TO:  Friends and Family

I apologize for the confusion around New Years Day phone calls.  I know many of you texted Phyl to see if she could chat on the phone – as I asked.  It has become increasingly difficult however for her to have enough breath to talk for very long.  New Years Day was particularly difficult.

Here is what happened…..

Starting in October, Phyl went from using her respirator only at night to using it for a few hours a day.  By the end of December, she needed her respirator on an off for much of the day.  Christmas Eve was wonderful!  She was off the respirator and engaged with our kids and grandchildren for several hours.  It was great to see her smile!  But she paid for it for the next few days and was not able to get off the respirator more than a few minutes (to eat quickly).  I thought she was getting better by New Years Day but it was not so.

Things seem relatively stable right now.  She wears her respirator all day and night except to eat and occasionally to chat with friends.  Yesterday two of her friends took her to the Montague Book Mill for coffee and a chat.  She says she was able to participate in the conversation for about 45 minutes before she needed her respirator again.  This is probably the best we can hope for.

Over the past week she has been having lengthy back and forth “conversations” using text messages with several of you.  She really enjoys this and is getting comfortable with her new iPad.

So this is how to communicate with Phyl (and I hope you will).  Please send her a text message from time to time.  You don’t need to say anything important (how’s the weather in Massachusetts is always a good question – and in a few weeks you can start asking about the Red Sox!).  If you have the time, back and forth text messages work well.  If you have the tool “ What’s App” is another good way to communicate.  Of course for those of you who are local, she still loves your visits!

We are scheduled to visit her ALS Clinic next week where we will talk about what’s next.  We are hopeful that she is able to stay on the Bipap (bilevel positive airflow pressure) respirator which is “non-invasive”, for a long time.  If we can keep her throat and lungs clear, there is no reason we will need to consider the more invasive tracheostomy type respirator.  That is major surgery and we don’t want to go there if possible.  While communicating and eating is a bit of a challenge, we can manage life on the Bipap respirator.  I worry most about Phyl feeling alone and isolated.  Communication from you all helps keep her smiling!

Love to you all…..

John

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TO:  Phyl’s Friends and Family list….

Hi gang….  It is New Years Eve day and I’d like to ask you a favor.  Would you give Phyl a call sometime tomorrow to wish her a Happy New Year?  If you can…. please text in advance so she can let you know if she is able to talk and wait until after 10am (eastern time) as she often sleeps late.

I am asking because she is struggling a bit right now.  We were supposed to go to a friends house for New Years Eve dinner tonight but Phyl is not quite up to it.  Part of it is the weather and the difficulty getting into someone else’s house due to the steps.  But mostly it is her general health.  She is just getting over a stomach bug or something and then got her third urinary tract infection in 2 months.  This has affected her breathing and her overall strength.  And the cold weather really affects her.  We are looking forward to seeing our sons and grandkids again at the end of January to celebrate Jeremy’s 30^th birthday and then off to Florida for a month!  It won’t be easy but it will be great to be warm!   

In any case a short phone call (no long conversations) tomorrow would be great!   Or just send her a “thinking of you” email or text!  She is now wearing her respirator mask most of the day except to eat and for short conversations.  Talking is difficult but she is loving communicating on her new iPad! 

For me…. I’m feeling healthy and strong but tired as Phyl needs to have her legs moved for her a few times during the night to be comfortable, so there are no solid night’s sleep any longer.  Still, I feel grateful for all that we have (family and friends mostly).  I’m teaching my online classes which I can do while sitting on the couch next to her in her power chair (she is watching a video of our TWO granddaughters right now – the same video that Brian sent us this morning – over and over again)!  

A few of you have remarked that it seems difficult for me… but it’s really not.    I love taking care of her and when she smiles it lights up my day!  What is difficult and sad is watching her struggle.  I wrote an essay recently about the source of my own strength which if you have not yet seen it, here is is: https://changingthestory.net/2019/12/27/why-bother-with-god/.

In any case…. I’ll with you a Happy New Year and thank you for all of your support and love! 

Peace….

John

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TO:  Friends and Family ..

I asked Phyl to write a note to you herself.   It took her several hours of painstaking hitting her IPad keyboard with a pointer – and she did it.  I’ve pasted it into this email below.  As her body continues to fail, she struggles to maintain her positive attitude.  In her letter, I can feel the struggle.  She wrote the following, just for you….

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Dear Friends and Family…

Thanksgiving is upon us and it’s a wonderful time to reflect upon what we are grateful for. I know it might be hard to imagine that while dealing with ALS that there are things for me to be thankful for. I’ve had to let go of so much. In its place came an opportunity to feel the overwhelming love of family and friends. And it gave you all an opportunity to express it.

I am grateful for each and every one of you. I’m thankful for the walks around the neighborhood, the prayers, the outings, the problem solving to make situations work for me, the kisses and hugs, the food, the txt, the phone calls, my new bathroom (thx Dad), the chats on the deck (some serious and some hysterically funny) and the shoulders to cry on.

I am grateful beyond words for my incredible partner of 46 years, John. He is my hero, my rock! I couldn’t do this journey without him by my side. He has supported me with his love and his brilliance! He has done so much research that at times he knows more than the Drs! He is always ready and willing, with a smile, to help me in any way.

My heart is bursts with such love and gratitude for my amazing sons. They continue to give me so much joy and love every day. I count my blessings that they each have incredible partners whose love and support have helped them on this journey with me.

There is nothing that comes even close to the joys of being a grandparent! My heart explodes when I’m with them or thinking of them. They are the most precious little unique spirits. Our newest granddaughter, Lucia Tziporah Marine Gerber, was born on Nov 4th. I am so grateful that she is healthy and beautiful and a part of our clan!

I am thankful that there are machines and gadgets to make my life more doable. I’m thankful that I’m a slow ALS progressor!

This disease has made me “stop and smell the roses”!

I am thankful for so much in my life, but I am only human. I get overwhelmed at times with anger, sadness or fear. It is devastating to experience the loss of body functions as I have. That is why I continue to need you all to keep sharing your love and support!

Thank you all and Happy Thanksgiving!

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Back to my words (John)….

It is hard to imagine that our journey with ALS has been going on for 4 years.  Phyl mentioned that she is grateful that she is a “slow progressor”.  In the ALS community, this is relatively rare.  Most (about 75%) of the people who developed symptoms at the same time as Phyl have passed.  I recently had to put this record together for a doc.  Here is a summary of her disease:

• Summer 2015 – initial trouble breathing while running
• Fall 2016 – foot drop and weakness in left hand
• March 15, 2017 – first diagnosis of ALS by a neurologist
• August 28, 2017 – began Amylyx experimental drug trial at UMass Medical Center
• February 2019 – respirator used over night to help with breathing
• April 2019 – feeding tube surgery
• July 2019 – began to use the power wheelchair regularly
• October 2019 – respirator used part time during the day

At present, she has very little leg movement and some hand and arm movement.  This allows her to feed herself and drive her power wheelchair around.  We do regular stretching and range of motion activities in the chair to keep her muscles from tightening up.  Her hands cramp up pretty badly if they are used too much but otherwise she can position herself to be comfortable in the chair and bed.  She asks me to move her legs and feet regularly during the day and several times at night.  This seems to work and allows her some comfort.

Those of you who have visited recently know that she needs to use her respirator at least part of the day.  She can go for several hours without it so she can eat, chat and enjoy your company.  She takes a breath and then is able to say a few words or a sentence and then needs to pull in another labored breath.   But as soon as she is not active, the respirator mask goes back on.  She wears it in the van while we drive as well.  Although she can pull in a breath on her own, the respirator allows her to breathe more easily and sleep through the night. The next step would be a tracheostomy which we discussed with the docs at the Lahey ALS Clinic recently.   Phyl has a difficult time thinking about this as it would prevent her from eating and speaking.  She continues to hope for results from the experimental drugs she is taking.  I do believe they have significantly slowed down the progress of her disease because she had several gaps when she could not take the drugs and I could observe a much more rapid decline during those periods.   We have now stockpiled at least 6 months of the two drugs that I believe are helping.

Phyl does better when she has something to look forward to.  Our current plan is to enjoy Thanksgiving and Christmas with family and then (hopefully) spend all of February in Florida.  We’ve rented a handicap accessible house in Naples.  After February, we have no long term plans but Phyl loves springtime in New England and she will direct her friends and some folks we will hire to bring her gardens back to life.

I think I mentioned retirement plans for me in a previous email.  That has changed as UMass has asked me to continue to teach from home.  I can teach my classes online from now on and still be available at home to support Phyl.  So that’s the plan, for now.   We have a health care aide who comes in three times a week to help out and we’ll increase her hours as needed.

As long as I stay healthy, we will keep on keeping on.  I turned 68 years old last week (and sometimes I feel it).  But mostly, I am grateful that I’m physically strong enough to care for my beautiful wife.  I’ve been practicing living “one day at a time” for the past 20+ years through my 12 Step Program…. and it has prepared more than I could ever have imagined to be a caregiver.  My prayer is that I”m allowed to continue to take care of Phyl for a long long time….

Love to you all….

John

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