An update on Phyl (from Florida)

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Leaving Amherst on a cold day in January

This is a story about our month in Florida.  We decided that our winter break from the cold needed to be someplace we could drive to, since getting on and off an airplane has proved pretty difficult and we need our wheelchair accessible van to get around.  So we drove to Naples, FL where we rented a small house for the month of February.

The drive down was uneventful (thank goodness) and we took our time.  Finding wheelchair accessible rest stops has become my new hobby.  We booked accessible hotels one day in advance and it worked out.

One night we spent at Jekyl Island, GA where we had spent many spring vacations with the kids, my brother and my parents.   Phyl recalled the beach where Jake took off on a wind surfer and couldn’t turn around.  John swam out to “save” him and they both had to be towed back by a local fisherman.  And there was the beach were Jeremy lost his beloved toy train “Percy” in the sand – which Phyl says is still out there!  And another beach where John and his Dad were watching Brian sail in the sunfish offshore (in the ocean) when Brian was disturbed by a huge fish (probably a ray) following him.  Fond memories! 

Traveling is bit of a challenge but somehow we figure it out.   Here we are leaving the hotel at Jekyl Island with all our gear and medical devices….

hotel2

The first week in Naples, we spent working out “systems” for moving Phyl around, finding food and of course getting to the beaches!  We had studied the region and we found that wheelchair access to shops, restaurants and beaches were pretty good in Naples (lots of old folks, you know).   Our favorite beach was Delmor-Wiggins, a Florida state beach just 2 miles from the house that had beach wheelchairs available.  We went there on a regular basis, and saw quite a few sunsets from this beach.

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Phyl is wearing her respirator, new bathing suit and communicating with friends with her iPad.  All set!
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Jess and Phyl

Our niece Jess arrived after a few days and we thoroughly enjoyed having her with us (she was a BIG help).  The weather fluctuated but we got in some good beach days with Jess and one day we visited the Naples Fishing Pier.

Jess also helped me get Phyl down to the water in the beach wheelchair.  I got pretty good at moving her myself, but it was always nice to have help!  Sadly, Phyl can no longer go in the water because the pressure on her chest prevents her from breathing (more on that later) but she loves getting her feet in the sand!

beachphyl
We got gear!  Beach wheelchair with the fat tires behind her, the respirator in a bag under her chair.  Also an auxiliary battery just in case.  The black “snake” holds up her Kindle.  The umbrella is blocking the wind.  She is ready for the beach!

Not every day was warm enough to go to the beach.  Phyl is always cold since her body isn’t moving much but somehow we figure out a way to get her outside   She loves to sit in the sun and read and nap, so we set her up in our little yard and she reads on her iPad about the snow storms back home.  If it is warm enough, she is outside day and night!

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Reading after dark on our patio.  Auxiliary battery keeps her respirator going.

Lots of visitors arrived to keep Phyl entertained (I’m pretty boring, I guess).  Her niece Sylvia drove down from Sarasota with her husband Mike and their three kids the same day as her dad Milt and Florrie drove over from the east coast.  Jess organized a serious card game but I think Milt was the most experienced at black jack.

cards

milt
With her respirator on she can’t talk of course, so here she is typing a message into her iPad which talks out loud for her.   Milt is listening…..

Our next visitors were my brother Dan and Jen.  Nice to have them around for a while!  We visited the Corkscrew Swamp which had a 2 mile boardwalk above the wetlands and allowed Phyl easy access.  It was a pretty hot day and there were not a lot of birds but we enjoyed the walk.  And of course, we had to go to the beach to watch the sunset!

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Phyl is able to get her respirator off for short periods, here to chat with Jen and Dan.

We went out to lunch on the dock in downtown Naples one day with Dan and Jen.  Phyl enjoyed sharing Jen’s margarita (I had to hold it for her) and Dan and I had crab! 

We planned on having our son Jeremy and his wife Sam visit for a few days as well.  We watched the weather in northern Vermont and celebrated when they were able to get out of Burlington in spite of the snow.  But then they got stuck in Washington DC airports for a full day due to a major rain storm that seemed to be locking down the East coast.  They had to return to Burlington rather than finding their way to Florida, since they only had a few days off work.  I don’t have a picture, but our good friends Bonnie and Gerry Ziegler from Illinois happened to be in Naples for a while and we had a really nice visit with old friends.

Once our friends and family went home, we got ourselves to the beach most days.  The best part was surely watching the sunsets!

So maybe I’ll tell you a bit about Phyl’s health.  The ALS is progressing (slowly thank God).  I am confident that the experimental drug she has been taking for almost 3 years has made a difference in the rate of disease progress.  Her neurologist thinks this drug will be the next ALS drug approved by the FDA.  We are grateful that we got this drug as soon as it came available as part of a study trial at UMass Medical Center (and we didn’t get the placebo)!  According to the ALS literature, 4 out of 5 people who started showing symptoms at the same time as Phyl have passed on by now.  So, are were fortunate in that respect, but the disease still progresses.

She needs her respirator most of the day.  Last Christmas Eve she was able to keep it off for several hours and enjoyed chatting with our family.  The next few days however were rough.  She must have gotten a respiratory infection because she couldn’t take her respirator off for more than a few minutes at a time without experiencing air hunger.  At this point she can take it off to eat – but not for long.  I love to see her smile and hear her whisper a few words at these times, but they are becoming rare.

Her limited lung capacity is also making her very tired.  She sleeps late in the morning and takes naps during the day which gives me a few hours to take care of my online class.  Her legs are gone and her left arm is mostly useless.  Her right hand and arm are partially functional but tire easily and sometimes I need to feed her, as lifting a forkful of food to her mouth is too difficult at times.  She has lost strength in her back and neck so that late in the day she has a difficult time holding up her head and shoulders.  This is pretty uncomfortable as there is no way to move about to relieve the pressure.  Thank God the power wheelchair is flexible and lets her change her position somewhat so her legs and back don’t get too cramped.  We are watching for skin breakdown as she is sitting all day.  So far, this has not been a problem but I’m told it is common with ALS.  I help her move or change chairs while on the beach because her butt gets sore if we don’t.  There is no easy solution for the discomfort of not being able to move your body.

We’re pleased that she can still eat real food, but swallowing has become a problem and there have been a few instances where she choked on a small bit of food.  And because she is losing muscles in her neck she can’t clear her throat, so that sometimes the phlegm will block her airway.  This is scary.  As long as there is some air movement, my job is simply to be reassuring and wait while she struggles to clear her throat.  We have a cough assist machine that forces air into her lungs and then sucks it back out quickly so she can cough a bit.  This sometimes helps.  And there is a modified-Heimlich that can be used on a person in a chair if needed but so far, it has not been needed.  We never know what will cause her to struggle catching her breath but it is definitely getting more difficult.

The bottom line is that we are trying to keep her compromised lungs healthy for as long as possible to avoid having to have a tracheotomy.  We have to avoid sick people, as a minor cold would be a real problem.   She still seems to wants the trach but her days are becoming more and more difficult.  I’m told that only 10% of the people with ALS choose to be trached because it isn’t easy living this way.  She is praying that the Nurown stem cell treatment that is in trial now will be approved but frankly, it is not likely to happen before she is forced to have a trach to breathe.  And there is no evidence Nurown will make a difference in someone who has progressed in the disease as far as Phyl.  All of the tests have been done on people who could breathe on their own and had some mobility.  So we really don’t know if it will help, even if it is approved.  I suspect the insurance companies will fight it since the cost seems to be somewhere around $300,000 and the treatments must be repeated every 3-4 months.  Its a long shot but gives her a bit of hope.

Her neurologist told her that she could request a trach at any time now, but that will change our lives significantly, as folks with a trach can’t be left alone…. ever.  And it is invasive surgery for which the recovery period isn’t easy for folks with ALS.  We are not looking forward to the next phase of this disease because it will be really hard on her.  But we have adjusted and adapted to each change as they have come along and as long as she wants to keep struggling, I will do everything I can to support her.

I tell you all this because Phyl wants her friends and family to know what is going on.  Sitting in her chair (especially on the beach) she looks pretty good!  At the same time, her day is a constant struggle.  Perhaps the biggest struggle is the frustration of not being able to do anything for herself (like scratch an itch, ask for a drink, or talk on the phone).  She has a doorbell with her to call me when she needs help and it rings constantly, except when she is sleeping.  When I’m called we then go through a comedy act of unspoken words, pantomime and guessing – to try to figure out what she needs.  While I love being able to help her and feel blessed that I am still able, she struggles with the frustration of having to ask.  This feeling of dependency is a both a blessing and a curse.

But she never quits trying.  There was an Art Show in Naples one weekend with artists from all over the U.S.  It was really crowded but that didn’t stop Phyl from weaving in and out of the constant flow of people with power chair.  We bought a batik from a guy from Los Angeles who made art work with Hebrew text (a gift for Sam and Jeremy for their new house – but don’t tell them).

After the Art Fair, we went to the Naples City Dock and had lunch on the water.  Phyl loved the calamari and was able to take her respirator mask off for a while.  Anything she can eat on her own with her fingers works.  She claimed however that she missed sharing a margarita with Jen!   It was fun to look at the big sailboats and watch the pelicans diving into the water to catch fish.

We met a very scary pelican on the dock!

pelican

So, yes…. we are enjoying the warm weather in Florida.  I really didn’t expect to like Naples so much, but it is a good place for us.  There are a lot of handicap accessible shops and restaurants.  The beaches often have beach wheelchairs available although we have been pretty happy just going to the state park 2 miles from our house.  The staff have been really helpful in helping me get the beach wheelchair and offer to help me lift Phyl.  She seems to trust me and ever since Dan and Jen left I’ve been moving her on my syrupown.  Quite often someone on the beach has jumped in to carry our stuff up to the car while I push Phyl on the chair.  And the wait staff in the restaurants have helped clear a path for our rather large power wheelchair to help Phyl get to a seat (preferably by the water).  All in all it was a positive experience.  I think Jeremy was worried that we might forget our New England roots so he sent us some maple syrup!  But no…. we will not become snow birds.  Our support system in Amherst is greatly missed!

Our last day in Naples, we went to Clam Pass Park which is a half mile board walk through a mangrove swamp, across a river and out to the beach where we enjoyed a lunch in the sun.  It was 86 degrees and difficult to think about heading home!

We stopped for one night to see Milt and Florrie in Boynton Beach.  It had to be a quick visit as they were both sick but it was good to see them.  Phyl is sad because we really don’t know when she will see her Dad again.  Although we talked about returning next winter, the future is pretty “unknowable” for us.

We are driving home where we will re-connect with Phyl’s support team.  We both want to vote on Super Tuesday of course.  And we have an appointment at UMass Medical to change her feeding tube (the hole in her belly where I give her drugs and supplemental food at times). I’m a little worried about going to a hospital where people are sick.  The Corona virus seems to really hit the lungs and that would be bad for us!

As always we welcome and appreciate visitors (as long as you are healthy) and can be patient waiting for her to type words into her iPad to communicate (the iPad talks for her).  It is frustrating for her when a group of people are talking and by the time she has typed whatever she wants to say, the conversation has moved on.  I watch her when she is typing and try to make sure her voice gets heard but lots of time she just erases her words without “speaking” because the topic has changed.  She can feel lonely even in a group of people but her close friends are aware and have become good at waiting.

When we get home Phyl will be gearing up for her annual Massachusetts ALS Association Walk-a-Thon fundraiser on April 16 in Northampton.    Here is a picture of the folks who walked with us last year.

ALSteam

Our good friend from our days in Illinois, Gail Binkley (formerly Juvik for family members who know Gail) will join us for our third ALS walk.  We rely on Gail, who flies here from California, to help us organize this event!  Everyone is invited to walk with us again.  If you can’t join us and would like to donate to her team, “Phyl-in-Tropics”, you can find the donation page here.  I doubt we will raise quite as much money as last year when Phyl was the second highest fundraiser in western Massachusetts, as our friends and family have already been very generous.  We so appreciate the Massachusetts ALS Association for their support and equipment they have given us on loan.  They were one of the funders for the experimental drug that Phyl is taking, as well as many other research projects.

And of course Phyl is looking forward to spring.  She will surely be “directing” the spring clean up and plantings again.  It has been wonderful to set her up on the patio outside each morning while we’ve been in Florida where she checks her social media and has breakfast (delivered of course).  We look forward to when she can do the same on our back desk at home.

We’ve booked the same house near the beach in Rhode Island that we went to last year for most of August.  I really hope Phyl is able to get there.  When we booked the house in Florida, I knew we might not be able to get there depending on her abilities and we did fine.  So we’ll try again!  Phyl needs something like this to look forward to and there is nothing better than a vacation at the beach with our kids and grandchildren.  It will all depend on if I can get her there safely.  My biggest concern is transfers from the bed to chair, chair to toilet, etc.  We have a hydraulic full-body lift with a sling that we will begin using at home when it becomes necessary and there is enough space in the house in Rhode Island that I can bring it along.  So we’ll see!

This post has become much longer than I had planned.  Thanks so much for all of your love, concern and most important your visits and texts.  Since she can’t speak much, texting with her friends and family has become really important.  When you think of her (and I know you think of her often) please stop for a minute and send off a text.  There is no need for an occasion or to share anything important.  Just tell her you are thinking of her.  She is on her iPad most of the day and so appreciates your messages.

Yes, I know… you all tell me to “take care of myself” too.  Got it!  My brothers Dan and Don are watching out for me.  And as you know, I’ve got a God in my life.

And life will go on….

Love to you all….

John


Click here for the next email in Phyl’s Story 

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