Couple decide to live life to fullest as disease takes its toll
December 25, 2012 10:00 AM
Renovations are nearly complete on the new first floor master suite Suzanne and Neil Alexander had built at their O'Hara home. New features within the house are meant to help prolong Mr. Alexander's independence as his amyotrophic lateral sclerosis progresses.
The Alexanders took down their garage and added a new first floor master suite at their house in O'Hara.
Neil Alexander gives a tour of the new first floor master suite he and his wife Suzanne built to be more accessible as Neil's ALS progresses/
Neil Alexander and his wife, Suzanne, talk in the bathroom attached to the newly renovated master suite in their house in O'Hara. Neil, who was diagnosed with amyotrophic lateral sclerosis in 2011, says that while he can drive just fine, holding a bar of soap is difficult. One feature of the wheelchair-accessible bathroom is soap dispensers that bypass the need for Neil to grip a bar of soap.
Suzanne and Neil Alexander in their home in O'Hara on Wednesday.
The wheelchair accessible bathroom of the new first floor master suite Suzanne and Neil Alexander.
By Kaitlynn Riely Pittsburgh Post-Gazette
The second-to-last gifts the Alexander children of O'Hara will find beneath their Christmas tree this morning are two tickets to Radio City Music Hall in New York City.
Their father, Neil Alexander, learned 18 months ago that he had amyotrophic lateral sclerosis, a condition more often known as ALS or Lou Gehrig's disease. The average life expectancy for a person with ALS is two to five years after diagnosis.
Mr. Alexander and his wife, Suzanne, have decided they will spend the time he has left making memories as a family.
That's why, when 10-year-old Abby and 8-year-old Patrick open their final presents this morning, they'll find two plane tickets to New York City.
And if they go to their rooms, they'll see their bags are packed.
And they'll realize that their flight leaves this afternoon.
"We'll be on the plane by 2," Mrs. Alexander said.
It's something they've long planned -- surprising the kids with plane tickets and leaving Christmas Day -- but now their plans have a new level of urgency.
"You do have a limited sense of time," said Mr. Alexander, 47, an executive at Downtown-based financial firm Hefren-Tillotson.
That limited sense of time was especially acute in June 2011, when Mr. Alexander received his diagnosis. He and his wife spent the first few months preparing for his death. But then they decided to live with ALS.
They recently finished a renovation of their house, moving the master suite from the second floor to the first and making other changes to accommodate Mr. Alexander's needs.
They also decided to spend their time helping others live with ALS.
Earlier this year, the Alexanders created LiveLikeLou.org, a fund that has been raising awareness of ALS and supporting research and patient care. The fund is named after baseball legend Lou Gehrig, who died from ALS and who Mr. Alexander considers a model for living with the disease.
And for the past several months, the family has become more intentional about making memories, the ones that will "most cement who Neil is to this family," Mrs. Alexander said.
That includes the little things, like memorizing the sound of Mr. Alexander's laugh and the feel of his hug. And the big ones, those that go in the photo albums.
Mr. Alexander is a history buff, so they went to Washington, D.C., for the Fourth of July. A few months ago, they had a spur-of-the-moment chance to meet President Barack Obama, so they drove to Columbus, Ohio.
As a couple, one of their long-planned trips was to return to Ireland, where they spent their honeymoon, for Mr. Alexander's 50th birthday.
"That was our big deal," Mrs. Alexander said. "He's 47 now. So we just moved it up."
They went to Ireland in August with their children, and on Christmas Day the family will fly to New York City for a four-day trip that will start with a Christmas show at Radio City Music Hall and will include an ice skating session with Mr. Alexander's former Fordham University classmates and their kids.
ALS has not yet slowed him down significantly, but it has made Mr. Alexander's hands weak, and he can no longer tie a tie or fasten his belt without assistance. The disease attacks the motor neurons, eventually leading to paralysis and difficulty breathing.
Mr. Alexander clears his throat frequently and has a slight limp. Still, the Alexanders have made many plans for the coming year, ranging from a romantic trip to St. Lucia, to a visit to Florida for spring training, to a six-week trip across the country in the summer.
There's no way to know how quickly Mr. Alexander's ALS will progress, and that's one of the reasons the family is doing so many of their more active trips now. His prognosis may be bleak, but the family is still making plans, Mrs. Alexander said.
"We still have time," she said. "Neil's talking about one or two years from now, which is actually a big difference from a year ago.
"And I think that's one of the things that keeps us going," she said. "We have faith that we have a couple more years."