Elena is entertaining her Mom and her two  Grandmothers with Jake and Brian in the background

Hello family and friends….  John again – reporting “from the beach.”  We are spending two weeks in southern Rhode Island (we head home tomorrow) with family coming and going and most important spending time with our grandchildren!  We are a few miles from East Matunuck beach, which is a state beach (cheap parking for us old people) and beach wheelchairs available which can be pushed on the sand, making the beach access possible for Phyl.  Transfers from the power wheelchair to the beach chair take a bit of maneuvering (I haven’t dropped her yet) and then we push her down to the water and drop her into a chair in the sand where she can feel the sand on her toes and watch our grandchildren play.  We’ve had at least one of my sons around most days to do the heavy lifting but I can do it if we are alone.

She loves the beach, even though it has been frustrating, since she can’t actively play with the kids.  Her arms are too weak to dig holes in the sand this year and she is stuck sitting in her chair.  Watching Noah on a boogy board both delighted and frustrated her as she always loved playing in the waves herself.  Still, she can interact with the kids verbally (she has a microphone and amplifier to project her voice which is weak at times) and the kids often try to include her in their games.  This is the third time we’ve rented a house in southern Rhode Island since Phyl was diagnosed and she notices the things she could do the last time and that she can’t do any longer.  Last year she was walking slowly with a walker or hiking sticks but there is no more strength in her legs.  She has an amazingly bright attitude and huge smiles especially when around Elena, Noah and Colin but then she may fall apart in tears when we are alone.  It is heart breaking and wonderful all at the same time.

The house we rented has worked out – mostly.  The ramps to get in and out are good but the bathroom is too narrow for us to get her to the toilet.  We bought a bedside commode which works well and there is an outdoor shower that I’m able to get her in and out without too much trouble.  As always, we make things work.  Phyl has been accepting about all the accommodations and adjustments we have to make to get her from place to place but it is getting more difficult.

One night, we went to Providence with Jeremy, Sam, Belita, Brian and Elena to watch a Capoeira performance (a Brazilian martial art that Belita does – when she is not pregnant) and then Waterfire (a monthly event in which they light fires in the river).  Lots of people, music, and celebration.  We were having fun…. and then it rained – hard!  Sam and Jeremy got Phyl to the pick-up spot in her power chair while I tried to get back to them with the van in a huge traffic jam.   A kindhearted lady gave Phyl an umbrella, right out of the blue.  It was a mess…. and we all got wet.  But Phyl thought it was an adventure, even though she got soaked!

One evening we were on the beach for dinner (Food Truck Night in Narragansett) with Belita, Brian, Jake and the kids.  Brian and Jake got Phyl down to the beach in a full body sling since there was no beach chair and I got her some amazing blackened fish tacos from one of the trucks.  The clam chowder was great although Elean ate most of mine!

It was a nice night until Jake spotted the lightning.  Brian and Jake threw Phyl in the sling and hauled her back to the power chair.  We just got her into the van just in time, but I think Brian and Jake got wet.  Phyl and the kids thought it was all great fun!

Last night Phyl took our sister-in-law Jen, our niece Corey, and our grandson Noah to a local summer theater to see Saturday Night Fever (nope, John Travolta was not playing Tony but it was a great performance).  I took them to the theater in the van and helped Phyl navigate the accessibility ramp at the theater and get her into seat.  Jen and Corey somehow got her out of the crowded theater after the show (without dropping her).  They all had a blast, especially 7-year old Noah.  When they got back, Jake, Brian, my brother Dan and I had prepared a lobster and sweet corn dinner for us all.  Life on the seashore – Phyl loves lobster!  I have to get the lobster meat out of the shell for her as she has little strength in her hands.  Yet another small thing that she misses, but the lobster was wonderful.

Most days are less eventful.  Before Jake, Noah and Colin arrived to spend a week with us (Shannon had to work) we were alone.  We would have breakfast on our deck, plan our day together, often meditate, go to the beach to read (or meet up with Belita and Elena if Brian had to work), come home for dinner and hang out with a movie or reading at night.  Some days would include a short trip to a farm stand or fish market.  This is pretty much the same schedule we kept in Costa Rica and Aruba where we spent our last two vacations.  After 46 years of marriage, we are happy just being together, reading and sitting on the beach but having the kids around was really special.

I loved getting up early (to work on my online classes) while Phyl slept.  I would be greeted by Noah and Colin who always arrived early to have breakfast with me.  Phyl would get up and have breakfast in her chair out on our deck and we’d plan our day.  Yesterday we had a big gang on the beach with Dan, Jen, Corey, Brian, Belita, Elena, Jake, Noah, Colin and Belita’s parents who were visiting from Colorado.  Phyl is in her glory surrounded by family.  The best part of the vacation was having our grandchildren so nearby!  Phyl always has a huge grin on her face when the kids are around.

Today we are headed to the beach one last time before Jake and the kids need to leave.  We’ll pack up tomorrow and head back to our regular lives.  My classes start soon.  I’ll be teaching one class on Tuesday and Thursday afternoons on campus.  Phyl has organized for friends to be with her at those times.  My other work is all online, so I can do it from home.  I mentioned previously that I’ll retire in May so I can be home full time.  I suspect there will be a post-retirement appointment organized for me so I can teach a few classes online but it will all be from home.  We have a caregiver come in three mornings a week now and our Long Term Health Care Insurance will pay for more if we need it.  Phyl will stay busy because she has an amazing group of friends who take her places in the van.

We removed the front passenger seat from the van so Phyl can roll her power chair right in place and sit next to the driver.  She is pretty independent in her chair as long as there are no curbs or steps.  The power wheelchair is not as “zippy” as her mobility scooter, but the chair is more comfortable and can be put in many positions to rest her back and bring her legs up.  She spends most of the day in her power chair (thank God for Medicare as the damn thing was really expensive)!  And while she is on a respirator all night, her breathing is still good enough that she can get through the day without it.

We don’t like to think to much about the future, so we’ll keep living one day at a time.  We know that no one can predict the future.  The prognosis for anyone living with ALS is not good, but we know that a prognosis is not a prediction.  Everyone who has this disease experiences something different.  Most have a much more rapid progression.  A few are slower.  But it is always steadily toward less and less ability to control your muscles and we have certainly experienced the constant loss of ability.  At the same time, we have gained much from of a community of friends and of course family who show up and share their love and help.  We both feel blessed and know that many people with ALS are not as fortunate as we are…

Love to you all….

John

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TO:  Friends and Family

FROM: John

In my last update on Phyl and ALS, we had just returned from Aruba and were waiting for our new bathroom to be completed. Well, it is!  And what a difference for Phyl to have access to the facilities on her own!  She can roll her scooter right into the shower and hop (well, not really hop) onto a shower chair.  And the commode seat is heated (which if you have not ever tried one you don’t know what you are missing)!  Of course, the entire bathroom is also quite beautiful since she designed it herself.  In fact, the contractor’s wife looked at a picture and asked if we had a professional do the design…. nope, just my very talented wife!  And we are so happy that it is done!  Makes life much easier….

I also mentioned last time that we were on the verge of getting a “bipap”, which is a respiratory assistive device.  Since her diaphragm muscle is being affected by ALS, she can’t take a full breath or exhaust all of the carbon dioxide.  Well it took some getting used to but she now wears a face mask all night connected to a machine that helps her breathe better.  While this sounds rough… in fact it has made a huge difference in her energy.  Before we got the respirator, she was experiencing a serious fatigue all day even if she was just sitting on the couch.  While she still tires quickly during the day, her energy level is much better in general (not great…. but better).  She is able to go out with friends and of course drive her “souped up” golf cart in the fields by our house (now that the snow is gone) to walk Riley our dog.

Now that the weather is nice, she tries to get out as much as possible.  Her friends continue to show up and take her places (and bring us food – thank God)!  But she can no longer drive her van so she needs more help getting around.  This has added to her sense of being stuck in the house.  Isolation is a problem, especially when I have to teach and we don’t have an aide scheduled to be with her.  On a related note, we published a blog on “withdrawal and isolation” that most of you have probably seen.  While I stole it from an author I admire, Phyl said it expressed her feelings and wanted to share it.  If you have not yet read it (and are willing to have your heart broken), you can find it here:

https://changingthestory.net/2019/03/30/alone/

So, whats new?

On April 22, she will have a stomach tube inserted (minor surgery) so that someday we can feed her directly with liquid supplements.  At present, she can chew and swallow just fine.  But one of the things ALS steals from you is the ability to chew and swallow without choking and without the stomach tube (officially called a PEG or percutaneous endoscopic gastronomy tube) she would not be able to eat.  She has already lost way too much weight and the PEG will let us provide nutritional supplements.  I think she is most interested however in avoiding the terrible taste of her experimental drug and just shooting it directly into her belly.  Frankly, we don’t expect to have to use the tube for a while but they won’t do the surgery if we wait too long.  Her breathing is already compromised and it is dangerous to put someone under anesthesia if their lung capacity is less than 35% of that expected for someone her size.  Our last lung capacity reading was around 45% and it continues to drop, so we scheduled the surgery.  She will come home on Tuesday, April 23 in the afternoon and you are welcome to call to see how she is doing afterwards.

And phone calls always help!  I mentioned in my last email that her voice is getting weak (it comes and goes) but we went to a Speech Therapy Center in Boston to get some help.  She is capturing her voice in short phrases on a computer so that if she loses the ability to speak someday they can set her up with a communication device that will allow her to type phrases and have it “speak” (hopefully) with her own voice.  The Massachusetts ALS Association (the folks sponsoring the fundraising walk in May) sent us an amplifier which helps her be heard.  Okay…. here is something funny.  I’m writing this message in my office and Phyl just yelled at me from the living room asking what I want for dinner.  Yes…. she yelled!  As I said, it comes and goes.

So life goes on…..

We are planning on spending a few weeks near the beaches in Rhode Island in August and hopefully a month in Florida next February.  It helps Phyl to have something to look forward to (preferably including a beach)!  And of course we love it when the kids and grandkids show up!  Phyl will keep you posted on Facebook with pictures of the family.

And I have finally picked a retirement date.  I’ll teach one class next fall which means I’ll be on campus Tuesday and Thursday afternoon.  We’ll have an aide scheduled for these times.  But I need to be home more so she is not alone. She has difficulty transferring between the scooter and the chair or couch and we can’t afford to have her fall.  I help her dress and get her meals and meds as well, as her physical abilities continue to decline.  I am grateful that I am able to do this….

I have been reluctant (up until now) to talk about myself as I feel so damn fortunate to have a job that is flexible and the financial resources to provide Phyl with what she needs (with help from her Dad).  But many of you have asked me about how I’m doing….  Thank you for asking – and as you know I don’t like to talk about myself (except with my brother Dan who is a great listener – him I need).  Nevertheless….

I decided to write about my thoughts and feelings in an essay which I’ve shared with other caregivers of PALS (people with ALS).  There is an online community of CALS (caregivers of ALS) who support each other answering questions and sharing experiences, frustration and understanding.   I wrote this essay with this group as mind as the audience but Phyl read it and said it was okay to send to you as well.   She thought it was “too spiritual” for her, but expressed who I am fairly well.  Anyway, you can find it here if you’d like to read it:

https://changingthestory.net/2019/04/12/caregiver-suffering/

I don’t think this one will “break your heart” although is is about suffering.

Not sure I want to end this email with suffering, so I’ll just remind you about the Walk-a-Thon

Phyl will be the “keynote speaker” (although I might have to read her speech depending on her voice that day).  She was honored to be selected to make the opening remarks before the walk begins.  She has lots of friends and family planning on walking with her on Sunday, May 18.  If you want to join us, here is the info on the walk: http://web.alsa.org/site/TR?pg=entry&fr_id=13523

If you are joining us, please be sure to “join her team” (you don’t have to donate money join).  Click the red “join our team” button here: http://web.alsa.org/site/TR/Walks/Massachusetts?team_id=376865&pg=team&fr_id=13523

Phyl is the top fundraiser so far!  If you can’t walk but want to donate, just click the “donate” button by her name on the link above.  And please try to be patient as the web page is not “user friendly” but it does work!

So that’s our story for today…..  oh yes, one last thought.. (well two);

1. If Phyl comes to mind while you are going along through your busy day…. just call!  She may not be able to talk or may be out but leave a message.  The fact that you thought of her makes all the difference in the world.
2. If you are local and you are heading out to an event…. please think about inviting her along.  I guarantee you that it will come with “complications” (like having to drive her accessible van) and she may not be up to it – but being asked makes her day!

Thanks to all of you for your support and love….

Keep smiling and living life – Phyl and I are doing just that!

John

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TO:  Family and Friends

While it hasn’t been that long since my last email, Phyl asked me to let you know about our trip to Aruba and our most recent visit with her neurologist.  Of course, many of you saw the pictures on Facebook of Phyl floating in the Caribbean.  My greatest joy was watching her float (with a noodle for support) and the HUGE smile on her face in the beautiful blue waters off the beach.   She did a bit of snorkeling and was able to see lots of colorful fish.  When Phyl is in the water, she says she feels almost “normal”.   We were there for 3 weeks and found a beach almost every day!

Of course, getting her to the water was a trick.  We had to find beaches where the water’s edge was close to a hard road where she could drive her mobility scooter.  We found several that worked.  She drove to the edge of the sand and then with my help she could move her legs just enough to shuffle down to our beach chairs.  We did the same getting her into the water.  Getting out was more difficult as it was a bit of an uphill climb.  So I got into the water and she climbed on my back.  I carried her back to the chairs (and only dropped her once).    I also had to break down her scooter and lift it into the back of the rental car several times a day.  I surely missed our van with the retractable ramp that she can drive her scooter right into!  Frankly, I think I”m too old for all this lifting (when we got back to Boston, Jake threw her on his back and carried her up and down the stairs like a rag doll)!

Anyway…. great food, sun and warm weather were a real treat.  She struggles with muscle tightness in the cold although as I am writing this, Phyl and our niece Jess are out on her golf cart walking the dog in the fields by our house.  The cart goes through the snow pretty well!   For the past two winters we have been able to stay warm in Costa Rica and Aruba.  I don’t know if there will be another big trip in our future however as getting around is getting difficult.  We do intend to visit her Dad and Florrie in Florida next month which is much less of a daunting trip.

Back on the home front, we’ve had contractors in the house for the past few weeks remodeling the downstairs bathroom.  In another 2 weeks or so we will have a drive-in shower and fully accessible bathroom!  This will make life MUCH easier for Phyl as she can’t get upstairs any longer and getting in and out of a tub is difficult (and a bit dangerous).  I’ve been taking her to neighbor’s houses for her showers while the bathroom is being remodeled!   And the ALS Association is loaning us a rolling shower chair.

So… speaking of the ALS Association.  You remember last year when Phyl raised over $8,000 for the Western Mass ALS Walk-a-Thon (she was the second highest fund raiser for the event).  Well, we are doing it again.  First thanks to those of you who have already signed up or donated and for the others, here is the link if you want to help out:

1. To sign up as a team member and joining us on the walk (May 18 in Northampton) use this one: Join our Team – Phyl-in-Tropics.
2. And if you want to donate but can’t be there for the walk, use this one: Donate to Phyl’s Team

It is a bit confusing but the money all goes into her contribution to the Massachusetts ALS Association.  We are big fans of the Association as they helped to fund the experimental drug trial she is on.  In our visit with her neurologist this past week, we agreed that the drug has made a significant difference slowing her disease progress.   That said, the disease is indeed getting worse.  As I mentioned in my last email, her lung capacity took a big drop over the past 3-6 months.  She is now about 50% lung capacity and this triggers a couple of things.

First, we are getting a non-invasive breathing assist machine called a Bipap.  It is a mask she can wear while watching TV or at night to help breathe in good air and most importantly expel carbon dioxide.  Research shows that the Bipap extends the usable life of her diaphragm, gives her more energy, and may help her sleep at night.  The other thing we are looking at is a feeding tube that will be inserted in her belly.  This is to help provide nutrition as she loses her ability to chew and swallow.  It is not needed now, but they want to do the surgery while she is strong and healthy.  We have not made a commitment to this yet, but it is in the near future I suspect.  We are seeing another doc for a second opinion but this is what everyone recommends.

So, while we love her neurologist at UMass Medical Center in Worcester, this hospital is primarily a research facility.  We went there for the experimental drug trial and to get close to Dr. Robert Brown who everyone says is the top ALS researcher in the nation (and also a really nice, grand-fatherly like man).  But we will be going back to Lahey Clinic in eastern Mass for regular support and care from now on.  Lahey is known for their supportive care team and they do no research.  We were impressed with them when Phyl was first diagnosed but at the time really wanted to get into a research trial so we switched over to UMass Medical.  At this point, we need palliative care so its back to Lahey.  The good news is that we can visit Aunt Helen, Jake, Shannon and our grandsons when we go to eastern Mass!

We are not sure why her rate of muscle and diaphragm loss has increased so dramatically but Dr. Brown thinks it may be related to her weight loss.  She has been slightly queasy on and off for some time and is eating less.  She is just not hungry and has lost 17 lbs over the last year (and 8 lbs just this past 3 months).  So after our visit to UMass Medical, she made a commitment to get fat!  She dropped the dairy-free and gluten-free diets and we are back to bread and ice cream!  We eliminated a couple of the vitamins, supplements and drugs that might be causing the stomach problem and she will see her GP soon to investigate.   We also think the folks at Lahey Clinic will be able to help.  This is pretty scary as there is a direct relationship between weight loss and muscle loss in ALS patients.  So we have a new mission….. fattening her up!

Oh yes… one more thing.  If you call her and she seems to have trouble talking, please ask if she wants to talk at another time.  With the loss of lung capacity, talking is an effort sometimes.  You might even text her ahead of time before you call to see if she is able to chat.  She LOVES talking with you all, but sometimes can’t find her voice.  We are working on a computer talking program that she can type into and talk for her, which will be needed someday.  This isn’t a problem all the time (last night she yelled at our dog and surprised me with the strength of her voice).  And she and Jess just returned from their adventure in the fields and she yelled down the hall to tell me how much fun she had!  But it is a concern and it would be good if you were aware.

Damn…. this all sounds pretty depressing doesn’t it?  Honestly, we are pretty happy much of the time.  We love doing things together even though our options are limited.  We have good friends (last night we were at the Cunningham’s house for dinner with friends and Phyl had a wonderful time).  She has lots of friends stop in to say hello or go out for coffee (Phyl is still driving her accessible van).  Her friends deliver meals to us twice a week (since I am doing all the cooking this is MOST appreciated).  Our family continues to show up and and be attentive (Jeremy and Sam will be here next weekend and we visited with our other two son’s families just recently).  Our son’s call their Mom regularly, Dan and Jen stop in to say hello at least once a week, Jess is doing a puzzle with Phyl right now, we will visit with Milt and Florrie soon, my mother was here for Christmas, her friends call, and everyone is thinking of her all the time.  I know this is true.

We are dealing with a lousy situation but I feel grateful that we have the support and the resources to make Phyl’s day as comfortable as possible.  We have an aide come in three morning’s a week and this will increase over time.  Thank God we bought her a Long Term Health Insurance policy (just one year before she was diagnosed).  This will help cover home health care and nursing visits if needed for the next 5 years.  It was expensive but without it, we would be in trouble.  And I am looking at retirement next year.  I’m off for the summer but I committed to teach next fall – but not the spring semester next year.  Nothing official yet but I’m phasing out of my campus work and will probably continue to teach online, which I can do from home.  My first job is caregiver for my wife.

So… that’s enough huh?  Sorry if its a lot but that’s the deal… we try to live one day at a time and accept life on life’s terms”  And of course we try to remember to be grateful for all of the gifts we have and most of all for you, your love and your support.

Love to you all….

John

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TO:  Friends and Family…

It has been two months since my last update on Phyl and there’s not much new on the ALS front.  Phyl continues to lose muscle mass, strength and physical abilities slowly.  She is using her mobility scooter in the house pretty much full time now.  She had been using a rollator and trying to walk a bit but that seems to be over. We got a new power wheelchair delivered but she is not wanting to use it until it is really needed – and she loves her scooter.  She can transfer from the scooter to chair or bed on her own, but I can see the day will come when she will need more help.  She took a bad fall about a week before Thanksgiving and it scared us.  Nothing broke (this time) but with her osteoporosis worsening, falling could be really bad.

Yesterday we had our regular 3-month visit to UMass Medical for strength and breathing tests. After the last visit we were pretty happy as the there was little change from the previous visit.  Yesterday’s numbers were not so good.  Her muscle leg and arm strength measurements were down and her lung capacity had dropped significantly.  We were disappointed but not really surprised as we could both tell things had gotten worse over the past few months.  Phyl wanted everyone to know and she is willing to talk about it if you want to call.

Since she rarely complains, it is hard for you to know how difficult daily living has become for her.  Every move of her body requires a plan and a decision – and is hard.  Every time she can’t reach her cell phone, pick up something heavy, zip up her jacket, open a jar etc. is a new disappointment.  I prepare her meals and put them in front of her and sometimes have to cut things for her to eat.  I often help her get dressed as her arms and hands are weak.  She has to type on her computer with one finger as her fine motor skills are gone in her hands.  And her voice is getting weaker as she loses lung capacity.  She is dutifully reading sentences into a computer program called Model Talker.  This is a voice capture program that will recreate her voice, so if the day comes when she can’t talk and needs to type into a computer to communicate, it won’t be a “computer voice” that is generated but her own.  I know this is hard to hear, but she wants you to know.  And while every day there is some new research finding on ALS, nothing is near enough to be of help at this point.

We tried a Parkinson’s drug called Ropinirol which her doctor said might help and was available for off-label use.  We were excited about its potential as cell (lab bench) studies indicated it was a possible help even though it had not been tested on ALS patients.  Phyl wanted to be the first to show it worked – but after a few weeks the nausea got so bad and she was losing so much weight that she had to stop the drug.  It took about 3 weeks off the drug for her appetite to return – but she is eating well again now.  We know that no drug or treatment available today will reverse or stop the progression of the disease, but we continue to look for ways to slow it down.  Amylyx, the experimental drug she has been taking for over a year is helping and this continues to be available from UMass Medical. Thank God!  Most people with ALS decline much more quickly than Phyl is experiencing and we are grateful to be part of this study.

I realize this all sounds pretty bad….  and of course, it is.   What continues to amaze both of us is that we get up in the morning and keep going.  I get up before Phyl, pray, feed the dogs (we are taking care of Brian’s dog for a while) and then have breakfast while reading the newspaper.  Phyl wakes, checks social media and email for messages from you all, and then does some stretching.  I get her breakfast while she reads the paper and then we make a plan for the day.  She begins almost every day with a ride on her golf cart in the fields nearby with a friend or two and our dog Riley.  Living life one day at a time makes it possible.  Our big adventures are shopping trips with her scooter and our accessible van.  Funny how we enjoy these simple things as long as we are doing it together.

Visits and calls from friends and family really help!  Thanksgiving was wonderful as we had all three of our son’s and their families home!  For Christmas, Brian, Belita and Elena will be in Colorado, but we’ll see Jeremy, Jake and their families as well as my mother and brothers.  And right after Christmas, we are off to Aruba for 3 weeks.  Phyl is really looking forward to the warm weather, as she struggles with the cold.  While we are gone, a contractor will come in and begin gutting our downstairs bathroom to build us a handicap accessible shower etc.  This is a huge project and we have been working on design, purchasing fixtures, floor tile, lighting, etc. etc. etc. for the past few weeks.  It won’t be done by the time we return but hopefully they will make significant progress.

We have an aide that comes in three mornings a week to do household stuff under Phyl’s direction and watchful eye.  This will increase over time.  I suspect we’ll have someone come in when I’m teaching next semester as I must be on campus two afternoon’s a week.  Fortunately, some of my work I can do from home.  I’m giving up advising students since this requires more meetings on campus than I want.  I’m looking into early retirement, so I don’t have to leave Phyl during the day.  I’ll continue to teach online but we’ll be making lots of changes over the next year (all one day at a time).

So that’s us…..  as difficult and sad as it seems at times, if you were sitting in our living room talking with Phyl – you probably couldn’t tell there was anything wrong.  She loves to chat and visit with friends and of course our family.  Her friends have teamed up to bring us meals twice a week which is really helpful.  Its kind of amazing how we’ve adjusted and adapted to her limitations, not without difficulty and sadness of course.  But we appreciate all that we have so much more than if life was easy.  I wouldn’t wish this on anyone and at the same time, the small things we do together give us so much joy and even some peace at times (prayer helps).  I know many people with ALS don’t have the resources or support that we have and we never forget to be grateful. Most important we have each other…

Love to you all…..

John

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TO:  Friends and Family

I have not written since early July…. so its time.

We spent a great month in Rhode Island at a beach house and the rest of
the summer was pretty relaxed.  Lots of family and friends visiting.  We
got to Florida to visit Milt and Florrie and to the Jones Beach Theater
with Stuart and Gretel to see a Jimmy Buffet concert (fantastic). We
bought a used wheelchair accessible van which has a ramp so Phyl can
drive her mobility scooter right inside.  She is driving the van on her
own and then she jumps onto the scooter and backs down the ramp, presses
a button and the ramp retracts… and off she goes!  We love it (partly
because I was picking up the scooter and putting it into the back of our
car and quite frankly, it wasn’t doing my back any good).  We took the
new van to a wedding in Vermont (at which she learned to do the “scooter
dance” at the reception), the beach at Rhode Island (granddaughter), and
a couple of trips to Boston (grandsons).  And we use it for running
errands and going shopping together.  The van has made getting around
much easier!

I went back to work in September but I’m only on campus 2 or 3 days a
week.  I’m loving teaching but would much prefer to be at home to make
sure Phyl gets the support she needs.  I teach some classes online and a
lot of my work can be done from home.  We hired a home health care aide
to hang with Phyl a few days a week.  At first she wasn’t too sure it
was a good idea but she got used to giving instructions to Sarah.  They
got a lot of organizing done and had a lot of laughs (we liked Sarah who
is the wife of a local farmer – I’ve known them both for years) but
Sarah had to quit as her own life was too busy with kids and running for
a local election.  We are still waiting on our new aide to start. Sarah
was only coming in for 2 hours a day but it was a help.

We have a Long Term Care insurance policy that will pay for home health
care on a more regular basis when it is needed.  For now, we have to
cover the first 90 days of care ourselves so we have the aide come in
for the minimum amount of time (2 hours).  After we pay for 90 days, the
policy will begin to pay.   If Phyl needs more intensive care and
support someday, this will help cover some of the costs.  While it is
really difficult thinking about this, we are doing what we can to be
prepared.  If we can afford it, I’ll retire so that I can be home as
well.  I have a difficult time leaving Phyl at home even when someone is
with her, but right now we need the money.

Phyl’s friends started something called a “Meal Train”.  They are
bringing dinner to us twice a week (and with leftovers it often lasts
another day).  Phyl can’t really prepare meals but she is getting pretty
good at giving me cooking instructions!  So the Meal Train has been
really helpful and we are getting some great meals!  She has an amazing
network of friends.  In fact a few of them just showed up and I can hear
them laughing in the living room (while I hide out in our office – the
former guest room).

I think I mentioned that we remodeled my old office into our bedroom on
the main floor so Phyl can avoid steps.  I put ramps onto the house from
the garage so she can drive her scooter into the mud room and then push
her walker into the kitchen.  We just met with a contractor to start the
bathroom remodel (roll in shower, accessible sink, more space to turn a
chair around etc.). It is a major job and will require completely
gutting the downstairs bathroom.  We hope to have some of this done
while we are in Aruba in January but it is going to be very disruptive
for a while.  But it has to be done….

Her physical abilities continue to decline slowly.  Doing just about
anything is hard and tiring.  Stairs are really rough.  Jake took her to
the Boston Opera House where they saw Hamilton last weekend (she loved
it) but there were 8 stairs to their seats and it was difficult.  She
can’t open jars, zip up or button her own jacket or pants, and handling
eating utensils is getting more troublesome.  I’m getting good at
working the clasp on her necklaces but haven’t tackled ear rings yet!
While she is still using the walker in the house for short distances,
she needs the scooter for longer distances.  We have an appointment to
get fitted for a power wheel chair next month.  She is not doing well
thinking about the power chair as it means a severe limitation in her
personal mobility.  And while we expect (and pray) that she can continue
to use the scooter for a long time, we need to be prepared.

Her favorite vehicle is her golf cart.  She takes our dog Riley for long
walks in the UMass student farm field at the end of our street each
morning.  She often takes a neighborhood friend along and they don’t
stop talking.  It will get more difficult with the cold weather as she
can’t really take the cold.  Her hands become pretty useless when it is
cold but for now she thinks she is pretty cool zipping around the fields.

Her attitude is good much of the time but there is always a sense of
sadness in the background.  It is amazing how we can experience sadness,
fear, joy and gratitude all at the same time.  Some days are harder than
others, but somehow she shakes off the sadness and gets through the
day.  When friends visit or we have something planned, it is much
easier.  Next week she is going to Florida with college friends and I
know she will have a blast (and come home exhausted).  She has fallen a
few times recently when her legs get tired and give out – so I worry.
But we are both living one day at a time and remembering to be grateful
for all of the good things in our life.  And we have a lot!

And we continue to hope.  Her lung capacity measurement went down at our
last 3-month check up.  This is pretty scary.  Still, I know that the
experimental drug she is on has slowed down the disease progress.  She
lost a lot more muscle and strength during the 7 weeks she was off the
drug in the winter (while they changed the formulation to improve the
flavor).  When she went back on the drug, the disease progress slowed
down again.  We are also trying a new drug.  I read about a study in
Japan using cell cultures from ALS patients in which they screened 1200
potential drugs.  It seems that one stood out above all the others in
maintaining living motor neuron cells on the lab bench.   The new drug
is called Ropinirole and it is used for both Restless Leg Syndrome and
Parkinson’s.  I mentioned the study to our neurologist last week and he
asked if we wanted to try it.  It is an off-label use but at least it
has been tested for safety on people, so we are giving it a go.  Of
course since it hasn’t been tested with ALS patients, we have no idea
what dosage to try.  The doctor suggested starting low and seeing what
we can build up to.  I’m talking online to a few other people who are
trying it as well across the country.  We are praying for this one.  A
miracle would be much appreciated!

So we keep plugging along.  We pray for the best and continue to plan
for whatever may come.  I know from my ALS Caregiver Network that we are
much better off than most families struggling with this disease.  We
have amazingly supportive friends.  Our family is showing up in our
lives on a regular basis.  The disease progress is relatively slow
compared to most.  And we have each other…..

When I’m asked what folks can do I always tell them to just keep calling
Phyl or showing up!  Stay in touch, it makes a world of difference.  And
pray….

Love to you all,

John

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TO:  Friends and Family

FROM:  John

I have not sent an update on Phyl for a while as we have been enjoying
ourselves on the beach in Rhode Island.  We rented a small cottage right
on the sand dunes and within eyesight of Pt. Judith Lighthouse.  The
yard was fenced so we could bring our dog Riley.  We spent quiet days
reading on the beach, blustery days huddled on the deck, and fun-filled
days in the sand with family and friends who visited.  And lots of
seafood of course.  It was for the full month of June and both of us
relaxed and enjoyed not thinking too much about “real life.”

Coming home was more difficult.  Phyl has been putting off thinking
about the progress her disease is making and it hit her yesterday.  We
had one of our regular visits to UMass Medical as part of the study
trial she is in on Monday. Lots of muscle measurements and talking about
ALS.  We also had a phone call to a Home Health Care Agency in the
morning discussing getting her a few hours of help from an aide each
day.   And we talked about how to make our home more wheelchair
accessible.  On Monday night she acknowledged that the disease is making
her days really difficult as she can’t do so many things that she wants
to do.  The disease progress is slow but continues to take away her
physical abilities.  And yesterday it hit her.  Fortunately, she had a
visit from several friends who let her talk and cry while I went to work
for a while.  She acknowledged that no matter how hard she tries, she
can’t stop the disease.  I think the hope she got from the ALS
Walk-a-Thon and all of the new research allowed her to imagine that a
cure was within sight.  Yesterday she realized that it was not likely
going to be in time for us.

I am sorry to have to share this with you, but she wanted me to make
sure you know the truth.  The pictures of us on Facebook enjoying our
kids and grandkids are all real.  It is amazing how much joy can be
mixed in with so much sadness at the same time. So our plan is to
continue to do whatever it takes to allow her to do what she can and be
as comfortable as possible for as long as possible.  And while we are
not planning on a miracle cure, we are certainly open to being
surprised.  Planning for a cure however is too draining and when the
hope disappears, it is crushing.

The good news is that the experimental drug she is on seems to be
slowing down the disease progress.  The good folks at UMass Medical have
a record of her muscle strength over the past 9 months.  While her legs,
feet, arm muscle strength is going down, it is going down slowly.  She
was off the drug for 7 weeks while we were in Costa Rica (while they
reformulated the flavor) and her decline was measurably worse than while
on the drug.  We are grateful for this.  She is also convinced that the
support she gets from friends and family, her diet, exercise,
acupuncture, vitamins etc. all have contributed to her relatively slow
loss of muscles.  The scary loss however is in her diaphragm strength
which continues to decline steadily.  Breathing is not affected yet but
it will be eventually.  I suspect she’ll need a bipap (mechanical assist
worn over the face) to sleep at night within the next year.

Today she can walk with a walker and drive a car.  Right now she is at
the local coffee shop having lunch with friends.  Getting the walker in
and out of the car however is a struggle and she sometimes needs help.
We moved our bedroom to the main floor of the house so we no longer have
to climb stairs which are quite difficult.  And we are making plans to
remodel the bathroom next winter so it is wheelchair accessible.  We
have a visit with the neurologist on Friday and we will ask if it time
for her to be fitted to a power wheel chair as I’m told it takes 3-4
months to get it.  She is still using the scooter outside and I can put
it in the car and take it with us when we go shopping.  She is quite a
terror driving up and down the aisles in the stores.  And her new golf
cart arrived today so you should be seeing pictures soon on Facebook of
her walking Riley out in the field by our house.

This morning we confirmed airline tickets for a trip to Aruba in
January.  We found a handicap accessible apartment with a pool and I’m
told Aruba is fairly flat so we hope to be able to get around!  I don’t
know what it will be like traveling but we did get a non-stop flight
from Boston to make it easier.

I’m not sure what the rest of the summer will bring.  I know we have
visitors in July and we may try to squeeze in a week at Cape Cod in
August.   She also has pots that she has already made to glaze and fire
in the pottery studio.  She doesn’t think she is strong enough to make
pots any longer however so we will likely be cleaning out her studio and
giving away her equipment.  This is really sad and may take some time.
If you have any pots she has made, I hope you will cherish them….

I go back to work in September but I’m only teaching 2 days a week so I
can be at home to support her much of the time.  We will also have an
aide come in to help her during the week.  We are not sure yet what she
will be able to do on her own but she has fallen a few times and I am
worried about leaving her alone for too long.  She is stubborn (as you
know) and I have to be careful not to do things for her that she is
capable of doing herself.  The problem is that she pushes herself and
then is exhausted.  I”d prefer that she push herself on fun stuff like
playing with her grandchildren rather than doing housework and meals.
So we’ll see how it goes.

I realize this email is less uplifting than some of my previous ones –
but that is where we are at.  We try to live one day at a time and
appreciate all that we have rather than focus on what we can no longer
do.  Phyl and I often talk about how blessed we have been with amazing
children and grandchildren.  And on July 15 we will celebrate 45 years
of marriage.  We met in the cafeteria at Great Neck North Senior High
School in January of 1969.  If my math is correct that means we have
known each other for about 50 years.  I could not ask for any more in
one life time than simply loving and caring for my wife.

Love to you all…..

John

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FROM: Phyl

I thought you might be interested in my perspective of dealing with this disease. I found this article that really spoke to me. I changed a few things.  I added a few of my own words and feelings and deleted what didn’t speak the truth for me.

What is Good About Living with ALS?!!

1. The truth is, living with ALS requires a sense of humor, dark and/or light hearted, to keep your sanity. And dignity becomes a lost cause all too quickly. You can either laugh or cry, and it is far better to laugh.

2. You find immense clarity of what really matters.  Feeling the warmth of the sun on my face and ocean water lapping at my feet – priceless.  Watching my grandchildren run and laugh and play – priceless.  Being with family and friends – priceless.

3. You discover good, compassionate people who come into your life to replace the ones who fade away. You are amazed at the resilience of your family and friends who give of themselves to ease your struggles.

4. You take nothing for granted, knowing that this life is precious and no one lives forever.

5. You shift your focus on ‘stuff’.  Collecting ‘stuff’, buying ‘stuff’, and saving ‘stuff’ all are colored with the very real ‘do I need this stuff’ question. Fundraising that will produce a cure is more interesting than ‘stuff’.

7. You lose the drive to expect people to behave in certain ways, and find relationships can be so much better without those expectations. You can be happy and grateful for what happens rather than miserable for what doesn’t.

8. You can let people know how much they mean to you and listen to how much you mean to them.

9. You can write this chapter of your life as you wish.  You can choose to enjoy every moment possible. You can choose to live the life you have left as best you can, with courage and strength and humor and grace.

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