Living at risk for Huntington’s disease often leaves me deeply anguished. My mother was diagnosed with HD in 1995, and I tested positive in 1999. For 15 long years I have worried about whether I will repeat her hellish experience of losing the ability to walk, talk, think, and swallow. Everybody with the HD gene eventually develops the disease, which is fatal. My mother died in 2006 at the age of 68. I'm 50 now, and time is closing in.
I’ve learned to cope in many ways. I’ve adapted emotionally – so far – to the idea of getting HD, and I’ve balanced my fear of HD with the demands, strategies, and joys of life (work, insurance, and family, for instance). A good part of the past year I spent preparing for a month-long cross-country car trip with my wife and daughter – our "miracle child," who tested negative for HD in the womb – in order to enjoy our time together before I develop symptoms. We had a great time (click here to read more).
The importance of exercise
Exercise is another way of coping. Perhaps it even delays the onset of symptoms.
One of my HD heroes is Bryan Medrano, a triathlete and the 2004 “Person of the Year” of the Huntington’s Disease Society of America (HDSA). I met Bryan several years ago when he was in San Diego for a kickoff party in honor of him and three other Californians who biked across the country in one just one week in order to raise research funds. I learned that Bryan was gene-positive. I admired the way he trained to stave off symptoms and to raise awareness about HD.
Next to Bryan I’ve been a couch potato. I get in 30 minutes of focused daily exercise. I usually take a brisk two-mile walk. For a while I took hour-long bike rides up and down the hills of our San Diego neighborhood. For about a year I also worked out once a week on the weight machines at the nearby YMCA. For a few years I also worked out on an elliptical machine in our living room. I also spend 15-30 minutes per day stretching.
I know I need to do more. Dr. LaVonne Goodman, the founder of Huntington’s Disease Drug Works, recommended that I put in an hour of aerobic exercise seven days a week. I’ll admit, though, that sometimes I’m lazy or too busy, so I rarely get beyond 45 minutes.
The Obama stimulus pool
Over the past year I’ve rediscovered swimming.
Thanks to my wife’s persistence, in 2009 we built a swimming pool in our back yard. I call it “the Obama stimulus pool,” because, thanks to President Barack Obama’s efforts early on to lower interest rates and get the economy going, we were able to refinance our home with an interest rate of just 4.375 percent and take out $75,000 for the pool and related home items such as solar heating and decking.
I like to tell friends that when the history of the recovery from our current recession is someday written, economists will identify our pool project as the turning point.
My wife mainly wanted the pool for get-togethers with friends and our daughter’s play dates. My wife reasoned that it was better to have our daughter within view than off somewhere else as she heads into the challenging teen years. While the kids play, we can read or work on our laptops or join in the fun.
Laps in the back yard
I investigated another very practical benefit: how to set up the pool for the best workout possible.
Our yard was too small for a lap pool. So I started to research alternatives such as a swim tether (holding the swimmer in place with a line) and swim jets (a stream of bubbles). I concluded that neither would give me the kind of challenging, natural workout I wanted.
Years ago I had also heard of a company called Endless Pools. I received some of their promotional DVDs in the mail, but the estimated price of around $20,000 seemed too much for a small pool that could be used only for swimming laps in place.
More recently, however, the company developed a product called Fastlane, a motor that can be installed in a new or existing pool.
A 52-speed motor
From my research I learned that the Fastlane did the best job of recreating the actual conditions of swimming. The Fastlane created a current in the pool, not bothersome, dispersing bubbles. The company arranged for me to try out one of its devices at another customer’s home. This gentleman, a Masters swimmer, and his wife graciously allowed my daughter and me to swim in their pool with the Fastlane.
The two horsepower motor operates at 52 speeds (!), allowing for a wide range of swimming abilities.
I was hooked! So the additional $5,000 for the device and installation by our pool contractor has been worth it. (Click on the 'play' button below to watch a video of me with the Fastlane.)
My relationship with water
The physical benefits of swimming are well-known. It’s a great aerobic exercise that involves the whole body and doesn't stress joints as with running or require an uncomfortable position (for me, at least) as with bicycle riding.
Life emerged from water, and to return to water helps me reconnect with nature. The water envelops me as if to protect, and at the same time I must work against it to keep up with the current.
I have an especially complex relationship with swimming pools. When I was about four, my mother took me and my little sister to the pool in our apartment complex. I was floating around in a circular rescue tube. Suddenly I flipped over and was upside down in the water. I didn’t know how to swim, and I started thrashing about in the struggle to right myself.
What’s worse, the lifeguard wasn’t paying attention.
Somehow, I came back up on my own.
I had swallowed some water and was coughing and crying as I came out of the pool. I kneeled down and hid between my mother’s legs and under the towel she had draped over her knees.
I didn’t develop a phobia for water or pools, but I do frequently remember the sensation of helplessness and the subsequent safety I felt under my mom’s towel.
Swimming and HD
Recently I’ve thought even more about this incident because of how helpless my own mother became when struck with Huntington’s disease.
I now return to the water to seek strength against her attacker and mine. Getting in shape, working the heart and muscles, bathing the brain with oxygen and its protective elements – these are my goals when I get into the water.
The Fastlane is my friend.
As its motor hums and relentlessly pushes water at me, I work out my frustrations. Swimming helps me to put the relatively minor but often irksome problems of daily life into perspective.
And rather than fight with people I know who live in denial of HD or fail to understand the need to draw our community closer, I think of accelerating my pace so that my fingertips can reach the edge of the Fastlane. Anger becomes energy, and sadness becomes exhaustion.
When the anguish is worst, swimming makes me feel alive and vital, knowing that for the moment I am still okay and without symptoms.
On those special days the thrill of the swim and the flow of oxygen bring me to a state of exhilaration and optimism about my work as an HDSA activist and the collective search for treatments and a cure.
The Fastlane and I don’t ever talk, but together we’re building hope.
Tuesday, August 31, 2010
Thursday, August 05, 2010
Traveling across America, togetherness and memories
Living gene-positive for Huntington’s disease has taught me to value each and every moment of life, from the most humdrum to the most exhilarating.
Like so many people in my position, I have planned for the worst yet tried to live as if it will never happen.
I know that I could very soon follow in the footsteps of my mother, who was reduced by HD to a mere shadow of herself and died in 2006.
But I’ve tried to pack in as much life as possible.
Seizing the moment
Ever since testing positive for HD in 1999 and taking part in the birth of our HD-free daughter in 2000, I have worried deeply about whether I will see her grow up, graduate from college, and set out on her own life of work and love.
I have been blessed. Whereas my mother probably had the early psychiatric symptoms of HD in her late 40s, I reached my 50th birthday apparently free of the classic symptoms of HD. Still, all the scientific evidence suggests that the genetic defect is already attacking my brain and perhaps causing subtle, almost imperceptible symptoms.
On June 27, the day after my daughter’s tenth birthday, I seized the moment and embarked with my family on a month-long vacation. I wanted to take advantage of my good health by bringing our family closer together and creating lifelong memories for our daughter.
The force of nature
In this day and age of plane travel, we toured America coast to coast by car, just as my parents used to do with my family in the 1960s and early 1970s. (I didn’t ride on a plane until age 18, but my daughter had already flown to Brazil before she turned one!) From San Diego we drove to the Excalibur in Las Vegas, spent a night in Salt Lake City, and then headed to Yellowstone National Park.
At Yellowstone we experienced the beautiful and haunting power of nature within the first few hours. Driving home at dusk after watching the Old Faithful geyser, we saw a grizzly bear crossing a river near the road.
A baby black bear near our car on our last day at Yellowstone (photo by Gene Veritas)
Moments later, driving back to our hotel in West Yellowstone, Montana, flashes of lightning lit up the western sky. It started to rain hard, and then a storm of hail forced us to stop on the shoulder. We feared that our windshield might crack. The car thermometer plummeted from 70 to 45 degrees in just a few minutes.
Once the rain cleared, my daughter couldn’t wait to return to the hotel to write down in her trip journal the assault of nature she had just experienced.
Touring a diverse land
It set the tone for the rest of the trip – a symbol of the vastness and geographical and cultural diversity of our great country.
After Yellowstone we ate trout caught by my daughter and Huntington’s Disease Society of America (HDSA) national board member Rob Millum at his pond in Buffalo, Wyoming; witnessed the majesty of Mount Rushmore, the Crazy Horse Memorial, and Wind Cave National Park in South Dakota; saw cheese-making at Decatur Dairy in Brodhead, Wisconsin; visited Notre Dame and Yale, two of America’s leading universities; spent several relaxing days at a college friend’s home on Nantucket; ate coal oven pizza in Greenwich Village with another college friend; and viewed the Liberty Bell and Independence Hall in Philadelphia.
Rob Millum expertly caught, cleaned, and grilled trout (photo by Gene Veritas).
We also saw the spectacular museums and public buildings and monuments of our nation’s capital; experienced the wisdom and ingenuity of Thomas Jefferson’s Monticello in Virginia; learned, in a visit to Memphis, about the deep impact on our land of Elvis Presley and Martin Luther King Junior; strolled through the artful town of Santa Fe, New Mexico; visited the site of the construction of the first nuclear bomb at nearby Los Alamos; and, as a grand finale, took in the Grand Canyon.
Along the way we enjoyed many dishes new to both my daughter and my wife, who is Brazilian: Wyoming buffalo meat, New Haven pizza, Philly cheese steaks, Memphis barbecue, and New Mexican cuisine.
Mount Rushmore the night of July 4 (photo by Gene Veritas)
During much of the trip we renewed ties with old friends and family members who graciously opened their doors and cooked us wonderful meals, a welcome break from hotels and the fast food we ate during 500-mile days on the highway.
A break from HD
We logged 8,300 miles in 32 days. The pace was hectic but exhilarating.
Throughout most of the trip I simply forgot about Huntington’s disease. As a fellow HDSA-San Diego board member put it, I deserved this vacation! From late 2008, when we began revamping our chapter website, until this past June I have blogged a couple times per month, put out several chapter e-newsletters, attended the CHDI (unofficially known as the Cure Huntington’s Disease Initiative) conference in Palm Springs, and worked in a range of other chapter activities.
In the midst of all this, in September 2009, my father, the Huntington’s disease warrior who cared for my mother for fifteen 15 years, died just a few days before his 82nd birthday.
For those 32 days I barely glanced at e-mail.
A joyful time
When the subject of HD came up, we didn’t flee. In my home state of Ohio my wife and I recalled with my cousin and his wife my parents’ struggle with HD and the disease’s big part in our decision to have only one child.
In New Haven an old college friend asked me how I was doing health-wise, and I explained to him that I had now gone beyond the age of my mother’s apparent onset.
Indeed, I felt deeply privileged to be able to take the trip. It was truly a joyful month!
From “pseudonymous” to going public
During dinner at the Nantucket home of Robi Blumenstein, the President of CHDI Management, Inc., the topic of HD naturally came up. As always, it was good to hear Robi speak of the latest progress in the search for treatments and a cure.
I spoke openly about this blog, mentioning the fact that I use a “pseudonym.” My daughter, who was sitting next to me, had recently read the three children’s books by “Pseudonymous Bosch,” known as the Secret Series. Shocked, she asked, “Are you Pseudonymous?!”
No, I explained, I wasn’t. But I let her take in everything about the blog as I resumed the conversation with Robi and the other guests. For the first time, she learned that I blog about HD. Surely and steadily she is learning more about her father’s own long-held secret and witnessing how I am going public about it. (Click here to read more.)
An extra special vacation
As I put down the first notes for this entry after our arrival in San Diego on July 28, I told myself: “mission accomplished!” I had planned this trip since summer 2009. We reached all of our goals and kept on schedule, with no flat tires or major car emergencies. We managed to keep good humor in close quarters, and our daughter showed great patience as she spent long hours in the back seat far from home, beloved pet dog, and friends.
Gene on the Mickelson Trail in South Dakota (family photo).
Traveling through our great country and showing it to my family – including many places that I myself saw for the first time – left me with a sense of the grandness of our land, our planet, and, indeed, our universe. We felt part of it all, from the storm and the bears in Yellowstone to the peaceful and secluded shoreline of Nantucket to the bustling floors of the U.S. Capitol in Washington, D.C. We’re not just in America. We’re of America.
We were just one small family among millions enjoying their summer vacations. But for us this was an extra special vacation, one that I hope will always be a reference point for our daughter, no matter what the outcome of my situation as a person gene-positive for Huntington’s disease.
Like so many people in my position, I have planned for the worst yet tried to live as if it will never happen.
I know that I could very soon follow in the footsteps of my mother, who was reduced by HD to a mere shadow of herself and died in 2006.
But I’ve tried to pack in as much life as possible.
Seizing the moment
Ever since testing positive for HD in 1999 and taking part in the birth of our HD-free daughter in 2000, I have worried deeply about whether I will see her grow up, graduate from college, and set out on her own life of work and love.
I have been blessed. Whereas my mother probably had the early psychiatric symptoms of HD in her late 40s, I reached my 50th birthday apparently free of the classic symptoms of HD. Still, all the scientific evidence suggests that the genetic defect is already attacking my brain and perhaps causing subtle, almost imperceptible symptoms.
On June 27, the day after my daughter’s tenth birthday, I seized the moment and embarked with my family on a month-long vacation. I wanted to take advantage of my good health by bringing our family closer together and creating lifelong memories for our daughter.
The force of nature
In this day and age of plane travel, we toured America coast to coast by car, just as my parents used to do with my family in the 1960s and early 1970s. (I didn’t ride on a plane until age 18, but my daughter had already flown to Brazil before she turned one!) From San Diego we drove to the Excalibur in Las Vegas, spent a night in Salt Lake City, and then headed to Yellowstone National Park.
At Yellowstone we experienced the beautiful and haunting power of nature within the first few hours. Driving home at dusk after watching the Old Faithful geyser, we saw a grizzly bear crossing a river near the road.
A baby black bear near our car on our last day at Yellowstone (photo by Gene Veritas)Moments later, driving back to our hotel in West Yellowstone, Montana, flashes of lightning lit up the western sky. It started to rain hard, and then a storm of hail forced us to stop on the shoulder. We feared that our windshield might crack. The car thermometer plummeted from 70 to 45 degrees in just a few minutes.
Once the rain cleared, my daughter couldn’t wait to return to the hotel to write down in her trip journal the assault of nature she had just experienced.
Touring a diverse land
It set the tone for the rest of the trip – a symbol of the vastness and geographical and cultural diversity of our great country.
After Yellowstone we ate trout caught by my daughter and Huntington’s Disease Society of America (HDSA) national board member Rob Millum at his pond in Buffalo, Wyoming; witnessed the majesty of Mount Rushmore, the Crazy Horse Memorial, and Wind Cave National Park in South Dakota; saw cheese-making at Decatur Dairy in Brodhead, Wisconsin; visited Notre Dame and Yale, two of America’s leading universities; spent several relaxing days at a college friend’s home on Nantucket; ate coal oven pizza in Greenwich Village with another college friend; and viewed the Liberty Bell and Independence Hall in Philadelphia.
Rob Millum expertly caught, cleaned, and grilled trout (photo by Gene Veritas). We also saw the spectacular museums and public buildings and monuments of our nation’s capital; experienced the wisdom and ingenuity of Thomas Jefferson’s Monticello in Virginia; learned, in a visit to Memphis, about the deep impact on our land of Elvis Presley and Martin Luther King Junior; strolled through the artful town of Santa Fe, New Mexico; visited the site of the construction of the first nuclear bomb at nearby Los Alamos; and, as a grand finale, took in the Grand Canyon.
Along the way we enjoyed many dishes new to both my daughter and my wife, who is Brazilian: Wyoming buffalo meat, New Haven pizza, Philly cheese steaks, Memphis barbecue, and New Mexican cuisine.
Mount Rushmore the night of July 4 (photo by Gene Veritas)During much of the trip we renewed ties with old friends and family members who graciously opened their doors and cooked us wonderful meals, a welcome break from hotels and the fast food we ate during 500-mile days on the highway.
A break from HD
We logged 8,300 miles in 32 days. The pace was hectic but exhilarating.
Throughout most of the trip I simply forgot about Huntington’s disease. As a fellow HDSA-San Diego board member put it, I deserved this vacation! From late 2008, when we began revamping our chapter website, until this past June I have blogged a couple times per month, put out several chapter e-newsletters, attended the CHDI (unofficially known as the Cure Huntington’s Disease Initiative) conference in Palm Springs, and worked in a range of other chapter activities.
In the midst of all this, in September 2009, my father, the Huntington’s disease warrior who cared for my mother for fifteen 15 years, died just a few days before his 82nd birthday.
For those 32 days I barely glanced at e-mail.
A joyful time
When the subject of HD came up, we didn’t flee. In my home state of Ohio my wife and I recalled with my cousin and his wife my parents’ struggle with HD and the disease’s big part in our decision to have only one child.
In New Haven an old college friend asked me how I was doing health-wise, and I explained to him that I had now gone beyond the age of my mother’s apparent onset.
Indeed, I felt deeply privileged to be able to take the trip. It was truly a joyful month!
From “pseudonymous” to going public
During dinner at the Nantucket home of Robi Blumenstein, the President of CHDI Management, Inc., the topic of HD naturally came up. As always, it was good to hear Robi speak of the latest progress in the search for treatments and a cure.
I spoke openly about this blog, mentioning the fact that I use a “pseudonym.” My daughter, who was sitting next to me, had recently read the three children’s books by “Pseudonymous Bosch,” known as the Secret Series. Shocked, she asked, “Are you Pseudonymous?!”
No, I explained, I wasn’t. But I let her take in everything about the blog as I resumed the conversation with Robi and the other guests. For the first time, she learned that I blog about HD. Surely and steadily she is learning more about her father’s own long-held secret and witnessing how I am going public about it. (Click here to read more.)
An extra special vacation
As I put down the first notes for this entry after our arrival in San Diego on July 28, I told myself: “mission accomplished!” I had planned this trip since summer 2009. We reached all of our goals and kept on schedule, with no flat tires or major car emergencies. We managed to keep good humor in close quarters, and our daughter showed great patience as she spent long hours in the back seat far from home, beloved pet dog, and friends.
Gene on the Mickelson Trail in South Dakota (family photo).Traveling through our great country and showing it to my family – including many places that I myself saw for the first time – left me with a sense of the grandness of our land, our planet, and, indeed, our universe. We felt part of it all, from the storm and the bears in Yellowstone to the peaceful and secluded shoreline of Nantucket to the bustling floors of the U.S. Capitol in Washington, D.C. We’re not just in America. We’re of America.
We were just one small family among millions enjoying their summer vacations. But for us this was an extra special vacation, one that I hope will always be a reference point for our daughter, no matter what the outcome of my situation as a person gene-positive for Huntington’s disease.
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