TO: Friends and Family…
It has been two months since my last update on Phyl and there’s not much new on the ALS front. Phyl continues to lose muscle mass, strength and physical abilities slowly. She is using her mobility scooter in the house pretty much full time now. She had been using a rollator and trying to walk a bit but that seems to be over. We got a new power wheelchair delivered but she is not wanting to use it until it is really needed – and she loves her scooter. She can transfer from the scooter to chair or bed on her own, but I can see the day will come when she will need more help. She took a bad fall about a week before Thanksgiving and it scared us. Nothing broke (this time) but with her osteoporosis worsening, falling could be really bad.
Yesterday we had our regular 3-month visit to UMass Medical for strength and breathing tests. After the last visit we were pretty happy as the there was little change from the previous visit. Yesterday’s numbers were not so good. Her muscle leg and arm strength measurements were down and her lung capacity had dropped significantly. We were disappointed but not really surprised as we could both tell things had gotten worse over the past few months. Phyl wanted everyone to know and she is willing to talk about it if you want to call.
Since she rarely complains, it is hard for you to know how difficult daily living has become for her. Every move of her body requires a plan and a decision – and is hard. Every time she can’t reach her cell phone, pick up something heavy, zip up her jacket, open a jar etc. is a new disappointment. I prepare her meals and put them in front of her and sometimes have to cut things for her to eat. I often help her get dressed as her arms and hands are weak. She has to type on her computer with one finger as her fine motor skills are gone in her hands. And her voice is getting weaker as she loses lung capacity. She is dutifully reading sentences into a computer program called Model Talker. This is a voice capture program that will recreate her voice, so if the day comes when she can’t talk and needs to type into a computer to communicate, it won’t be a “computer voice” that is generated but her own. I know this is hard to hear, but she wants you to know. And while every day there is some new research finding on ALS, nothing is near enough to be of help at this point.
We tried a Parkinson’s drug called Ropinirol which her doctor said might help and was available for off-label use. We were excited about its potential as cell (lab bench) studies indicated it was a possible help even though it had not been tested on ALS patients. Phyl wanted to be the first to show it worked – but after a few weeks the nausea got so bad and she was losing so much weight that she had to stop the drug. It took about 3 weeks off the drug for her appetite to return – but she is eating well again now. We know that no drug or treatment available today will reverse or stop the progression of the disease, but we continue to look for ways to slow it down. Amylyx, the experimental drug she has been taking for over a year is helping and this continues to be available from UMass Medical. Thank God! Most people with ALS decline much more quickly than Phyl is experiencing and we are grateful to be part of this study.
I realize this all sounds pretty bad…. and of course, it is. What continues to amaze both of us is that we get up in the morning and keep going. I get up before Phyl, pray, feed the dogs (we are taking care of Brian’s dog for a while) and then have breakfast while reading the newspaper. Phyl wakes, checks social media and email for messages from you all, and then does some stretching. I get her breakfast while she reads the paper and then we make a plan for the day. She begins almost every day with a ride on her golf cart in the fields nearby with a friend or two and our dog Riley. Living life one day at a time makes it possible. Our big adventures are shopping trips with her scooter and our accessible van. Funny how we enjoy these simple things as long as we are doing it together.
Visits and calls from friends and family really help! Thanksgiving was wonderful as we had all three of our son’s and their families home! For Christmas, Brian, Belita and Elena will be in Colorado, but we’ll see Jeremy, Jake and their families as well as my mother and brothers. And right after Christmas, we are off to Aruba for 3 weeks. Phyl is really looking forward to the warm weather, as she struggles with the cold. While we are gone, a contractor will come in and begin gutting our downstairs bathroom to build us a handicap accessible shower etc. This is a huge project and we have been working on design, purchasing fixtures, floor tile, lighting, etc. etc. etc. for the past few weeks. It won’t be done by the time we return but hopefully they will make significant progress.
We have an aide that comes in three mornings a week to do household stuff under Phyl’s direction and watchful eye. This will increase over time. I suspect we’ll have someone come in when I’m teaching next semester as I must be on campus two afternoon’s a week. Fortunately, some of my work I can do from home. I’m giving up advising students since this requires more meetings on campus than I want. I’m looking into early retirement, so I don’t have to leave Phyl during the day. I’ll continue to teach online but we’ll be making lots of changes over the next year (all one day at a time).
So that’s us….. as difficult and sad as it seems at times, if you were sitting in our living room talking with Phyl – you probably couldn’t tell there was anything wrong. She loves to chat and visit with friends and of course our family. Her friends have teamed up to bring us meals twice a week which is really helpful. Its kind of amazing how we’ve adjusted and adapted to her limitations, not without difficulty and sadness of course. But we appreciate all that we have so much more than if life was easy. I wouldn’t wish this on anyone and at the same time, the small things we do together give us so much joy and even some peace at times (prayer helps). I know many people with ALS don’t have the resources or support that we have and we never forget to be grateful. Most important we have each other…
Love to you all…..
John
Changing the Story 