Category Archives: Phyl’s Story

Keep smiling and live life

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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Back from Aruba

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 up 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)!

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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 your love and your support.

Love to you all….

John


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The holidays approach again

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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We need your help

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 – see video clip below), 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.

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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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After the beach

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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Phyl speaks about ALS

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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The fundraiser, golf cart and more

TO:   Family and Friends
FROM:  John

So most of you know that Phyl’s fundraiser was a great success.  Personally, she raised over $10,000 and was the second highest fundraiser.  Collectively, they got near $100,000 which was more than twice what was raised last year.  Thanks to everyone who contributed.   It made Phyl feel really supported.

Of course, those of you who joined us for the Walk-a-Thon last Saturday know it was wet and cold AND ful of love and excitement.  Phyl was blown away by the support.  Her team, the Phyl-in-Tropics, had the largest group of supporters of any of the teams in attendance (over 50 people showed up for Phyl).  She rode around Look Park holding our granddaughter Elena with a big smile on her face.  Grandsons, Colin and Noah, waked by her side… and our son’s held the umbrella over her (no easy task).  All in all, we had a wonderful day.  Our neighbor posted 88 pictures from the walk on Facebook.  See Facebook Page here.   I think you can see the pictures even if you are not on Facebook.

We had another check up at the UMass Medical Center in Worcester this week.  This was part of her experimental drug trial.  One of the advantages to the trial is that her muscles and lung capacity is monitored closely.  I’m sure I mentioned in the past that her strength measurements were holding fairly constant during the second three months of the 6 month trial.  When the trial ended, she went off the drug for 7 weeks and we both could tell that her strength declined during that time.  She went back on the drug about a month ago and will be allowed to take it for a year.

On the home front we’ve got lots of changes.  We are moving our bedroom to the main floor because Phyl struggles with the stairs.  We are putting a big picture window in what used to be my office.  We are also remodeling to make the doorway power wheelchair accessible and painting.  We will turn our guest room into a shared office space for both of us (and still have LOTS of space upstairs for visitors).

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We also bought a used golf cart for Phyl to take out into the fields near our house.  It has a raised frame and knobby tires so she can go off-road.   We are close to several farm fields that will allow her to zip around.  For the past 7 years she has wondered these fields with our dog Riley and she has missed it this past year.  She has been able to take Riley around the block on the scooter she got from her Uncle Martin.  She loves the scooter for the roads (and she’ll be able to use it in the house) but the golf cart will let her go exploring again!

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We are in the process of trying to sell part of our back yard and gardens to help pay off the home mortgage.  If we are successful, it will allow me to retire next year.  We are getting to the stage when she really needs me to be around and frankly, I’d rather support her than do anything else.  I have to teach one more year because that is part of the sabbatical agreement…. but if we can afford it, I’d like to retire sooner than planned.  Selling the lot has turned out to be much more complicated than I had originally thought however so I’m not sure if it will happen.   We have arranged to remove our pool after Labor Day so anyone who wants to go for a swim, be sure to stop by before then!  We also got a recumbent bike for her!

We are headed for the beach at Pt. Judith, Rhode Island again in June.  We spent two weeks there in September and Phyl loved it.  We have a small bungalow about 50 yards from the beach.  We’ll spend the full month of June in Rhode Island.  Of course Brian, Belita and Elena live just down the road but you are all welcome to visit if you can (schedule with Phyl).

John


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We are feeling pretty good

TO:  Our Friends and Family

Phyl asked me to send you an update (as we have been very busy and she is feeling pretty good right now).   I’m not sure what is going on, but her attitude has been wonderful lately.  Well… wonderful for someone with a chronic disease, that is.  I think it may be that we have been interacting with other local folks with ALS as part of the Western Mass ALS Walk-a-thon fundraiser – and she is doing pretty well compared to most people with this disease.  Or… maybe it is just the spring weather helps!

She is back on her experimental drug, Amylyx, after a 7 week break.  The company could not provide the product (they were trying to make it taste better) immediately after she completed her 6 month trial.  Since Phyl was the 4th person in the world to be on the drug, we were a bit out in front of the process.   But after the initial drug trial period, the company offered those who have completed the trial access to the drug for the next year.  While there is no indication that the drug improves her muscle ability, she is convinced that it slowed down her muscle loss for 6 months – and then she experienced a more rapid decline during the 7 weeks she was off it.  We are watching and waiting on new drugs and perhaps the stem cell work to progress but for now, we are pleased to be back on the Amylyx.  Her legs are quite weak and she is using a walker around the house.  The leg braces help and she can still climb stairs.  We’ve used her wheelchair for several trips that required more walking and now she has the scooter!  Her left hand is also very weak and typing on her computer is slow.  Her last evaluation also showed some loss of muscle in her diaphragm and reduced lung capacity.   It is still fine for now, and her voice is strong but this is pretty scary.   Fortunately, the disease progression is slow.  Her neurologist told her during her last visit that “he would be seeing her on a regular basis for long time.”  I hope so…..

And… with all the limitations, Phyl continues to drive her car, go to yoga, swim (up to 26 laps…. slowly), go to acupuncture and make pottery!  I have been going with her to the pottery studio because she is not strong enough to carry, cut, or wedge (prepare) the clay.  But if I give her a hunk of clay she can make a pot!  It is slow and I know it is frustrating since in the past she would routinely make 8-10 pots in a day, and now she makes 2 or 3… but she is really happy working in the studio with her friends.  I go along on her throwing day and the next day she can go alone to trim and decorate the pieces she made.  This has been wonderful!

And…. with spring we have been outdoors.   Yesterday she was crawling along the ground (really) in her garden pulling weeds and last week she helped Jeremy and I do a bit of raking in the yard.  Aunt Helen gave her a nifty little scooter that her Uncle Martin used around the house.  Phyl of course needed to take it “on the road” and has been circumnavigating our neighborhood on a regular basis with our dog Riley.  This allows her to chat with neighbors (yesterday she went around the block three times and it took 90 minutes with all of the stops to chat).  We also took the scooter to Look Park in Northampton yesterday and did a 3 mile loop (I had to walk) but she was truly feeling happy to be outside.  The scooter gives her a sense of freedom that she has not experienced in a long time.  It has been over a year since she could walk Riley and she loves it!

Mobility is a problem and she is struggling to climb the stairs in our home to the upstairs bedroom.  She is able to make it – but it is difficult.  We considered a elevator seat and tried one out in a local medical supply store.  But Phyl knows she wouldn’t use it (too slow) and it would only be a temporary solution according to her physical therapist.  So we had a contractor in last week to give us an estimate on remodeling my downstairs office and making it into a bedroom.   We would also turn our guest room into a shared office space so both of us can spend most of our time on the main floor.  Phyl is excited about the remodel as she is planning on opening up one of the windows and adding a skylight for more light.  She is also having the closet rebuilt and we have to widen the doorway to allow a power wheelchair to fit into the room (someday).  We hope to have this project completed within the next month and then move downstairs.

We also got an estimate on a big bathroom remodel to create a walk-in (shower wheelchair drive-in) shower unit and ADA compliant toilet and sink.  This will also require widening the doorway and a complete remodel of our very old bathroom.  While it stinks that we need to make it handicap accessible, Phyl is delighted to gut the old bathroom and do a complete redesign.  This project won’t start right away because she doesn’t need to be in a wheelchair yet and it is expensive.  We are also looking at ramps to get a power chair out the front door.  While this is not how we planned on spending our “mature” years…. it is our life today.  I know this is disturbing news for our family and friends, but we are actually doing quite well.  Somehow we are learning to adjust and live one day at a time.

More changes…. we have met with a realtor about selling the back lot of our property where my gardens have been.  We’ve got no time for gardens and chickens etc., so we really don’t need all this land.  I’ve been meeting with the Town Planning Department as it is not quite a legal building lot.  I’m working on trying to buy a bit of the neighbors property to comply with building codes so the lot can be sold eventually (its complicated).  But if it works out, it will pay for all the remodeling!

Its really fortunate that I’ve been on sabbatical leave this year with all of the changes we’ve need to make.  I need to go back to work in September and we’ll look at having a home healthcare aid come in a few days a week so I can go to campus.  I can’t quite afford to retire yet but my hope is that I’ll be able to do so soon.  As much as I love teaching, I’d much prefer to be home with my wife.  Life goes on….

And…  we will spend the whole month of June at the beach in Rhode Island (not far from our beautiful granddaughter Elena…. and her parents).  Noah and Colin (and maybe their parents too) will visit us and perhaps Jeremy and Sam can visit.  We got the same beach house that we rented last September which is about 50 yards from the beach near Pt. Judith.  Phyl loves being in the water.  She says that when she is floating she is not aware of her muscle weakness.  Of course, I’m on guard watching her!  She is looking forward to using our pool this summer as well.  It is probably our last year with the pool as it will disappear along with the big back yard if we can sell the back lot.  But for now, we’ll get some use out of it.  More changes!

So, that’s life here at the Gerber ranch.   While it might sound distressing…. we are not feeling distressed (well sometimes).  Phyl has so many friends who keep her busy (she just left to go swimming with our neighbor Carol).  She is excited about the ALS Walk-a-thon because so many of our family and friends will be joining us on May 12.  She chose the tropical theme while we were in Costa Rica and named her team “Phyl-in-tropics”.  She is asking folks to wear loud Hawaiian shirts and plans on decorating her scooter!

Thanks to all of you who have either donated and/or plan on walking with us on May 12.   If you are on Facebook you can see all of the support she is getting for her fundraiser.  She has raised almost $6,000 for the ALS Association (for patient care and research) as part of the Walk-a-thon.  You may remember that she also raised over $5000 for the ALS “Cut-a-Thon” a few months ago.  She is one of the top individual fundraisers in Massachusetts!  Anyway, take a look at her team page if you wish:  Phyl-in-Tropics.  If you are planning on walking with us, please click on “Join our Team” to register.  No need to contribute money but it is great to see so many people who are supporting her.  Every time someone joins the team she gets a phone message.  She gets excited and feels really supported when folks sign up.

Okay… I need to end this email.  It is much longer than I intended (I don’t like reading long emails either).  I hope you are all doing well with your own personal struggles.  I know that Phyl and I are not the only ones with challenges.  For me, I am really grateful to have this wonderful woman in my life.  I know that you feel the same….

Love to all….

John


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The news from Costa Rica

TO:  Phyl’s friends and family
FROM:  John

If you are not following Phyl’s daily posts and pictures on Facebook, you might want to hear a bit about our stay in Costa Rica.

We arrived on February 12 in San Jose and drove to Puerto Viejo the next day.  PV is the southern most town on the Caribbean just before a mountainous national park and Panama.  Basically the end of the road.  Kind of funky place, with lots of young people (surfing) and retired folks (lounging on the beach).  We chose to join the retired gang and have been at the beach every day.  Phyl as you know has always been something of a fish and loves the water.  She loves to float in the waves and the buoyancy actually allows her to feel somewhat “normal.”

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We have a pattern of coffee/tea in the morning with Phyl in her hammock on Facebook.  We make breakfast and then head to town to buy a loaf of steamy hot French bread from a local guy who has it ready when he sees me walk in the door.  Next off to the supermercado and fish market and with a quick stop at the coffee shop for gluten-free muffins, we are back at our bungalow by 10am.  We get ready for the beach and then off to our favorite isolated spot at one of the “top 10 best beaches in the world” according to Trip Adviser to spend the day reading and floating (Phyl is in the sun and I”m under my umbrella).  Phyl is back in her hammock at our bungalow as the sun goes down and then we make dinner and often watch a movie on Netflix on the computer.  We do have TV but the only English channel is the BBC International News.  I generally watch it for a few minutes at night because unlike at home it is NOT all about Trump.  Tonight I learned that it is raining in Madagascar and Carlton beat St. Kilda in Australian Rules Football!

Yesterday, we rented a kayak and took a guided trip up the Rio Punta Uva. We saw a Caiman (like a small alligator), monkeys, sloths, lots of turtles, and the highlight was a bunch of vultures tearing apart a dead raccoon.  This was good for Phyl (not the vulture part but the paddling) because in a kayak she feels just like everyone else.  She is not limited by the ALS.  When the guide asked if we wanted to go through the breakers out into the ocean she said hell yes!

Of course ALS is constantly on her mind of course when we drive by tours and hikes that she can no longer do because her walking is limited.  It has been hard for her but she is getting better at letting go of the disappointment.  We are working out ways that she can do things.  For example, getting in and out of the water is difficult if there are waves.  So I go with her, holding two hands and we work with the surging water for her to get out without falling down.  We are getting good at it!  She is using her walking sticks to go into stores and I’m driving her short distances between the stores to save energy.

Her leg strength is a problem but stamina is more of a problem.  A few days ago she spent a long time in the water and the next day walking was very difficult.  This gets her down and she had a tough cay.  I texted her son’s that evening and they were able to Facetime.  This cheered her up and the next day her strength was back.  Even though we know she will have bad days, she takes it really hard.

Nevertheless, we just got news that we will have our house on the beach in Rhode Island again for the full month of June (another couple wanted it but the owners like us).   And Phyl is already talking about our next trip to Costa Rica.  This will depend on her ability to get around, but I’m encouraging it.

When we get home, she will go on the experimental drug again (there was a lapse because it wasn’t ready) and we have an important medical appointment to test her lung capacity on March 16.  This is the big question for as long as her breathing is good, we can manage the rest.  By the way, she is not talking about this so don’t mention it if you talk to her, unless she brings it up.  I know she is nervous.

As you know she continues to raise money for ALS research.  Her “team” (called Phyl-in-Tropics) is still in first place fundraising for the Western Mass ALS Walkathon.  I know most of you have contributed, so thanks!  This makes her feel really supported!   I know quite a few of her friends plan on joining us and will help push her wheelchair for the three mile walk.  If you want to see how her team is doing, check it out here:

http://web.alsa.org/site/TR?pg=entry&fr_id=12994

I guess that’s all for now.  We are loving Costa Rica but seriously missing our grandchildren.  Looking forward to seeing them soon as we head back on March 9.  Jake will pick us up at Logan and the airlines have been great rushing us through customs (one of the advantages to wheelchair service).

Love to you all…….


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Headed for Costa Rica!

TO:  Family and Friends

As most of you know, we are getting ready to leave for warmer weather in a few days.  We rented a bungalow on the beach at Punta Uva near Puerto Viejo, just south of Limon on the east (Caribbean) coast of Costa Rica (in case you are in the neighborhood).   We’re hopeful the warm weather will help Phyl’s muscles as the cold has been hard on her.  We are back in Massachusetts on March 9.

Yesterday, she had her final visit and evaluation as part of the 6 month experimental drug trial for Amylyx.  I thought that her loss of muscle ability during the time she was in the trial was slower than the previous 6 months and the test scores seem to agree.  In fact, her muscle strength scores yesterday were no different than in November or January.  This was really good news and a huge relief!  It is not a “cure” but hopefully has slowed down the progress of the disease.

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She is still weak and her stamina is low but she is able to climb stairs (with effort), drive her car, and walk around the grocery store with a cart (and me).  We celebrate small victories!  Her left hand is pretty useless in the cold but gains function when warmed up (so she can type with two hands on her laptop most days).  All in all, she is doing much better than expected based on what we know about ALS.  I don’t know if this is due to the Amylyx or if her rate of disease progression is just slow but we are grateful.

Although the Amylyx trial is over and she is off the drug for now, the company is offering to allow us to continue on the drug for the next year.  It won’t start until we return from Costa Rica but we are really pleased to have this opportunity!  We are watching two other experimental drug trials as well to see when they open and we’re hopeful the stem cell research progresses.  Ever since the Ice-bucket Challenge there has been much progress in research which hopefully will result in a treatment someday soon.

AT THE WOMANS  MARCH

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One of her big days this month was “walking” in the Women’s March in Northampton with her friends who pushed her in her wheelchair.  Frankly, this was a big step as she had not wanted to be seen in a wheelchair but she so wanted to join in the march.  She was very grateful to be able to participate.  Her friends have been great…. lunch, coffee, museums and other outings.  The past two weekends we have visited Brian, Belita and Elena in Rhode Island and then Jeremy and Sam in Burlington VT.  And Saturday, we head for Somerville to spend the weekend before we leave with Jake, Shannon, Noah and Colin!

Nothing cheers Phyl up more than when friends and family rally around her.  You remember the haircutting fundraiser she did for the ALS Association of Massachusetts in October.  She loved doing this and felt warmed by all the support.  The ALS Association put $3 million into the Amylyx trial, so we feel pretty supportive of this organization.  And she is doing another fundraiser, this time a Walk-a-thon, on May 12 in Northampton.

I’ve attached the link to her Walk-a-thon team page below.  She named her team “Phyl-in-tropics” and she plans on wearing a flower/tropics shirt to the event.  We hope you can “join her team” and walk with her (or help push her wheelchair) and wear your own flower shirt.  But if you can’t be in Northampton on May 12, you are invited to make a donation in her honor.  Here is the link:

http://web.alsa.org/goto/Phyl-in-tropics

The amount you can donate is much less important than her just seeing your name on the list!

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Our next big “test” will be on March 16 when we go back to UMass Medical Center for her ALS Clinic visit and they measure her lung capacity.  For now, she is good.  And of course I don’t know what the long term will bring, but we are focusing on the near future and warm weather for the next month!

Love to you all….

John


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