Friday, April 14, 2017


My brain is "abuzz", "confused", "befuddled" with all that I am feeling now. On one hand the clinic visit yesterday was productive and I got information that will help me move forward in this journey. (It's kind of ironic that I call it a journey as I feel the longer I live with this disease the less I am moving) I met with Dr. Elman, the speech and language therapist, the nutritionist, the PT, and the OT. Mary, the nurse practitioner who manages everything, measured my breathing which went down considerably in the upright position and basically remained the same while laying down. I will start using a bipap machine - it basically does the work of breathing muscles - at night to give my breathing muscles a rest. Hopefully I will sleep more soundly and during the day my breathing muscles won't be so tired.
I turned down the offer of a hospital bed. It represents too many difficult things in my head. Adam and I are looking into an adjustable bed for upstairs instead. We are getting some home care PT to teach us how to transition from one location to another now that my legs are much weaker and much less cooperative. The PT gave us a gait belt so Adam can move me without killing his back. Mary is also going to try to order us a Hoyer lift.
In my mind the big conversation revolved around the feeding tube. Now that I am starting to have some difficulty swallowing, I am going to try to eat foods that are softer and smoother - smoothies, yogurt, etc. - in order to alleviate choking risk. They want to do the procedure in awake anesthesia, not on a ventilator, so my breathing muscles need to be strong enough to handle that.  Just because the feeding tube is in doesn't mean I have to use it all the time. Going back to clinic in two months to reevaluate. I predict the feeding tube will be in this summer.
There were lots of other conversations that revolved around hardware for my ipad attachment, stretching, eyegaze, and much more. All productive and informative. And I walked away from this appointment feeling pretty good and mostly positive. And then...I start to think. I start to think about the implications of feeding tubes and bipap machines, of talking technology and Hoyer lifts, and it all becomes too much to bear. So last night I cried (wept is more accurate) for the things that I will miss or never see, the moments that might happen without me. I cried for my beautiful children, and my devoted husband. I cried for my parents and brother and all those who love and care about me. And then I just sat and breathed.
One year ago yesterday I began writing this blog. This post is the 100th piece I have written. I went back yesterday to reread the first blog post, to see where I was physically and emotionally, to reflect how far I have come on this journey. My first post was questioning whether or not I was disabled. And though now I definitively am, this is what struck me about what I wrote:

... I am able to love my kids.  I am able to love my husband.  I am able to be over the top appreciative of the love and support my family, friends, and community are showing me. ...I am able to love on my dogs.  I am able to occasionally go places with my friends.  I am able to help my kids with big decisions and little ones.
So I am able.  Some days I am more able than others, but isn't everyone like that?  


1 comment:

  1. Deb, you don't know me but I stumbled upon your blog because Deirdre's father Stuart was my college boyfriend (how's that for the magic of Facebook!) I work in the disability field outside Boston and one of my projects has to do with respite supports for caregivers. I just wanted you to know that as a complete stranger I have found your blog to be absolutely beautiful profound and moving. Best wishes to you and your family. Amy Nazaire