“After dinner we walked our neighborhood route. Priscilla made it one quarter of the way around on her own and then needed to lean heavily on my arm the rest of the way, stopping often and struggling mightily. Quite a change in only a few months.”
– From my journal, August 2012
Priscilla and I had always enjoyed exercising together, particularly walking, biking, and swimming. We were still taking 10- to 12-mile bicycle rides as far into her disease progression as April 2012. (We did one of the rides that month with a student half our age, who invited Priscilla to set the pace, and then said at the end she’d found it a bit fast!)
But walking was by far our favorite shared exercise, because it gave us a chance to talk out how everything was going in life as we “got away from it all” for a little while. I shared in an earlier post how Priscilla’s symptoms first became perceptible on a walk, and how the increasing difficulty of getting around our 2½-mile neighborhood route provided an indicator of their progression.
The walk described in the quote above was the last one we took all the way around that route. The next thing we tried was doing half of it earlier in the day, and the other half later in the day. Unfortunately this was still too difficult.
Then Priscilla had an idea. She still had the aluminum walker she’d needed to use after the car accident we’d been in some years before. Now she thought of getting snap-on wheeled attachments for the bottom of its legs, to replace the simple rubber pads that were there. (It was only months later that her friend at the medical lending closet gave her the deluxe walker.) The streets and sidewalks wouldn’t be smooth enough, or clean enough of debris, for the small wheels such attachments had. But there was a newly paved off-road fitness trail just a mile from our house. Priscilla believed the customized walker would do just fine there, giving her good support so she could continue walking.
So we visited some medical supply stores and Priscilla found just what she was looking for. The front wheels even swiveled for easier steering. While she test-drove the new equipment around the store, I started joking with the clerk. “What did I do this weekend? Oh, my vehicle was in the shop.” “Tire rotation,” he quipped in response.
The wheeled walker worked perfectly. We’d drive over to the trail, park by an entrance, and head out into nature. At first Priscilla could go nearly the distance of our old neighborhood route. It was bittersweet to see this distance shorten a little bit each time as we continued to enjoy our walks together, now in even more scenic surroundings. But as late as Thanksgiving we were still using the trail, thanks to unseasonably warm fall weather.
However, over the winter her symptoms progressed further, to the point where even a short walk on a smooth, paved trail had become too much once spring returned. We also had to give up biking because of energy and balance issues. Nevertheless, Priscilla could still swim beautifully. We’d joined a local fitness center a year and a half before, and swimming had initially strengthened her muscles enough to offset some of the weakness the disease was causing. Now this became her main exercise. Though it was increasingly time-consuming, eventually taking over three hours per session, we made every effort to go swimming at least twice a week.
It was fascinating to watch her get into the pool. She would use the walker to get to the ladder at the deep end, balance precariously between its upper railings, lean forward until she started falling, and in midair suddenly achieve perfect diving form (because her muscles were no longer bearing weight) and slip gracefully underwater.
Swimming gave Priscilla more than another year of very beneficial exercise after she had to stop taking walks, even as the progression of the disease forced her to take new approaches to keep going. After one swim in January 2013 she looked over to me from her lane and said, “I’m afraid I’m not going to be able to climb out by the ladder any more.” So we swam together down to the shallow end and took the stairs, with her clutching the railing all the way up. But we’d learned not to think of things like this as “milestones in deterioration.” Rather, we decided, the stairs were our friends. They were helping us to keep doing what we wanted to do.
In mid-August 2013 Priscilla asked me to bring her in to the pool in the transport wheelchair. Previously she’d been walking from the parking lot to the pool with her walker, but lately this had been using up all her energy before she even got to swimming. So instead of going separately into the men’s and women’s locker rooms, we started sharing a handicapped bathroom for changing and showering.
Only a couple of weeks later she found that climbing the stairs out of the pool had become too much for her. But it was equipped with a lift chair (which worked by hydraulics, of course), and the lifeguards very kindly lowered it into the pool for her upon request and raised her out once she was buckled in. I would bring over the transport wheelchair from the ladder at the other end of the pool. Priscilla never needed the hydraulic chair to get into the pool—right to the end she did that graceful dive.
The next month, because we felt that we still had a lot of swimming ahead of us, we both bought new goggles, and Priscilla got a bathing suit that came in two pieces but looked just like a one-piece suit for swimming laps once it was on. Changing had become quite a struggle and this made things easier.
One day shortly after this, Priscilla swam her usual mile, even though she could barely use her legs, and then asked the lifeguard, “Would you please lower the lift chair into the pool for me?” “Why?” she responded. She’d come on shift after we started, and she hadn’t noticed any difference between Priscilla and the other swimmers.