A couple days ago, as I was dishing up our family dinner, I popped a piece of chicken in my mouth and accidentally aspirated, drawing a small piece of chicken or phlegm into my lungs. I tried to cough it up, but wasn’t getting it out. I winced and pounded…
Joyful Sorrow - a Column by Kristin Neva
“Count your blessings.” “You need to be thankful for what you do have.” People often give silver-lining advice to those facing hard things, and I’ve been on the receiving end of it since my husband, Todd, was diagnosed with ALS. I’ve also found myself offering similar sentiments to people…
Last week, after having my yearly mammogram, I got a call from the clinic. The nurse told me that the imaging had revealed a spot that was concerning. I needed to go back for a 3D mammogram and an ultrasound. After I got off the phone, my eyes filled with…
In the “Barbie” movie, Stereotypical Barbie, played by Margot Robbie, is living her best day, every day, in Barbie Land. When Ken has a mishap at the beach, he is whisked off to a mobile medical clinic and heals within seconds. Everyone attends Barbie’s blowout party. All the…
One morning last week, I turned on my phone, but it powered down almost right away. I turned it back on and checked the battery. It was at 0% after being plugged in all night. I just had the battery replaced the previous week, and now the phone wouldn’t charge…
I’m weary after 13 years with the ALS of my husband, Todd. I started therapy in hopes that I’d get some help. At our first session, I told my therapist that I’d like homework, such as a journaling prompt. A couple sessions in, she pulled out…
After my husband, Todd, was diagnosed with ALS, I was overwhelmed by grief and filled with anxiety about the future. How was I going to manage as a single parent with two small children? How would they cope with the loss of a parent? What would I do…
When ALS first caused my husband, Todd, to need a wheelchair, he realized he couldn’t recline too far in it or he’d get stuck there; his arms were too weak to reach the joystick or seat-control buttons. To compensate, his durable medical equipment technician added an egg switch to…
A few weeks ago, I was catching up with a friend of mine. Among other topics, we discussed what I might do for work after my husband, Todd, is gone. He has ALS, is paralyzed, and needs noninvasive ventilation. His lung function is quite poor, and I could…
I’ve lived in the shadow of my husband Todd’s ALS for the past 13 years. My days have been clouded by the bitter reality of knowing that life will only get harder until it’s over. The daily stresses of my caregiving are intense: clearing his airway when he…
Recent Posts
- Long-term air pollution exposure shows no clear link to ALS in UK study
- Masitinib trial insurance offers a safety net for ALS research
- Spontaneous mutations may underlie some sporadic ALS cases
- A novel helped me process heavy questions I face as an ALS caregiver
- Study links protein, fat regulator to nerve cell damage in ALS