TO; Friends and family…..
My last note mentioned that we got hospice to come to the house and it seems that it was just in time. I needed the help and Phyl needed the drugs! The hospice nurse helped us treat her bed sores and the places where her mask straps were causing redness. Hospice also took over ordering all the meds, saving me the hassle of keeping track and all the trips to the pharmacy. The nurse visited 3 times the first week, 2 times the next and is now on a once a week plan. I also text with her almost every day and get responses within minutes about care for Phyl. This is working out….
But I’m writing now to tell you that Phyl is not doing well. She has not been sleeping at night (but seems to be fine napping during the day). Her communication ability has taken a down turn as those of you who have sent her messages surely noticed. Her right hand has little movement any more and although she was getting better using the head mouse to direct a cursor on the iPad, at this point her neck is too weak to use it to type. She is very frustrated. She can use the head mouse to open messages but not respond. This morning she asked me to read her texts and emails to her for the first time, as this was just easier.
Please do continue your texts and emails. I will read them to her. She can’t zoom or Facetime as it is too difficult. If you want to visit, please feel free to contact Phyl but please also copy me so I can schedule. I know the kids are thinking about a visit soon and you may get bumped for our grandchildren! Sorry….
The bigger problem is with her breathing. She has no lung capacity of her own. We can’t take her respirator mask off for more than 30 seconds. And for the first time, she experienced dyspnea (air hunger) with her respirator mask on. Fortunately, hospice had provided me with liquid morphine which settles her quickly. She had air hunger attacks about once a day last week but for the past few days they have been happening more often.
Morphine works quickly but makes her sleepy and coupled with the anti-anxiety drugs, she spends much of the day in a very unresponsive state. Yesterday she was able to interact a bit with a group of friends and then with family for dinner but today she is lethargic and sleepy again. Without the ability to communicate, it is a real guessing game to try to figure out what she needs; scratch an itch, reposition her legs or head, or rock her chair back etc. So she is pretty uncomfortable much of the time.
Phyl wanted you to know why she has not responded to your emails and texts. She also wanted me to share the attached article about the experimental drug she has been on. We really got lucky to get on the Amylxy trial because it is the first drug in 30 years to actually make a difference in the progress of the ALS symptoms and is far better than the one given previously. The attached article (pdf file above) is really about the two Brown University alumni that developed the drug but the “star” of the article is surely Phyl. Be sure and read the first and last paragraph anyway!
Also, when it came out Phyl’s favorite doc at UMass Medical (who we have been seeing for several years) wrote the following to Phyl….
Such a great article! We are all very proud to have been part of that study as I’m sure you two are as well. When we all leave this earth, we’ll think about what we accomplished and the legacy we leave behind. We’ll all have our children and grandchildren as part of our legacy and something to look back on with pride, but you two will have so much more as well. Phyl was one of the very first people to join the study and has stuck with it for so long. The amount of information you two have contributed to the study of this drug is phenomenal and will impact the lives of so many ALS patients and families.
That was nice…..
If anyone wants updates, please text me. I’m also happy to chat on the phone but text ahead to make sure I’m free.
Love to all….