Janet Wendy's status

Wendy complains that our condo's swimming pool is getting deeper. It isn't of course; what is happening is that her back is becoming more bent, her neck more bowed so her chin almost touches her chest. This is because the muscles that support her head and neck, and her spine, are becoming weaker and weaker. Despite this, she really enjoys her daily dip in the pool; but I notice that she can't do the full range of her exercises, and can't swim more than the width of the pool before she gets breathless, because the muscles she uses to breathe are getting weaker too. As I listen to her breathing when she is asleep I can tell that it is an increasing effort. Tomorrow we have another appointment at the ALS Clinic where she will try out a machine that can take over from her muscles while she is sleeping, and give these muscles a chance to rest, get ready for the next day's breathing while she is awake. Despite all her increasing disability, she remains cheerful and we find things to laugh and joke about. As for me, I'm holding together well too, most of the time. We have an increasing array of assistive devices. The latest of these, called a 'Headmaster' collar, struck us at first as akin to a medieval torture instrument, and is was a real torture for her to wear it longer than a few minutes. After it had been molded and bent to her exact anatomical shape by Susan Geis, the physiotherapist at the ALS Clinic, it's a near perfect fit, it holds her head up high so she can look ahead rather than only down at her feet. She still doesn't like to wear it for longer than about three quarters of an hour at a time but we are imperceptibly increasing the time each day. Soon, I hope, she will be able to tolerate it most of the time except when she is eating or wants to engage in animated conversation -- it holds her head up by supporting her under her chin, so it interferes with both eating and talking. Even without it, talking is something she doesn't do very well any more because those muscles are weakening too, and another problem looming up in her future is how we can communicate if her voice fails altogether. She pins her faith in the laptop MacBook Pro that I got specifically in anticipation of speech difficulty, but when she has tried to use it, she has had trouble getting her fingers to work the keyboard and the track pad, so I am a little bit uncertain whether this will prove to be a satisfactory solution. Time will tell, no doubt.