Patient with ALS goes home for his birthday

Patient with ALS goes home for his birthday

It’s rare to hear someone play a rousing rendition of Happy Birthday on the piano in celebration of his own special day…even rarer when that person is in a hospital room, hooked up to a ventilator, and surrounded by the staff that care for him.

But for Barry Lowe, it was a wonderful start to his 76th birthday.

Barry’s care

Lowe has been staying at Hamilton General Hospital (HGH) for nine months since being diagnosed with Amyotrophic Lateral Sclerosis (ALS). He needs to be on a ventilator around the clock. His family is unable to manage the complicated care he requires so he has been living on the Burn Unit. Lowe isn’t being treated for burns but this unit has the specialized equipment and staff to manage his complex respiratory needs. Because long-term care beds are difficult to come by, Lowe will likely be on the unit for many more months.

His ALS has progressed unusually. He can’t breathe on his own and speaking is very difficult for him, but he is still able to bang out a tune on the piano. “I’m not as good as I used to be,” Lowe says, excusing the slower tempo he now keeps.

Barry plays piano while he waits to go home for a visit

His family brought a keyboard into his room on the Burn Unit and when he has a hankering to play, one of his Nurses, or  therapists will wheel him over to it, ventilator and all. It’s a complicated process but worth the extra effort to see the pleasure he gets from performing his favourite tunes. “It’s been great,” Lowe says, “We had a sing-song here one night with a bunch of the girls.” His favourites, Amazing Grace and Edelweiss always draw a crowd.

Barry’s birthday

For his birthday, his respiratory therapists and staff on the unit planned a special trip home so he could celebrate with his family. Registered nurse Shirley McCollow accompanied him on the visit along with respiratory therapist, Christa Krause. It’s nice to see him happy,” says McCollow, “He usually sleeps all morning, but this morning he was wide awake and excited.” Transporting Lowe for the visit meant packing up his ventilator and bringing along equipment and medication in case of an emergency.

The little things that make Lowe smile aren’t always easy feats. Making sure he is safe and cared for during trips to the cafeteria or visits home takes a coordinated effort. But the joy it brings him makes the endeavour worthwhile. “It really helps,” Lowe says, “it makes a big difference.”