Phyl transitioned to the spiritual realm on June 15, 2020, after dealing with the symptoms of ALS for about 5 years. After two years of trying to figure out what was causing the symptoms of weakened muscles, she was diagnosed on March 15, 2017. For the past three years, Phyl asked me to keep her friends and family informed about the progress of her disease and our efforts to “live well with ALS” as she called it. The following is a record of my email messages and blog posts which were password protected up until now (Phyl didn’t want to read these posts). They are now public and I’ve edited them slightly and added some photographs to try to create a story. The links below provide a record of her courage and her resilience in dealing with what is always Continue reading Our Journey with ALS
TO: Family and Friends….
This is the letter I never wanted to write. Your friend, family member, and my wife of almost 48 years passed away peacefully last night, surrounded by her children, lots of flowers and Beetles music. Phyl just ran out of time. Her breathing has been getting worse for the past year and finally her lungs quit on her, even with the mask and respirator.
The past two weeks have been tough as she struggled to breathe and lost her ability to communicate. When she experienced air hunger, we gave her morphine which gave her some relief. Yesterday morning I helped her dress and took her into the dining room in her power wheelchair. She had three doses of morphine before she got comfortable, but this also made her groggy. We didn’t think she was aware of what was going on around her, but when she heard our grandchildren playing at the dining room table Phyl perked up and waived to them weakly.
We kept her comfortable all day with morphine. She seemed to perk up when her brother Howard call, but she slept most of the day. Her breathing became weaker and weaker all day and we knew she was transitioning when her oxygen level began to drop. Jake, Brian, Jeremy and his wife Sam, and I held her hands, rubbed her legs, talked to her, and cried until her breathing stopped altogether at 2:45am. It was a relief as she was suffering. She passed very peacefully.
Phyl will be cremated and we are planning a celebration of life sometime in the fall, hopefully associated with the ALS Walk-a-Thon in Look Park on Sunday, September 13. More on that later. We’ll also ask for donations in lieu of flowers etc. for the ALS Association of Massachusetts which has been very good to us. Here is the link if you would like to help;
I’ll tell you more in another letter, as I’m exhausted and can’t think.
Love to you all…..
After her passing…… a few more posts about John:
June 28, 2020 – The first two weeks
July 4, 2020 – Navigating Transitions
TO: Friends and Family…
My wife of nearly 48 years, your mother, sister, daughter, cousin, or friend is dying of amyotrophic lateral sclerosis. The person I have loved the most, hurt the most, and shared the most joy, the most challenges, and the most adventures with is leaving me – and I don’t want her to go. Phyl has been the center of our family, the hub around which our holidays and family events all revolve – and we don’t want her to go. She has been a good friend to many of you, some of you have known her for more than the 50+ years that I can claim – and you don’t want her to go. But for Phyl who is suffering emotionally and physically, who has lost so much – I think it time that we to begin to let her go.
As some of you know, the air hunger caused by poor (no) lung function has increased to the point that she is getting small doses of morphine most of the day to treat or prevent air hunger. While this reduces the anxiety of not being able to get enough air, it also makes her sleepy. She is sleeping much of the day and night. When she has visitors, she struggles to stay awake to listen to the conversation but after a while this makes her fidgety and anxious. Since she can’t talk and her hand movements are limited, she has difficult time telling us what she needs. We play a guessing game that seems exhausting to Phyl and sometimes she just quits trying to tell us what she needs. Sometimes she moans quietly (a few nights ago it went on for 3 hours) and we can’t figure out what is wrong.
She is on all liquid nutrition through her belly port, which also allows us to administer meds. We have a hospice nurse check on her twice a week and a hospice aide is coming in to give her a bed bath since she can’t sit up long enough in the shower chair for me to wash her without causing pain. And of course, her respirator mask can not be taken off for more than 30 seconds at a time. It is a miserable way to live.
As many of you know, I have been working for the past (almost) 5 years to help her live with this horrible disease. We both feel grateful for this time as about 80% of the people who developed symptoms of ALS at the same time as Phyl have already passed. During this time, I have searched for possible cures, gotten her involved in several experimental drug trials, acquired all of the adaptive equipment I could find to help her stay as active and comfortable as possible as she adjusted to her ever-increasing physical limitations. We have traveled to Arizona, Costa Rica, Aruba, Florida, and rented beach houses in Rhode Island several times. We have laughed and cried together, been frustrated and joyful together, and very often remarked about how lucky we have been to have such good friends and loving family. And most of all we have so very often thought how proud we are of our three sons and the men they have become. Phyl’s greatest pride and her legacy may be seen every day in how Jake, Brian and Jeremy interact in each other and within their own families. One of her friends wrote in an email last week…
“Life is hard. You just need to be so grateful that you have such a wonderful caring family. You did that! You should be so proud.”
I’ve read that quote to each of our sons and each time I teared up. “You did that!” You did that Phyl. You are the reason, our sons are the caring, thoughtful, and compassionate men that they are. On Monday morning, Phyl was uncomfortable and agitated. She had a really difficult night. Her breathing was labored, and she had already had her third dose of morphine to try to control the air hunger. I thought it was over and I texted Jake, Brian and Jeremy and asked them to come home. I got almost the exact same text back from each of them within minutes saying “I’m on the road in about 5 minutes… be there soon.” You did that Phyl….
I don’t want her to go….
But just as I have tried to help prepare her for each of her many loses, her legs, her arms and hands, and her ability to speak, I believe it is now time to help her prepare for next transition beyond this life. Yes, I do believe in “life after death”. I’m attracted to the term “devekut” from the Jewish mystical literature as the idea of “melting into the divine.” I wrote about my thoughts on the afterlife, the melting into the divine, in a recent blog post that you may have seen here: https://changingthestory.net/2020/05/26/the-afterlife/
Such a great article! We are all very proud to have been part of that study as I’m sure you two are as well. When we all leave this earth, we’ll think about what we accomplished and the legacy we leave behind. We’ll all have our children and grandchildren as part of our legacy and something to look back on with pride, but you two will have so much more as well. Phyl was one of the very first people to join the study and has stuck with it for so long. The amount of information you two have contributed to the study of this drug is phenomenal and will impact the lives of so many ALS patients and families.
TO: Friends and Family
Sound asleep… I feel, rather than hear a noise in the bed next to me as I awake abruptly to Phyl trying to get my attention. I pop up quickly and see her from the light given off by her ventilator machine. Phyl is pounding her chest…. the signal that she needs the cough machine. Running down the hall to find the cough machine which is still in the living room from yesterday’s use, I’m confused. She needs the cough machine so she is choking on her own saliva, but she has never woken up choking from sleep before. A new first… in 4 years of firsts. A new normal?
I must elevate her bed to a more upright position, remove her face mask from the ventilator, and hold the cough machine mask over her mouth and nose. Pressing the button to activate the forced air, her cheeks blow out like a squirrel with a mouth full of nuts and her eyes open wide in a look of surprise. Her chest heaves out as her lungs fill with air and then suddenly, the machine reverses and becomes a vacuum, drawing air out as she coughs to try to clear her throat. She nods and looks at me with expectation… do it again…. and once more I fill her lungs with air.
After a few of these violent breaths and coughs, there is a quick swallowing motion as she clears her throat of the remaining saliva, nods her head, and begins to relax. She is breathing again in those short desperate, chest heaving motions that say it’s time to put her ventilator mask back on. A smile of relief and her eyes get soft again. The fear that surrounds us both whenever she cannot breathe is released. Back to normal…..
That was this morning about 5:00 am…. a bit overly dramatic? Perhaps. Self-indulgent? Yes, okay… maybe. But at 6:00 am when I sat down at my laptop computer after breakfast to sip Earl Gray tea and start my day, I decided to share with you what “normal” is like in our household these days. I’m not looking for sympathy… really. I’m actually pretty grateful to be able to care for Phyl’s needs, whatever happens. And she was never in any real danger. If we did not have the cough machine at hand, she would have eventually cleared her throat of saliva… I’m pretty sure. It’s all part of the new normal.
I can’t spend too much energy thinking about “what if” anyway. My practice is to try to “live in the moment” or “one day at a time”. Anything else is too difficult. So, at 6:00am today, Phyl is sleeping and breathing easily with help from her AVAP. That’s an Average Volume Assured Pressure unit that blows air into her lungs and pulls it back out again. This portable ventilator keeps her breathing and she wears it all day and all night. She can take it off for 15 to 20 minutes if she is sitting upright, allowing her to eat and get her hair washed. But even this short time off the vent tires her diaphragm muscles so much that she is soon calling for “air now” with a weak voice and desperate look on her face. The new normal.
I thought I’d tell you about a “normal” day in this email. Yes, self-indulgent. You can quit reading when you get bored. This goes to a list of folks Phyl has chosen to share periodic updates. Since there are no pictures this time it will just be an email message. I think I need to do this for myself. I need to get it out. Lets see where it goes….
Most mornings begin in far less dramatic a fashion – with the whimpering of our dog, Riley. If I don’t hear him, Phyl will bang on the bed near me with her left arm until I wake up, although this may not continue much longer as her left arm is getting much weaker and it is not easy to move. While she is in her power chair, she has to ask me to position her left elbow on the armrest for her because she cannot lift it herself. Her right hand which is used to type onto her iPad to send emails, comment on Facebook, and “speak” (if she types a sentence the voice in her iPad will say it out loud for her)… this right hand that allows her to be part of the world is getting weaker too. She can no longer use it much after about 5:00pm as it gets tired. This worries her a great deal.
Anyway, back to Riley. He whimpers for his food each morning sometime around 6:00am. I get up to feed him as he won’t quit if I don’t get up and this annoys Phyl – so Riley gets fed. I’ll have my cereal too and read the newspaper each morning at the dining room table. The news is all bad. How many people died yesterday? More important for us, how many are being treated for COVID 19 at Cooley Dickinson Hospital in Northampton, and how many occupy ICU beds (the answer was 5 ICU beds are occupied this morning). I assume if we need an ICU bed today it will be available.
It’s a hell of a way to start the day, but that’s the new normal. Although I’m really not sure we want access to an ICU bed. Phyl and I discussed what we will do if one of us gets sick. If I need to go to the hospital, we are in trouble. There is nobody to stay with Phyl because of the virus. So, she will fake lack of breath (easy for her) at the same time as me and we’ll call 911 for an ambulance for both of us. I know, it’s not much of a plan.
If she gets sick (which is more likely) then we have a decision. We were on a video call with her support team at the Lahey Hospital ALS Clinic this week. I asked her neurologist which does she think would be a better plan if Phyl got COVID 19, based on all that she knows about ALS. Would it be better to be intubated (a tube down her throat into her lungs) and forced air ventilated in a hospital bed, breathing perhaps, but alone,… with nobody to help her get to the bathroom, or scratch her head, or reposition her left hand as needed? Or would it be better to be at home on her current, less invasive ventilator and be cared for by someone who loves her more than life itself? The neurologist could not answer. I didn’t expect she would. But when the news report says that 80% of the people intubated and vented in ICU beds in NY City have died, it seems to be an important question. If aggressive hospital care results in a 20% survival rate in people with healthy lungs, what are the odds that someone with ALS will survive COVID 19? And where would you want to die if that is the most likely outcome? The poor neurologist didn’t answer. I don’t think its overly dramatic to be asking these questions. They keep me awake at night. The new normal.
Phyl and I have not decided what to do really. There is a strong pull to trust the medical people and the hospital care they provide. But the thought of her being alone in an ICU bed haunts me.
Before COVID 19, I would not be counting ICU beds at our local hospital while reading the newspaper. I would have my breakfast at the dining room table and read the latest gossip about the Red Sox. I miss the Red Sox….
I often get an hour or so in the morning to do whatever I want before Phyl calls (she has a door bell she rings when she needs me) although it is getting more difficult for her to press the button on the door bell even with her good right hand. When I tuck her in at night I put two door bells on the rolling cart next to her bed that holds her ventilator and remind her that all she has to do is knock one of the door bell buttons on the floor and I’ll hear it crash. We both smile as this happens more often than not.
During “my time” in the morning, I sit in my office and often read something spiritual. Lately I’m reading Tielhard de Chardin’s book, Hymn of the Universe. I love his writing about the evolution of humankind as the emergence of a universal consciousness which he equates with a Christ (translated as that which was blessed by God) consciousness. Long before Father Richard Rohr wrote about this in his more recent book, The Universal Christ, Tielhard de Chardin noted that Yeshua (Jesus) the man, was not the same as the Christ consciousness which pre-dated the birth of Yeshua. He contends that the “incarnation”, that is the divinization of the material world, has been happening since the beginning of the universe and continues today with the birth of every new baby (have you seen pictures of our new granddaughter Lucia – she would make you believe in the divine). Anyway, the readings may be followed by a meditation or perhaps writing in my journal. Today I’m typing this note to you…. waiting for the doorbell to ring.
When it rings, I jump up to see what Phyl needs. Often it is just to remove some of her blankets. Sometimes I need to take her left arm out from under the covers or move one of her feet to be more comfortable. She lies in bed in the morning and watches the bird feeder outside our bedroom window. And eventually she ring the bell and sticks her thumb out (her right hand of course) like she is hitch hiking and points to the bathroom.
The process of getting her out of bed is a bit awkward and I won’t describe it. It’s not very graceful. But once in her power chair, she has a bit of independence. She drives herself to be near the toilet, and I unhook her respirator tube from the mask, lift her onto the toilet, and reconnect her air tube. She can still sit up on her own, but I have to lift her head off her chest, as her neck muscles are no longer strong enough to lift her head. During our Clinic visit this week, they told me about a neck brace which I ordered on Amazon. It should be here in a few days and will help hold her head up while on the toilet. She is okay in the power chair because it tilts back enough for her head not to fall forward. The new normal.
Next, we move into the kitchen for juice and suctioning. As she can’t easily swallow any longer, saliva builds up in her mouth. The choices are trying to swallow and perhaps choking, drooling down her chin, or suctioning. All three are part of normal for us. But she prefers the suctioning. She indicates with a motion of her right hand moving away from her mouth, which I recognize as “time to suction.” The machine is kind of loud but is effective as a tube is put into her mouth and vacuums out the saliva. We do this 10 to 15 times a day. The good news is that she doesn’t need it at night! Some folks with ALS need nighttime suctioning too. We both are grateful to be able to sleep through the night most of the time but are aware that the new normal might include suctioning at night as well.
Back to the story of our day…. the next step is washing her face and chap stick for her lips and then I deliver her iPad so she can check to see what her friends (and especially our grandchildren) are up to. Every morning she is greeted with messages from friends. Sometimes it’s just a note saying that you are thinking of her. About half the time she gets a video of Brian’s two girls, Elena and Lucia, since they have been up for several hours already. A two-minute clip of Elena dancing around the house brightens up Phyl’s day immeasurably. She lives for these messages, so please keep them coming (email, text, video… whatever works for you). While she is “joining the world” online I make her breakfast and prepare her meds.
Damn… I’ve written three pages in MS Word and I’m only up to 9:00 am in the morning. As I said, stop reading when you get bored. Our lives are not really all that exciting.
Back to breakfast…. she loves bacon! And for the past few days it has been matzah brie to mark Passover. She will eat her meals in her power chair in the living room. If it is something she can eat on her own (I have to feed her anything that requires a spoon or a fork as she can’t lift these to her mouth any longer) I’ll have another cup of tea while she eats, check into my class on my laptop (I’m only teaching one class this semester online so it’s pretty easy) and I watch her eat – in case she chokes. She chokes on her food during about 50% of her meals. There is really little I can do, but I will jump up and rest my hand on shoulder to reassure her that I’m here while she tries to clear her throat. She is not really in danger, but it is pretty scary nevertheless. It may take 5 minutes of trying to cough, gaging, trying to breathe, cough, gag some more etc. When it slows down a bit, she may pound her chest indicating that she wants the cough machine which does the final clear out of her throat. Then a weak smile and a few more bites of food.
She is really not eating much but I try to make sure she has three meals a day. I have a concentrated liquid “food” that I can put directly into her stomach with the feeding tube and a syringe. I always feel better when I get a bit of Kates Farm Liquid Food into her once a day, but she prefers to try to eat real food. She tells me that when she goes to bed at night, she dreams about eating a huge meal. But a few bites of “real food” sometimes fills her up. I know she is not eating enough but I’ve decided not to bug her about eating more. She has enough problems.
So, our day goes on. We have an aide that comes in three times a week to help with household chores in the morning. She also stretches Phyl’s arms and legs, and massages her hands which are curled up into a claw. She can no longer open her fingers, which makes typing difficult. She uses the iPad pencil on the screen, but it is getting more difficult to hold. I got her a head mouse which she is learning to use. Movement of her head in any direction causes the mouse cursor on the screen to move. I installed “dwell” software so if she holds the mouse over something on the screen it “clicks” for her. She doesn’t like it but will need it soon as she loses use of her right hand and arm. The new normal.
While her aide is here, I can go shopping, out for a short bike ride or perhaps work on my class. I’m preparing my summer online classes now, which I’ve taught for quite a while so it’s pretty easy. In the fall and spring semesters I have two classes each term and they are now fully online as I’m not going to campus any longer (well, nobody is thanks to COVID 19 but that has been my plan all along). So, I’m getting my fall and spring classes ready now. I love this creative part of teaching and yesterday I took two online workshops on how to do it better. I can’t be too far from Phyl in case she chokes so I sit on the couch in the living room and she is in her power chair. If she needs me, she just signals.
Phyl often reads or listens to music in the afternoon. If the weather is good, she will go out on the back deck to sit in the sun. On nice days, we try to walk Riley around the block. It is difficult for Phyl since when people meet us (at a distance of course) they want to greet Phyl and chat. She is wearing her respirator mask and can’t respond, so I try to manage some small talk (I’m not very good at it) and interpret Phyl’s expressions as best I can. It is awkward and I pray that nobody is out while we are walking the dog. But Phyl’s eyes say that she is happy to see our neighbors while we go around. She is a much better person than me… but you knew that.
Eventually she will have something light for lunch, soup or lately it has been matzoh with gefilte fish. Perhaps more choking or maybe not… and the day goes on. She is on her iPad most of the day communicating with friends and messing about on Facebook. I have tried to provide some sort of shared activity, but it is hard. We avoid television during the day.
Some afternoons a friend will stop by to sit on the deck, but this is rare as we are all social distancing and it’s a bit dangerous for Phyl. We’ve had video meetings on the computer lately with both friends and doctors. Last Saturday morning, Jeremy set up a video chat for us with his brother’s and their kids. Phyl smiled through the whole thing! She can’t participate much since the iPad talker takes time to type out a sentence and she is wearing her face mask, but she tries.
Most afternoons are for reading and napping. She sleeps a lot during the day, as she is very tired most of the time. This gives me a chance to work on my classes while watching her sleep. I can’t go out and leave her alone as I did last summer so a neighbor comes by to walk Riley almost every day. Lately, we have been going through our old photo albums selecting pictures of the two of us over the past 50 years. There are a lot of pictures! I take a picture of the old photograph she selects with my digital camera and load it into my computer. I’m planning on putting them onto one of those revolving picture screens so we can look back over the years. We talk about all of the events of our life together and how joyful it has been most of the time. Yes, some ups (thanks to her and our kids) and downs (my fault for sure) but mostly 50 years of joy. The highlights are the kids and grandchildren of course. We both often note how lucky we have been.
Looking back over the years has given me some perspective. Yes, it is true that we are struggling right now (Phyl much more than me of course). She is frustrated that she can’t do anything useful around the house and she misses our grandchildren terribly. She feels isolated, scared and frankly cheated. For the past few years, there was always the hope of some miracle cure for ALS but nothing that is in the works now is designed to restore motor neurons. The treatments in research are all about slowing down the progress of the disease not restoring capacity. Phyl doesn’t admit (maybe she does but she won’t say it) that there is little hope that she will improve. I suppose there is a possibility but not likely.
We both know how this ends but we are not talking about it much. The big question is do we try to extend her life as long as possible with a tracheostomy and a permanent ventilator. This may not even be a possibility if she gets sick from the virus. So I’ve been thinking about death a lot lately. Even before COVID 19, I had 3 friends die this year who were my age and quite a few acquaintances pass on. So, it is on my mind.
I’m not personally afraid of death, as I know it is both an end of something and a beginning of something new. Consciousness continues even as the physical body is no longer functional and I’m kind of curious about what’s next. But Phyl has always been afraid of the great unknown that is beyond this life. We talk about it sometimes, but it is difficult for her to talk about. I think it is possible to prepare for a good death. I’ve read a lot about this lately and feel that I can accept whatever comes along for me… but who knows? Maybe I’m kidding myself. In any case, I need to stay healthy for now to take care of Phyl!
And before we know it, it is 5:30pm and we can watch the BBC followed by PBS news (all bad). I make her dinner while she watches the news. We are still getting two meal deliveries a week from her friends! She eats first so I can feed her and then I eat. This is followed by a few hours of some Netflix or Amazon Prime TV series. Lately she’s enjoying Death in Paradise, a series about a stuffy British detective on a tropical island in the Caribbean. We both like the scenery but I often take this time to work on my classes. I can mostly fit my class work around her schedule. We’ve been finishing the day with the old 1970’s series, All Creatures Great and Small, about a British veterinarian in a rural practice in the midlands region of England. It is simple and sweet. Just the kind of show to watch before bed!
Our days are quiet and pretty boring (for Phyl). I’m fully occupied (unlike many people today) with my online teaching, being a full-time caregiver, keeping the house running, and taking care of my Mother’s finances (thank goodness my brothers do most of the work taking care of Mom). I am pretty much non-stop as soon as that first door bell rings! It’s more difficult for Phyl as she doesn’t know what to do with herself during the day. One day is much like the last….and (hopefully) the next – as we really don’t want any excitement. We are ready for bed about 9:30 pm. I make up her nighttime medications while she watches Rachel Madow.
Preparation for bed is another juggling act (not very graceful again). I’m not very good at brushing her teeth or getting her into her pajamas, but eventually I’ll lift her into bed and get her legs and arms in a comfortable position for the night. She can’t move so this takes a while to get right. We use an adjustable bed and three different wedges and memory foam pillows to make her comfortable. There are generally several adjustments before she falls asleep, so I am up and down a bit until she settles. I’ll read for a while and then fall a sleep. It isn’t a sound sleep much of the time as I’m looking up to check on her regularly. Oh well….
So, we are back to the beginning – morning again. We are living 24 hours at a time, so I guess that’s the end of my story for today. It is a long one….. if you made it this far, thanks.
And please do keep texting, emailing and communicating in whatever way possible with Phyl. She needs you more than ever…..
Love and peace….
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…..
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 30th 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!
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….
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!
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:
Fall 2015 – symptoms began to appear (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….