TO: Family and Friends
As most of you know, we are getting ready to leave for warmer weather in a few days. We rented a bungalow on the beach at Punta Uva near Puerto Viejo, just south of Limon on the east (Caribbean) coast of Costa Rica (in case you are in the neighborhood). We’re hopeful the warm weather will help Phyl’s muscles as the cold has been hard on her. We are back in Massachusetts on March 9.
Yesterday, she had her final visit and evaluation as part of the 6 month experimental drug trial for Amylyx. I thought that her loss of muscle ability during the time she was in the trial was slower than the previous 6 months and the test scores seem to agree. In fact, her muscle strength scores yesterday were no different than in November or January. This was really good news and a huge relief! It is not a “cure” but hopefully has slowed down the progress of the disease.
She is still weak and her stamina is low but she is able to climb stairs (with effort), drive her car, and walk around the grocery store with a cart (and me). We celebrate small victories! Her left hand is pretty useless in the cold but gains function when warmed up (so she can type with two hands on her laptop most days). All in all, she is doing much better than expected based on what we know about ALS. I don’t know if this is due to the Amylyx or if her rate of disease progression is just slow but we are grateful.
Although the Amylyx trial is over and she is off the drug for now, the company is offering to allow us to continue on the drug for the next year. It won’t start until we return from Costa Rica but we are really pleased to have this opportunity! We are watching two other experimental drug trials as well to see when they open and we’re hopeful the stem cell research progresses. Ever since the Ice-bucket Challenge there has been much progress in research which hopefully will result in a treatment someday soon.
AT THE WOMANS MARCH
One of her big days this month was “walking” in the Women’s March in Northampton with her friends who pushed her in her wheelchair. Frankly, this was a big step as she had not wanted to be seen in a wheelchair but she so wanted to join in the march. She was very grateful to be able to participate. Her friends have been great…. lunch, coffee, museums and other outings. The past two weekends we have visited Brian, Belita and Elena in Rhode Island and then Jeremy and Sam in Burlington VT. And Saturday, we head for Somerville to spend the weekend before we leave with Jake, Shannon, Noah and Colin!
Nothing cheers Phyl up more than when friends and family rally around her. You remember the haircutting fundraiser she did for the ALS Association of Massachusetts in October. She loved doing this and felt warmed by all the support. The ALS Association put $3 million into the Amylyx trial, so we feel pretty supportive of this organization. And she is doing another fundraiser, this time a Walk-a-thon, on May 12 in Northampton.
I’ve attached the link to her Walk-a-thon team page below. She named her team “Phyl-in-tropics” and she plans on wearing a flower/tropics shirt to the event. We hope you can “join her team” and walk with her (or help push her wheelchair) and wear your own flower shirt. But if you can’t be in Northampton on May 12, you are invited to make a donation in her honor. Here is the link:
http://web.alsa.org/goto/Phyl-in-tropics
The amount you can donate is much less important than her just seeing your name on the list!
Our next big “test” will be on March 16 when we go back to UMass Medical Center for her ALS Clinic visit and they measure her lung capacity. For now, she is good. And of course I don’t know what the long term will bring, but we are focusing on the near future and warm weather for the next month!
Love to you all….
John
Changing the Story 