how often details were mishandled which would confuse anyone who read various articles about my journey.

The man planned his trip as the journey of a lifetime. But for most of it, his writing suggests, he didn’t enjoy himself.

In Minnesota, by the way, there were only four reporters interested in him — two from local TV, one from FSN, and a public radio reporter.

Discussion point: What have you looked forward to for a lifetime only to be disappointed?

Bonus I: We’ll say it again: If the world was perfect, dogs would live a lot longer.

Bonus II: Aaron J. Brown notes the passing of Ken Hickman, editor and columnist of the Grand Rapids Herald-Review. In an era of a declining sense of community, it’s not a coincidence that the ability of local media to reflect — positively — on communities declined first.

Bonus III: Can you still work your way through college? (PBS)

TODAY’S QUESTION

A recent op-ed piece in the Star Tribune sparked a controversy on the Web over the local music scene and the pride Minnesotans take in it. Today’s Question: Are Minnesotans too uncritical about things Minnesotan?

WHAT WE’RE DOING

Daily Circuit (9-12 p.m.) – First hour: How changing demographics will change voting.

Second hour: David H. Freedman, author of “Wrong: Why Experts Keep Failing Us-And How to Know When Not to Trust Them.”

Third hour: Wellness programs in the workplace.

MPR News Presents (12-1 pm): Former U.S. Sen. Bill Bradley, speaking at the Commonwealth Club of California about his new book, “We Can All Do Better.”

Talk of the Nation (1-3 p.m.) – First hour: Immigration, health care, and the U.S. Supreme Court.

Second hour: New choices for amputees.

All Things Considered (3-6:30 p.m.) - Companies and government lease millions of cars and trucks every year, and they’re increasingly interested in finding the most energy-efficient vehicles for their fleets. GE opened a center in Eden Prairie intended to help them do that. MPR’s Martin Moylan will have the story.

A group of kids in Fridley have developed an anti-bullying campaign. They also hope to rewrite the school’s bullying policy in “kid speak”. MPR’s Tim Post reports.

A fire Monday has shut down the Verso paper mill in Sartell. More than 250 are employed at the plant and for now, the future of the facility is unclear. Last December 175 workers were laid off and while the plant is still Sartell’s biggest tax payer the importance of the mill has taken some setbacks. MPR’s Conrad Wilson will have that story.

  • Bob Moffitt

    Amen on dogs living longer.

    I look forward to Moylan’s piece on the GE fleet center in Eden Prairie. We have a booth at today’s Grand Opening event.

  • Jim Shapiro

    Re DISAPPOINTMENT IN THE TRIP OF A LIFETIME –

    When it was first posted on Newscut, I somehow missed the fact that Deal’s visits to 30 ballparks took place in 30 days.

    Perhaps the headline should have more accurately read, “Insane, Masochistic Blind Guy Spends a Month In Travel Hell.”

    Anyone who has ever traveled knows that spending that much time on planes and in airports and in different hotels is not going to be fun.

    Rather ironic that he rushed through an experience that was purportedly centered around the sport that is unique in it’s pastoral timelessness.

  • Kassie

    Early-onset Alzheimer’s is so scary. When my grandma was 55 she was displaying signs of it, though she wasn’t diagnosed for a few more years. She died last month after a very long battle with it. Longer than normal or expected. My mom turns 55 on Saturday. She has a 50% chance of having it too. She won’t have the genetic test, because you can’t live knowing that is your death sentence.

  • Suzanne

    Excellent post on road safety and thanks for the intro to the One Girl Trucking blog. The entry you linked to was fantastic!

    And I loved the sweet video of Coach the dog bouncing in the grass :) Long live our pups!

  • http://www.jenniophotography.com Jenni Ochsner

    So that video of the Coach dog? Totally my video and my awesome dog. Oh I am sooo excited! This is rock awesome! Thank you!

  • Bob Collins

    Coach is now NewsCut’s second-favorite dog in the world. Long live Coach!