We've been feeling really fortunate this year to have Michelle's frequency of visits reduced to about 2-3 times a year with the treatment team. When she was originally diagnosed, we were originally making monthly trips down to Durham, NC to see the team and, while we were always thankful for our team, it was difficult to spend so much time with this diagnosis in the forefront.
With that said, it has been about 5 months since our last trip to the team at Duke. Dr. Bedlack looked stunning, as always, this time around. He wore blue, green and black plaid golf pants, a black leather blazer, and a black leather tie. And, did I mention that he is always rocking his signature faux-hawk? lol One of a thousand reasons that we love him. After doing her neurological evaluation, he said that Michelle was having more progression in her right arms/hands and had more atrophy on that side. Michelle had pretty much pegged that and her right side has been, from day one, the part of her body that she has the most difficulty with. She is still resistant to PT and OT's recommendation for assistive devices, which has now just become a joke among the staff when we arrive.
We did receive some unexpected news at this appointment. Michelle's FVC has dropped a bit and they also have some concerns about her breathing at night. She has began snoring at night, waking frequently, and struggling with overall fatigue (above and beyond her normal fatigue from ALS) during the day. Apparently it is common for folks with ALS to begin having issues with progressive diaphragmatic muscle weakness (in most folks they call this sleep apnea). While most folks who get diagnosed with sleep apnea slap on a machine during the night and call it a day, this diagnosis for folks with ALS can mean the beginning of a decline in respiratory status. Most patients who go onto bi-pap for the evening hours slowly increase its use to a few hours during the day and then to more frequent periods during the day. Some people even make the decision to go forward with being trached and vented.
With Michelle's progression being very atypical and very slow to this point, the news of a possible change in her respiratory status is daunting. The symptoms that we've always feared the most have been her bulbar symptoms. We have enjoyed living in this sort of alter universe for the past 16 months, enjoying our baby daughter and our busy and wonderful life. ALS is now throwing us a curve ball. We both laughed tonight in bed after we talked about how it was much easier to pretend like Michelle does not have ALS. And, while we do laugh about it, sometimes this has been the only way that we've been able to function in our day to day life. Friends out there who have lived with this illness or been the caretaker for someone with this illness certainly understand. Michelle has had almost nothing in the way of bulbar symptoms since her original diagnosis in 2008. And, the truth is, we will not know the full extent of what is going on with her body until she does her sleep study through MCV. We're both sort of hoping that it is just allergies (we can hope, right?).
There are very few moments that make me feel completely inadequate as a partner, but tonight, when my beautiful wife laid in my arms with tears streaming down her face and said "Babe, I don't want to be sick. I don't want to die," I felt the most inadequate that I ever have. There aren't a lot of reassuring words to offer or some miracle fix that we can work toward. All that I could say is that I know and I'm going to be right here by her side for every moment. I feel fortunate, more and more everyday, for having been given the gift of such a beautiful woman to call my wife.
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