Saturday, September 21, 2013

Dad's 84th - or woulda been



Today is Dad’s 84th birthday - or would have been - had Alzheimer’s Disease (AD) not stolen first his mind, then body. Dad’s last years were an agonizingly slow, unfolding tragedy. I wish it on no one. On his birthday, I find myself reflecting upon my first year of work in the Memory Clinic.

What follows is a poem penned the year before his death.
Who says, “A watched pot never boils?”
Life on the back burner, 
Father - Simmering to a boil.

He seethes silently, Simmering in his seat
Glaring at the TV following an outburst.
 “I know what I see!” he spit, “Stop lying to me!”

He is determined to be angry; 
Predestined to be hurtful… even hateful.
Possessed by inner demons, His cup-half-empty theology amplified.

When neurons unhinge and little is familiar
The world is threatening
And family is enemy.

Calm seems vacant, apathetic… waiting.
Anger seems present and passionate,
The spark of synaptic connection… ALIVE.

Reaction is the locked step that enlivens, imprisons,
The doh-see-doh of struggle.
Difficult for me to BE no preference and no reaction.
I expect a night of little sleep.

Sometimes, newly diagnosed patients threaten suicide. Dad frequently threatened suicide. Then he threatened Mom, brandishing a long kitchen knife and she hid them thereafter. From my perspective, suicide is not a completely irrational thought, rather a lucid mind seeking solution for a terrifying and terminal diagnosis. They fear not for themselves but for their families - and rightly so. As a healthcare provider, I understand and suicidal ideation is something against which I must act.

Did you know that AD is definitively diagnosed at autopsy? So how do we make the diagnosis in the living? It is a disease diagnosed by symptoms and exclusion. What does that mean? We look for memory loss that is greater than normal in the absence of reversible or explainable causes like brain tumors, strokes, alcohol consumption, vitamin B-12 deficiency, and psychiatric disorders - all of which can affect memory and mimmic dementia. Exclusion of other causes, in the face of abnormal memory loss in the elderly, points toward a diagnosis of AD.
Other dementias include: vascular dementia (memory loss suffered after stroke) and dementia seen in the late stages of Parkinson’s disease or Multiple Sclerosis, to name just a few. The current rise in elderly dementia is primarily related to a rise in AD or vascular dementia or an almost certain combination of both.
New amyloid scans might help differentiate early AD from other dementias but as none are curable, early diagnosis and differentiation is academic; prevention better medicine than the bitter pill of early diagnosis. You know the old adage: an ounce of prevention...

What we know. An estimated 5.2 million people in the US are living with a diagnosis of AD. At this point, few of us remain untouched by the disease. Someone is diagnosed every 68-seconds. (And the tide of baby-boomers with dementia has barely begun.) AD is the sixth leading cause of death in the US. One in three senior dies with Alzheimer’s or another dementia. In 2012, 15.4 million family/friends provided 17.5 BILLION hours of unpaid care to those with dementia. (Statistics from Alz.org). The impact to family dynamics and relationships is staggering.

Factors for increased risk of developing dementia? The greatest known risk factor is age. We are witnessing a wave of dementia as the ranks of the elderly swell. While actuarial tables show the average lifespan in the US has increased only 5-7 years since 1900, in that same interval the population has more than quadrupled; we are witnessing the tidal surge of sheer numbers. It stands to reason, the body is organic, its parts wear out and decompose. When the body fails, we call it chronic disease. When the mind fails, its called dementia. Pick your poison. 
Is there evidence for dementia historically? Yes, migratory tribes left people behind and Shakespeare wrote of it in King Lear.
Family history - those with afflicted nuclear family members (mother, father, sibling, child) are more likely to develop AD. This is not pre-destined however, a combination of family history and environmental factors are thought to be at play.
What about genetics and heredity? Genes coding three proteins: amyloid precursor protein (APP), presenilin-1 (PS-1) and presenilin-2 (PS-2) directly cause “Familial AD”. This “early onset” AD is seen through multiple generations, as early as age 30 and seldom later than age 60.  This variation has been found in only “a few hundred extended families worldwide.” 

What does that mean? It means that most of us are NOT dealing with a familial (genetic) variant but the combination of family history and environmental factors - which are impacted by lifestyle choices. My Dad had AD. Am I worried? Yes. He was diagnosed late in life, as were his sister, my maternal grandmother, aunt and uncle. Yikes - both sides of the family LB? Yes. But all were diagnosed late in life. Most were lifelong smokers, all were carnivores without regular exercise. Therefore, methinks I have some sway over destiny - I can live a “brain healthy” lifestyle and exert favorable pressure upon the complex interactions of family history and modifiable risk factors.

Oh Gawd - are we back to diet and exercise AGAIN? Yes indeedy we are. Sorry.

Risk factors over which we have sway:
  1. Head trauma - there seems to be strong link between repeated head trauma and dementia (think boxers, football and soccer players). This group is high profile and accounts for a tiny percentage of the afflicted. Wear a helmet and protect yer noggin from falls at home. (Consider removing throw/area rugs and clutter upon which one can trip.)
  2. Stay socially connected and intellectually active. Seniors who are socially isolated and disconnected seem to be more at risk for disease development. Its why I constantly tout that I will return to Hawaii upon retirement. People like me, alone and removed from family, don’t do well. I get it. The purchase of an island-bound-one-way-ticket looms large in my future. Look at your relationships - mend them and form new ones. Learn the skills required to maintain long, nurturing and healthy relationships. These are learned skills and we are never too old to learn this new trick. It may be the most rewarding trick EVER. 
  3. Intellectual activity - musicians seem magically spared. Mind games improve cognitive ability be it Sudoko or the NY Times crossword puzzle. Watching TV is a brain drain. Limit your time in front of the tube and balance it with equal parts of physical activity. Consider something drastic - lose your TV. I don’t have one and my life is better for it. I read more, I write more, I exercise more and I interact with those who bring life.
  4. Heart - Head connection - Did you know that with each pump, your heart first sends blood to itself and then 20-25% to the brain? It stands to reason that what is good for the heart is good for the brain. There is a plethora of heart research. Run with it! People with chronic disease have more dementia. Most of our chronic diseases (the top five US killers) are REVERSIBLE. Yes - reversible.
  • Diet: heart healthy = brain healthy. A Mediterranean diet (fish, legumes, whole grains, nuts, fruits and veggies) has been shown to improve cognition in those with mild memory loss. There are populations with no, or very low rates of dementia and heart disease. They are vegetarian. Eliminate red meat; start by reducing intake to twice/month. Increase vegetables, fruit, salad to 50% of each meal.
  • Exercise daily: yes, MOVE - every... single... day. Exercise is definitely cardio-protective and likely to be brain protective as well. But... but my knees hurt. Uh-huh. Chair Dancing is but one of many chair workouts. But... but my back hurts. Uh-huh. Go walk in a pool. But... but... my feet hurt. Uh-huh. So? Do one of the two workouts mentioned above. Try a stationary bike. Don’t let your big, fat BUT keep you stuck!
  • No way around this one - STOP SMOKING.
That’s what we know. Its not much and its a place to start. If you’ve read my blog for any length of time, you know I count myself amongst the average. I never exclude self from statistics. The statistics are that only 10% die in their sleep, 40% die of a chronic illness. The remaining 50% will die with dementia and frailty. At age 85, 50% of us will suffer with AD.
I come from a long lived family and intend to live well beyond 85. So when I look at the things I can modify, I modify. I never want this diagnosis - for outside of pediatric terminal illness - I don’t think there is one more devastating to both patient and family. Everything about who we are resides between our ears. When that becomes unhinged, we are reduced to the primal animal who lives within - and I don’t use the term animal lightly.
What are the odds? 50%. I take this statistic seriously. You?

"People do not decide their futures, they decide their habits and their habits decide their futures."  ~ Frederick M. Alexander ~ Like I said, pick your poison.

The Walk to END Alzheimer’s occurs nationwide on October 5th. Our entire Memory Clinic is walking. Join us! Go to Alz.org and register in Sacramento with the KP Mind Joggers or walk in your city. The national Heart Walk is tomorrow. Do that too - it will count toward daily movement.

8 comments:

  1. Excellent post, Lorin--I'm going to share it. My mother (a witty, bright woman who never missed the NYT crossword puzzle) succombed to this cruel disease. Prevention (and education to jumpstart prevention) is key! Thank you.

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  2. Mahalo YOU my dear friend. And Mahalo for reading and sharing. The goodness you bring to the world is inspiring.

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  3. Hi Lorin, These statistics are staggering. Thank you for sharing your research and thoughts on this disease. Certainly knowledge is ammunition. But of course acting on that knowledge is the key to staying healthy. Thank you for planting seeds- you inspire me!
    PS What a wonderful tribute to your Dad to take on this cause as you have done.

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    1. Mahalo to you Trish. You and EJ are part of my prevention plan!

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  4. Excellent, well-written post, my friend. Every time I forget where I put my keys, I gasp "Is this the end?" Thanks for the tips. No AD in my family, but not taking anything for granted.

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    1. Mahalo Patricia. Never too late for good food and lots of exercise. Sheesh, seems we are always back to that!

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  5. Wonderful post Lorin and walking in the annual Memory Walk is a great way to honor your Father. You will feel close to him on the 5th :-)

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    1. Mahalo Laurel. At the Alz Walk they had these whirly-twirly flowers on which to write names. Purple for those who have passed and yellow for those suffering now. I couldn't... and then I did at the last moment. Now they are whirling and twirling in my front yard.

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