One day at a time

TO:  Our Family

FROM: John

It has been some time since I’ve sent you an update on Phyl.  This is mostly because we have settled into a pattern and there is much less “excitement” lately.  We are living one day at a time and trying to enjoy life!

Here are a few updates:

Phyl has been getting used to her new carbon, flexible foot brace that gives her left foot more lift.  This allows her to walk (mostly) normally without getting too tired.  She is wearing it during the day, on errands, for exercise and gardening, but not always around the house.  It has made a huge difference in her attitude!   We bought her a couple of walking sticks today, to help with her balance.  They are less cumbersome than a walker if she is going a distance.   Her biggest disappointment has been having to give up walking Riley (our dog) in the fields behind our house because it is just too rough and tiring.  I’ve inherited that job!  But we have been biking and last week we went river rafting with our niece Corey, Sam and Jeremy.   Since the rafting trip required only upper body strength (to paddle) she said she felt “normal” and had a wonderful day on the river.


We visited UMass Medical Center in Worcester last week to be evaluated for a new drug trial, which I suspect she will be accepted into.  It is for an experimental drug called Amylyx 0035.  It is a combination of two drugs that are currently used for other diseases and seem to have some effect individually on slowing the rate of muscle loss for ALS patients.  This is the first time the drugs have been tested together so we don’t know how it will work and we also don’t know if she will be in the placebo group – but it is worth a try.  Another aspect of the drug trial is that she will be monitored really closely and given an MRI and PET scan.  If there is anything worth noticing about her current health, they will see it for sure.  We hope to start the trial sometime in the next few weeks.

We were hopeful of getting into a new stem cell trial which just opened but they are not accepting anyone over 60.  She was a bit disappointed as she kind of expects the new experimental drug to cause nausea, since the approved ALS drug Riluzol (which she had to quit) made her sick.  We are also questioning the value of taking the newly approved ALS drug, Endavarone, since it is a daily infusion and requires a visit to a doctors office.  The effect on ALS was real but minimal.  It will be available in October so we will decide then.  The Amylyx is a powder taken with water so much easier to take.  We’ll see….



The good news is that the disease progression is very slow, in fact much slower than average.  From everything I’ve read, the rate of progression is unlikely to change significantly over time.  Also, she has been tested for lung capacity three times over the past year and there is no loss of capacity (this is the big worry).  While she is losing strength in one leg, it is slow and other symptoms have not yet developed.   I follow the research on ALS and it seems that there are several new drugs being developed along with the stem cell treatment.  The basic research on the cause of the disease has exploded over the past few years.  The ALS community is truly excited and hopeful.  So as long as the disease progression is slow, we remain really hopeful.

The biggest news has been the effect of physical therapy.  She has a PT who knows ALS and has given Phyl appropriate exercises.  The deal is we want to strengthen the muscles that are functional and not stress those that are struggling.  Her back is feeling much better and even her yoga instructor said she is looking stronger.  Most days she feels pretty good as long as she limits her activities and is careful walking.  Last week she put her foot down while bringing her bicycle to a stop and her left leg gave out.  Fortunately, she ended up falling on the grass.  As long as she pays attention, she is fine but the weakened left leg can be a problem.  Phyl knows her legs will get weaker over time but she is doing everything she can to stay strong as long as possible.  Her PT exercises seem to be helping her balance.



In the mean time, we are living our lives.  Jake was here this past weekend with Noah and Colin and we all had a blast, bike riding and hanging out in the pool.  On Friday we are picking up the keys for Brian, Belita and Elena’s new house in Rhode Island and we hope to have a couple of beach days while there!  Phyl has two groups of girlfriends visiting in August and September, one from high school and the other from college.  And this week she is going to a museum in eastern Mass with a gang of her local friends.  Right now she is at the corner coffee shop with a few of her friends.  She is busy!

I am on sabbatical leave for the next year, so I’m available to provide support 24/7.  Today I drove her around on her shopping errands and we went out for lunch.  We decided we need to sell one of our cars because she has a bit of difficulty with the clutch on my car and it will get worse (both the car and her leg).  She was disappointed as she loves to clutch and shift gears like a race car driver….. but we’ll go look for a sporty automatic so she can still zip around town!

Of course we are not kidding ourselves about this disease.  The long term prognosis stinks.  Phyl’s attitude is amazing (most days).  After a few days of “the sadness” which crept up on both of us last week, she woke up one morning and said “I’m tired of being sad… I’m going to be happy again!”  We meditate together and do some mindfulness exercises to try to stay in the day.  When we focus on today, things are okay.  When we think too much about the long term it becomes more difficult.   We had a great day today!

Of course we will prepare the house for her having less mobility when the time comes.   We will move our bedroom to the main floor and make room and get some ramps for a power wheelchair to get around.  I suspect I’ll need to get a wheelchair accessible van eventually.  Folks with ALS who can walk often try to limit their walking as it is so tiring.  Someday in the future, hopefully not soon, we will make the adjustments.



But for now we are staying active and enjoying each other’s company.  We look forward to two weeks in Rhode Island on the beach in late September, a visit to friends in Arizona in late October or November, and then someplace warm in February.   Most days we work in the gardens, hand out by the pool, and run errands together.  We’ve become very appreciative of everything we have!   We are blessed to have so many family members who live so close.  And if you are one of the family members who is far away, please call Phyl to check in.  She loves hearing from you….

Love to you all…


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