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).


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!


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).


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