Sunday, April 26, 2009

A Huntington's warrior lays down his shield

My father, who is 81 and ailing, was one of those unsung Huntington’s disease caregivers who quietly dedicate themselves to a spouse.

I think of him as a Huntington’s disease warrior.

No matter how bad my mother’s HD symptoms got, he met the challenge every day. He cared for her from the early 1990s until she went into a nursing home in the late summer of 2005, and he visited her at the home every day and fed her lunch until she breathed her last breath on February 13, 2006.

Complete dedication

In retrospect, my father might have learned more about HD and found many other ways to help my mother, but as a companion and caregiver in the home he was completely dedicated. As he watched HD inexorably destroy her body and mind, he gradually took over all the household responsibilities and stoically and lovingly saw to all of her needs. He got her up in the morning, dressed and groomed her, put on her lipstick, prepared three meals and spoon-fed her, assisted her in the bathroom, and bathed her.

My father told me once that she was the only woman he had ever slept with. Although he could be crotchety and domineering at times – what men in his generation weren’t? – he showed her unquestioning love and loyalty.

Whenever he went out, he took her along, no matter how long it might take to get her ready or how difficult it might be to get her in and out of the car. One image forever burned into my memory is of the two of them leaving a restaurant that had a heavy entrance door. As she shuffled her way through, with him trying to guide both her body and the door, she lost her balance. Her body swiveled and then flopped to the ground, thumping on its side like a wrestler knocked to the mat. In the final months, she was in a wheelchair.

My mother was only 68. Had it not been for HD, she might have lived well into her eighties, as had both her mother and maternal grandmother. And she could have helped care for my father, who was ten years older.

Signs of decline

In the last few years before her death, my father started to show some of the usual cognitive decline that comes with aging such as forgetfulness and confusion, but he kept both himself and my mother going.

Not long after she died, however, he told me, “It won’t be long before I follow your mother.”

My father had lost his reason for living. Last year, as his decline accelerated, he moved into an assisted living facility (click here to read my entry about the process).

Rapid descent

Since then, he has gone downhill even more rapidly. One day in late February he walked out of his room looking for my mother. The head caregiver had to take him aside for a long talk and explain patiently that his wife had died.

In March I flew to my hometown to spend a few days with him at the facility. He was in a so-called “memory care” unit for people with severe cognitive loss. He cannot leave the unit without a family member or caregiver.

It took my father a while to grasp fully that I was his son. He now has no memory of my mother’s death from Huntington’s disease. In fact, he no longer knows what HD is. Perhaps that is a blessing. Walking just a few yards tires him. Once it took him several minutes to lift himself up from the couch. I had to coax him to eat and drink.

Glimpse into the future

As I spent time with my father and tried to improve his care, I was reminded painfully of my mother’s demise. And I got a probable glimpse into my own future in a care facility if an effective treatment or cure for HD is not found soon. I tested positive for the HD genetic defect in 1999, and I am now at the very age when my mother’s symptoms started.

On April 18 my father became severely dehydrated and was admitted to a hospital. When I called on the phone, he could barely speak. On April 23 he was transferred to a rehabilitation facility, where physical, speech, and occupational therapists will attempt to revive his health to the point where he can return to the assisted living home.

I had a difficult time this past week thinking of my father. For a couple of nights I slept poorly because while I thought his death might be imminent.

A stroke and painful transitions

I’ve thought about how lonely it must be for my father in the rehab facility. The transitions have been many and brusque: from losing his wife to losing his car and home to losing now the last semblance of a home life, with yet another group of strangers in charge of his care. The rehab nurse told me on April 24 that he had trouble remembering his name and mentioned that his doctors had listed a stroke as a possible diagnosis.

Today my cousin and uncle visited my father and were told again that he had had a stroke. My cousin wrote in an e-mail: “I fed him a cup of ice cream. No way he could have fed himself.”

On the night of the 24th I opened several e-mails from the real estate agent hired to sell his condo so that he has sufficient funds to pay the very expensive monthly fee at the assisted living. In one of the messages, I clicked on a link that took me to a virtual tour of the one-floor condo, where my parents had moved when my mother’s symptoms made it too risky for her to continue in the split-level home where I grew up.

The video camera zooms in and out as it travels through each room of the condo. I can see the bathroom where they spent so much time together struggling to overcome what HD had done to my mother’s mind and body. I see the bedroom where he slept alone, the kitchen counter where he fed her, the family room where he spent countless hours reading the paper, watching TV, and talking to her as she sat silent and motionless in a chair.

I also see the bed where my mother slept – the bed where HD ravaged her brain. Whenever I visited my dad after my mother’s death, he offered that bed to me. I shuddered at the idea of lying down in the same spot where my mother slowly lost the last of her cognitive abilities. I could not bear to think that I might become like her. I refused to sleep there.

Watching the video was an eerie and completely unexpected experience. Nobody is in the picture, and some of the furniture is gone. Everything is tidy.

The cycle of life continues. The old Huntington’s disease warrior who fought so many battles for his beloved is now laying down his shield.

Sunday, April 19, 2009

Our economic comeback and the cure industry

As the unemployment lines grow and our economic crisis deepens, America’s leadership of the world comes into question. Can a country that literally gambled on its financial future make a comeback?

Bankers, business people, and politicians must honestly correct the mistakes that took us to the brink of financial collapse.

But America also needs to plan for the future in a way that renews our leadership and inspires confidence.

President Barack Obama has spoken frequently of rebuilding the nation’s infrastructure and developing green technologies that make us less dependent on oil and other pollutants. The government has already committed massive sums to these goals.

The president has also identified health care reform as essential for our future. There is huge potential in this area, but in order to realize it, but we need to look at health care in a new way.

From innovation to obesity

For a long time, we Americans were a nation of innovators. From people who tinkered in the garage at night to the great inventors and scientists working in the world’s best laboratories, we created a cornucopia of new products and solved a myriad of problems. Flash of Genius, a movie released in 2008, captures the spirit of individual creativity still present in the 1950s and 1960s. Americans always had a “can do” attitude. No challenge seemed insurmountable.

But as the also film shows, large corporations helped snuff out that spirit.

And our wealth went to our heads, making us complacent, arrogant, and, in many cases, literally obese. Like the people in the animated film Wall-E, which I watched recently with my eight-year-old daughter, we have moved into an oasis built on ignorance and a total disconnect from reality.

Instead of innovating and producing, we became a service economy dominated by the financial sector. We have been living off the fat of the land.

In a world where so much of our work has been outsourced to China, India, and elsewhere, what will there be left for America to do? Will we become, as one influential congressman once sarcastically declared, a nation where everybody just delivers pizza to one another? How can we possibly lead the world again with vigor and vision?

A new industry

One way is to use our ingenuity to create new products that the whole world will want to buy. In the past we did this with cars, airplanes, computers, and a whole assortment of other inventions and goods that people everywhere wanted.

This new array of “products” should be treatments and cures for diseases and the procedures and medications that go along with them.

While much of the debate about our health care system promises to follow the old paradigm of public versus private, American versus European, we need to expand our vision of health care to include a cure industry. In this broader view health care is not a drain on society, as it is currently seen, but the motor that generates new wealth.

Thus the president and our leaders need to expand our vision of health care beyond the idea of simply controlling costs.

Seeking the end of disease

America’s call to action today should focus on the elimination of disease.

America proclaimed a war on poverty and another one against drugs. What we need now is a mission to find treatments and cures for all diseases.

Strangely, no leader in more than a generation has stepped forth to declare a campaign against disease, even when we had federal budget surpluses and a booming economy in the 1990s.

To carry out this mission, we need once again the same "can do" spirit that brought us the Marshall Plan, the construction of the Interstate Highway System, and the Apollo space project. And we need a new generation of tinkerers and dreamers to provide the solutions.

Our leaders need to help create this vision by focusing on what has always been America’s great plan: the pursuit of a quality life for all people.

Leadership and accountability

Sadly, in our recent history the presidency has meant a flight from leadership rather than the willingness to assume it bravely. President Bill Clinton squandered the opportunities of the post-Cold War peace dividend and, instead of resigning in the wake of the Monica Lewinsky affair, stayed on and devalued the office. Instead of calling Americans to volunteer for the armed forces or other new initiatives after the 9/11 attacks, President George W. Bush sheepishly asked Americans to shop and take a vacation.

Focused as they are on the economy, President Obama and our legislators should boldly announce a plan to eradicate diseases, from AIDS to Huntington’s. Our university laboratories, biotech companies, and pharmaceutical industry should collaborate to invent new treatments and drugs that will form the next generation of products “made in America” and desired around the world.

Educators and government officials at all levels must rekindle our youths’ interest in science, math, and engineering, so that a new generation of Americans can take charge of the cure industry and pursue many other worthy goals in the fields of science and technology.

Public-private partnership will be crucial in this initiative, as it was in so many of the great achievements of our past. This will require greater accountability and productivity on both the part of government and industry and especially of the National Institutes of Health and the large pharmaceutical companies, both of which have suffered a loss of prestige in recent years. All the players involved need to be more agile and innovative.

This new mission will require us to retool America economically and morally. And, instead of borrowing our way out of our economic crisis, it provides a way to create our way out.

Saturday, April 11, 2009

A holiday message: hope for the forsaken of Huntington’s

Growing up Catholic, I was always both bewildered and impressed by Jesus’s words on the cross on Good Friday: “My God, my God, why have you forsaken me?”

I wondered: why would God the Father – Jesus’s own father! – abandon his son? At that moment, dying for all of humankind, Jesus hung on the cross in utter loneliness.

As I have contemplated Passover, Holy Week, and Easter in light of my gene-positive status for Huntington’s, it struck me that HD patients and their caregivers must often feel just as forsaken in their daily struggles against this condition that destroys the brain.

Bearing burdens

After writing about my family’s decision to borrow money for us to build and enjoy a swimming pool while I am still healthy (click here to read the entry), I received an e-mail from a caregiver. Her husband died young of HD, and her adult daughter now has the disease.

“I am wide awake at 3:26 a.m.,” she wrote in telling me of her many burdens and reminding me of the many nights my wife has lost sleep in worrying about my health. She continued, “I don’t think there is anything as ugly as HD. Satan did a good job creating this one! If I could only stop, for just a day.” But she didn’t give up and has started a Huntington’s disease support group.

This past week I also met a brave woman, Missy, through (the Social Support Network of Huntington’s Disease). Her late husband had been diagnosed with HD when she was eight weeks pregnant with their second child.

Men usually pass on HD in a far worse form than women, and this also results in their children getting the disease much earlier. The father died in November 2007. Only two months later, the couple’s oldest child, Jordan, was diagnosed with juvenile Huntington’s disease. Now 13, Jordan already experiences the involuntary movements, known as chorea, that ultimately stop HD people from working and walking.

I was shocked to read that Jordan has 73 CAG repeats. (Everybody has the huntingtin gene, but the repeats of the CAG trinucleotide are normally no higher than 30.) I have 40 and am on the cusp of what is defined as HD. The number 73 is phenomenally high. In general, the higher the number of repeats, the earlier onset will occur and the more severe the disease will become. That’s why Jordan is already so deeply affected.

Here is how Missy describes her daughter’s symptoms on her page at “twitching, choking, decline in school work, abnormal gait, decline in speech, some falling, mild depression, some memory loss. Dementia is starting to come into play.”

Missy urged us to get our pool and enjoy our time together. She told me how Jordan had an easier time with mobility when she entered a pool in Florida during a trip away from the family’s home state of Wyoming.

I was deeply moved by the image of a young person being struck down by HD just as she was beginning the transition to full awareness about her body, her surroundings, and her life. I thought of her enjoying the warm water of the pool despite the curse of Huntington’s.

Feeling abandoned

And I wondered how forsaken she must sometimes feel. Where was the God of the Passover who spared the first-born of the Israelites while ravaging the households of the sinful Egyptians?

On Good Friday I listened to one friend tell of another’s struggle to deal with a recent and rapid onset of multiple sclerosis. Like HD, MS is a disease of the central nervous system. Our friend is having spasticity (impairment of the muscles). She is only in her forties but could be relying on a wheelchair in as few as seven years.

Thinking of my own mother’s death because of HD three years ago, I could not bear to listen to our friend’s plight and had to turn away. How long will it be before I start to show symptoms and lose the ability to walk, talk, swallow, and think?

I too felt forsaken.

But, according to the Bible, God delivered the Israelites to the Promised Land.

And less than three days after Christ died on the cross, He rose from the dead.

Finding hope

The Passover and Christ’s Resurrection are two of the most unbelievable stories ever told. Through the centuries, these stories have motivated billions of believers in numerous religious traditions. Today many people still believe in the literal intervention of God on behalf of the Israelites and in the Resurrection. Others are indifferent or discount these stories as superstition.

They are undeniably stories of salvation that all people can relate to. An overburdened caregiver’s attention to the sick is akin to the men carrying the dead Jesus to the tomb. The yearning for a cure for a girl with juvenile Huntington’s is like the hope of the Israelites in Egypt.

What human being has not struggled with the inevitability of death? Families struck with Huntington’s feel it all too soon and all too poignantly. But, as Jesus exhorted people to do, Huntington’s families take up their cross and move on with life.

The Promised Land and the Resurrection are their hope – a land and an existence enjoyed with the fullness of life and without twitching, choking, depression, or dementia.

The prophets and Jesus asked their followers to believe in the possibility of such a life. In effect, they asked people to believe in the seemingly impossible. Today, scientists are making immense strides in finding treatments and perhaps even a cure for a disease that not so long ago seemed incurable. Like the faithful of the past, Huntington’s disease families can persevere if they’re willing to believe in the possibility of the cure and dedicate themselves – no matter how modestly – to the cause.

Saturday, April 04, 2009

In a time of crisis, the best investment of all

The economic crisis threatens to end our leadership of the world’s financial system and erode our standard of living. We have borrowed too much on our future, leading other nations to doubt the value of the dollar and sapping resources from investments that could reinvigorate the economy. The export of jobs and factories to China and other countries has weakened our ability to bounce back. The state of California is broke, and the extra taxes of all kinds we’re already paying here won’t put more than a dent in the deficit.

It’s a tough time to raise money to cure a disease – especially a cruel and fatal one such as Huntington’s disease, where not a single treatment is available for attacking the root causes.

It’s an especially harrowing time for me as I approach the tenth anniversary of my positive test for Huntington’s and the age at which my mother, who died of HD in 2006, began to show symptoms. Like most other Americans, my wife and I saw the value of our retirement savings plunge by 30 to 50 percent. For the first time in our careers we will not get a raise.

I worry a lot about what will happen if I become symptomatic and lose my job, forcing my wife to carry the full burden of supporting the household and saving for our eight-year-old daughter’s college education.

Taking on debt

So what did we do last month? We responded the American way and took on more debt! With the government pushing mortgage rates to historic lows, we decided to refinance ours at a very attractive 4.375 percent – and took out $75,000 to build a swimming pool and fix up the house.

We easily qualified for the new loan because we prudently stayed away from extra borrowing during the financial bubble. In fact, we’ve always played it very conservatively with our money because of my at-risk status.

But I’m scared about this new path we’re taking. Sometimes I think we are just as crazy as our financially irresponsible leaders in assuming this new debt at the time that my HD risk grows exponentially. In HD gene-positive status means that a person definitely develops the disease.

My wife denies it, but I believe that she wants a pool to substitute for the second child we did not have. Our daughter tested negative for HD while still in the womb, and the prospects of a second round of prenatal (or pre-implantation) testing, coupled with the stresses of my own at-risk situation, kept us from going through another pregnancy.

My wife sees the pool in the back yard, including a spa, as the new focal point for family relaxation and a place to enjoy with friends. Most of all she thinks it will provide fun, exercise, and unforgettable memories for our daughter.

In one of those many episodes of delicate negotiation that make up the everyday reality of marriage, I finally agreed to the pool. (In the deal I am supposed to get some custom bookshelves for my home office to replace the wobbly ones purchased many years ago at a discount outlet.) Like so many of our decisions, we ultimately agreed because we want our daughter to grow up with as many opportunities as possible. She just loves playing in a pool!

As I write these words I can see her laughing and splashing in the water as I stand at the grill preparing dinner and my wife sits in the spa with a glass of wine. It’s the kind of picture I use to help me escape reality.

Enjoying the moment

But the daily reminder of my gene-positive status and the memory my mother’s death jolt me into the reality of mortality.

Life really is short, and every moment that passes is unrecoverable. I do want my wife and daughter to enjoy that pool to the fullest. If we just keep waiting for the “right moment,” it could be too late for all of us. My daughter will have grown up, and perhaps I will have become like my mother – speechless and confined to a wheelchair.

I also view the pool as a place for me to unwind. Those living at risk for Huntington’s are bolstered when stress is lowered. The opportunity to swim more often will also be therapeutic, as we want to install an “endless pool,” an underwater jet spray that creates a current against which to stroke.

Despite Huntington’s and the bad economic news, life must go on. I’m at risk for HD, and that means our family inevitably ends up taking more risks in other realms of life.

I am striving to live out one of the grand lessons that being at risk has taught me. There are things more important than career and even more important than taking part in the monumental effort to find treatments and a cure for HD. They are the moments I can love my family and leave my daughter with the warm feeling of togetherness and being cared for.

That’s the best investment of all.