TO: Friends and Family
I apologize for the confusion around New Years Day phone calls. I know many of you texted Phyl to see if she could chat on the phone – as I asked. It has become increasingly difficult however for her to have enough breath to talk for very long. New Years Day was particularly difficult.
Here is what happened…..
Starting in October, Phyl went from using her respirator only at night to using it for a few hours a day. By the end of December, she needed her respirator on an off for much of the day. Christmas Eve was wonderful! She was off the respirator and engaged with our kids and grandchildren for several hours. It was great to see her smile! But she paid for it for the next few days and was not able to get off the respirator more than a few minutes (to eat quickly). I thought she was getting better by New Years Day but it was not so.
Things seem relatively stable right now. She wears her respirator all day and night except to eat and occasionally to chat with friends. Yesterday two of her friends took her to the Montague Book Mill for coffee and a chat. She says she was able to participate in the conversation for about 45 minutes before she needed her respirator again. This is probably the best we can hope for.
Over the past week she has been having lengthy back and forth “conversations” using text messages with several of you. She really enjoys this and is getting comfortable with her new iPad.
So this is how to communicate with Phyl (and I hope you will). Please send her a text message from time to time. You don’t need to say anything important (how’s the weather in Massachusetts is always a good question – and in a few weeks you can start asking about the Red Sox!). If you have the time, back and forth text messages work well. If you have the tool “ What’s App” is another good way to communicate. Of course for those of you who are local, she still loves your visits!
We are scheduled to visit her ALS Clinic next week where we will talk about what’s next. We are hopeful that she is able to stay on the Bipap (bilevel positive airflow pressure) respirator which is “non-invasive”, for a long time. If we can keep her throat and lungs clear, there is no reason we will need to consider the more invasive tracheostomy type respirator. That is major surgery and we don’t want to go there if possible. While communicating and eating is a bit of a challenge, we can manage life on the Bipap respirator. I worry most about Phyl feeling alone and isolated. Communication from you all helps keep her smiling!
Love to you all…..
John
Changing the Story 