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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