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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