TO: Our Family
FROM: John/Dad
We had some good news today and I wanted to share it. In order to participate in a Mindfulness Meditation Study with Penn State University, Phyl needed to have a FVC – Forced Vital Capacity (breathing) test done. We did it this morning and were a bit nervous, as ALS effects the diaphragm and chest muscles which control breathing. Kind of a big deal!
So her test results were completely normal. The disease has not impacted her breathing at all (yet). In fact, her FVC score was exactly the same as it was last August when we were concerned about her breathing. She does have a constricted larynx problem which is made worse by stress (which we have a lot of these days). But this is manageable with breathing exercises and anti-anxiety meds.
Damn good news….. which we really needed!
Otherwise, she is learning to talk about her disease (slowly). When we wake in the morning, it feels particularly heavy but she gets up and gets going and we’ve had some pretty good days. Today, we awoke to crying baby. Our granddaughter Elena is here! That makes her day.
We have our first ALS Clinic on May 15, which is the beginning of regular check ups including Physical Therapy, Occupational Therapy, more breathing tests, and a discussion on potential treatment. We are also on every damn waiting list I can find for Stem Cell research, which is supposed to get started this year at UMass Medical and Mass General. There are also several treatment drugs in the pipeline, but nothing terribly effective just yet. As long as her breathing is good however, we have time. So we get through each day trying to remember to be grateful for all that we have, especially our family.
While we have good moments (like when we are with our grandchildren), there is a heaviness we both feel that won’t go away. Phyl is having more difficulty walking. She is fine in the house and if we walk VERY slowly around the block with the dog she is okay. Yesterday I ordered a rollator, which is a rolling walker because she did much better in the grocery store pushing a cart than walking alone. It was a very difficult decision for Phyl but she was accepting that this was in the future (not too distant). She is struggling with not being able to do all that she wants and was in fact able to do a year ago. That said, she just went off to go swimming….. and she has yoga tonight!
On Thursday to Sunday this week, we will have all three of our sons and their wives in the house and all three grandchildren! We are really looking forward that gang! At the same time, I’m asking all of our family to be aware that Phyl cannot do everything that she used to do. She will need help cooking, cleaning, etc. Lets allow her to play with Elena, Noah and Colin and we need to step it up when it comes to routine chores while you are here. And if you get her to go for a walk with you, please go very slowly.
Please do ask her about the disease as she needs to talk to normalize it a bit. But at the same time, she wants to talk about her grandchildren, our asshole of a President, and the Red Sox! I found this short article about how to interact with family members with ALS, which might help (below).
Love you all…….
John
Changing the Story 