TO: Family and Friends
FROM: John
It has been a while since I’ve sent you an update (and many of you have spent time with Phyl/Mom recently). Nevertheless, I thought it as time as we are between adventures!
As many of you know we spent the last two weeks in September “on the beach” in Rhode Island. We rented a small house which was about 50 yards from the beach and had a great time. One week we had the remnants of a hurricane (very exciting) and the next week beautiful sunny days.
Best of all we got to see all of our sons, daughters-in-law, and grandchildren, our niece Corey (and we ate lobster). And next week we are off to Arizona. We rented an RV for two weeks and plan to visit the Grand Canyon, Sedona, Tucson and surrounds. Looking forward to visiting the desert!
In between the two trips, we had quite a few doctors visits (which kind of comes with the territory). We visited both of Phyl’s neurologists. Dr. Jim Russell at the Lahey Clinic in eastern Mass affirmed that Phyl’s lung capacity has not deteriorated in the least since the onset of symptoms. This is really good news. She is losing muscle capacity in her legs and left arm but Dr. Russell said it appears to be slow. We also visited Dr. Bob Brown, the neurologist at UMass Medical in Worcester. Here is a story about Dr. Brown that might interest you:
https://alsadotorg.wordpress.com/2017/07/26/new-comprehensive-als-review-published/amp/
Phyl continues on the study trial for the experimental drug, Amylyx, with Dr. Brown (we are pretty sure she is not on the placebo the drug seems to make her tired). She is experiencing a little queasiness and slight headaches which may be associated with the drug but we don’t know for sure. The side effects are minor if the drug does anything to slow down her development of symptoms. We have no idea if it is making a difference however since her symptom development is slow anyway.
The doctor says if the drug shows any sign of positive effect, the company has pledged to continue to make it available to everyone in the study trial after the 6 month study is over. So we continue to hope and pray.
I know that ALS is a pretty confusing disease. It has multiple potential causes, which makes treatment really difficult. The ALS Association recently released a short video which explains how the disease effects motor neurons and muscles. It is here:
https://alsnewstoday.com/2017/10/05/understanding-neurons-behind-als-3/
The most fun we have had this month was the ALS Fundraiser that our friends organized for us. They had a goal of raising $3,000 for ALS research and at present they have exceeded $4,700. Phyl had a wonderful day surrounded by friends and family. There were 5 haircutters working mostly full time all day on a Sunday with all of the proceeds going the the Massachusetts Chapter of the ALS Association (which by the way is supporting the Amylyx study trial). They also auctioned off pottery donated by her friends. Thanks to everyone who contributed to the fund raiser. The results are linked here:
http://web.alsa.org/site/TR/3rdParty/Massachusetts?team_id=363871&pg=team&fr_id=12690
————————————————–
So that is what is happening. I can also tell you that Phyl has good days and bad. The day of the fundraiser, she was happy and grateful. She got to see Noah, Colin and Elena who always light up her life. When everyone left she had a really tough day. She was exhausted and had difficulty walking which often follows busy days. Yesterday she tried to walk Riley in the fields behind our house and had to turn around rather than walking up a small hill. This is really difficult for someone who was climbing mountains in Colorado last year. She is trying to learn to not push herself so much and take breaks during the day.
Today she went to a yoga class in the morning, ran errands around town, and right now she is cleaning up the garden. She had to ask me to help with some of the gardening stuff and as much as I love helping her, she still wants to do everything herself. This is hard on her.
You can (and do) all help by staying in touch. When I got back from my own errands today, I found her in a lounge chair on the back deck (in the sun) talking with her Aunt Helen. Her voice was animated and engaged. This really helps! She knows she is loved but does appreciate it when someone reaches out to say they care.
So…. that’s it for now. I didn’t think I had much to say, but there it is. I feel ever so grateful that I have a sabbatical leave this year and I can spend so much time with Phyl. We certainly enjoy the vacations but we also love just being together at home, cooking food, and watching TV. Last night we (well Phyl didn’t quite make it to the end of the game at 1:00am) watched the Chicago Cubs win the 5th game of their first playoff round! Go Cubs!
Love to you all…..
John
Changing the Story 