Thursday 31 July 2008

The Long Good-Bye - A World News America Series on Alzheimer's

The Long Good-bye – Part 1: The First Instalment in a World News America Series on Alzheimer's Looks at Hope Behind New Research.

 

The old lady stared blankly, not a hint of recognition on her face.

 

Next to her on the bed sat two of her closest relatives - her daughter and grandson.

 

They hugged her, teased her, squeezed her hand: nothing.

 

They talked of hobbies, and pets, and adventures from her past: not a word.

 

Then - briefly - the haunted expression grew into a smile and both planted kisses on her pallid skin.

For Dianne Kerley and her son Mike it was the best they could hope for.

 

Fifteen years ago Dianne's 78-year-old mother Flossie (Mike's grandmother) was diagnosed with Alzheimer's disease.

 

Since then she has lost not only her memory, but the ability to look after herself, as well as the ability to walk and talk.

 

Dianne and Flossie Kerley's long struggle with Alzheimer's.

 

Traumatic deterioration

 

They say that Alzheimer's begins with forgetting your keys and ends with you forgetting what your keys are for, but it is a whole lot worse than that.

 

Before long Flossie's sense of balance and co-ordination will be compromised.

 

In the final stages of the disease so too will her ability to breathe.

 

Until then all Dianne and Mike can do is undertake a heartbreaking weekly pilgrimage to a nursing home in eastern Missouri and watch her fade away before their eyes.

 

"It was two years ago - at Thanksgiving," said Dianne, recalling the last time her mother recognised her.

 

"Ten or 12 seconds and then it was gone."

 

"She was like: 'Well hi! How are you?' and I'm like: 'Well, we sure do miss you,' and she was like: 'You do?. Then all of a sudden the fog just went over - and that was it."

 

It is difficult to imagine a slower, more agonising death.

 

Alzheimer's leaves the patient a prisoner in their own body whilst systematically eroding everything about them that makes them human.

 

What should be the golden years are marked by blank stares and tragically unrequited expressions of love.

 

My own grandmother

 

Sprightly and independent, she was like a granny from central casting - white hair, glasses, rocking chair and slippers.

 

She came to live with us shortly after my parents married and she was a hoot.

She helped out at children's tea parties, always had the best biscuits in the house, and allowed me to watch shows on her black and white TV that my mother frowned on.

 

But as the years went by, Granny started to change.

 

Not only would she say the same things, she would do the same things, time and time again.

She would list the names of everyone in the family before arriving at mine, come in to tell us something and then forget what she had come to say.

 

All the time she was becoming befuddled by tasks which once seemed second nature.

 

Slowly but surely her sharp mind and sense of fun began to fade like a tropical sunset.

 

When she lost control of her bladder my mother decided she could not cope and we put her in a home.

The first time I visited she barely recognised me.

 

A few more trips and she had lost the ability to speak.

 

Months later a nurse rang to say granny had faded away in her sleep.

 

We shed a tear then breathed a huge sigh of relief.

 

New hope

 

The fact is that even though Alzheimer's was discovered more than 100 years ago it is only in the last two decades that we have really come to know anything about it.

 

Lack of funding has a lot to do with it.

 

The US government spends roughly eight times as much on cancer research as is does researching Alzheimer's disease, and half what it spends on substance abuse.

 

Finally, though, there is some hope.

 

This week the Irish-American company Elan and the US firm Wyeth will jointly announce they are pressing ahead with the $300m (£151m) trial of a drug which could block the production of a protein called beta amyloid which many scientists believe causes Alzheimer's.

 

Present in all of us, too much beta amyloid can cause plaques to form in the brain, and those plaques feast on brain cells.

 

There is a lot at stake, not least financially. If a drug is discovered which prevents Alzheimer's half the population of the US alone could eventually end up taking it.

 

Need is great

 

Never has the need been greater: as the first baby boomers turn 60 the fear is the health care system could be overwhelmed by what some are predicting could be an epidemic of Alzheimer's disease.

 

It costs $50,000 a year just to keep Flossie in a nursing home.

 

Back in Missouri, Mike and Dianne are bidding her farewell: "There's that pretty smile, sleep tight OK?"

 

Flossie sits perfectly still - beyond hooded eyelids brain cells are dying.

 

As she reaches the hallway Dianne stifles a tear.

 

Hers is the heart-rending tragedy of the long goodbye.

 

THE LONG GOOD-BYE – PART 2:  The Second Instalment in a World News America Series On Alzheimer's Looks at Early Onset of The Disease.

 

Kris Bakowsk: 'I don't know if there will be a cure for me in my lifetime'

 

"If my son gets afflicted, I want there to be a cure for him."

 

The son in question is Kris Bakowski's only child Alan, who's about to be married and begin work at a Washington law firm.

 

Life is good for Alan, from almost every perspective.

 

But his 52-year-old mother Kris, diagnosed with early onset Alzheimer's disease six years ago, is frightened Alan may succumb to the terminal disease as well.

 

The younger the age at which the parent develops the disorder, scientists believe, the greater the risk to the children.

 

It is a startling but little known fact about the disease; one that has special resonance with Bakowski.

"I don't know if there will be a cure for me in my lifetime," she says. "But, I am working as hard as I can to help."

 

Searching for help

 

Bakowski spends the bulk of her time speaking out - at Alzheimer-focused conferences around the world, and to members of Congress on Capitol Hill.

 

What needs addressing most urgently, according to Bakowski, is the lack of an adequate diagnostic tool for detecting the disease, which in turn prevents some people from getting the help they need.

 

She discusses this, and her own story, on her blog, "Creating Memories".

 

Her diagnosis began with unusual behaviour, including memory loss that got increasingly worse.

 

It took six months of tests before it was determined she had Alzheimer's disease.

 

What followed was a mid-life nightmare.

 

She lost her job as a theatre director, several friends faded from her orbit and she went nearly four years without social security benefits.

 

Today, in her home of Athens, Georgia, Kris Bakowski has her job back - after a year of lawsuits - and her benefits.

 

But the real - and long - fight continues.

 

You can watch World News America's 'The Long Goodbye' Series on Alzheimer's on BBC America and BBC World News weeknights at 1900 ET/0000 BST (for viewers outside the UK only).

 

(Source:  http://news.bbc.co.uk/2/hi/health/7525228.stm  /  http://news.bbc.co.uk/2/hi/americas/7532226.stm)



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