- Apr 4, 2020
Three months ago my husband was packing for a 3-week business trip in India. He had been complaining of shoulder aches and pain for about 6 months or so that the doctor thought might be the mattress or pillow and had been battling fatigue that was attributed to work stress and very very low vitamin D; but he was an active, seemingly healthy, workaholic. Today it took him 5 minutes to put his pants on. He came home from the trip saying that his brain was working fine but he was having trouble making his mouth form the words. It's been a whirlwind from there. Bloodwork, MRI, EMG, genetic testing (his mother passed from ALS in 1997), and Riluzole. We're now in a holding pattern waiting for the Radicava to be approved and Columbia to call with an appointment. I know I'm not alone, every caregiver has their own version of my story, but I feel alone and I'm terrified. I have 3 20 something-year-old kids who will lose their father and are facing the genetic realities this diagnosis presents, and I'm amazed at how fast this is moving. He says every day is a new adventure and its an accurate statement. He needs a will, an advance directive, shower chairs, information on speech aids, and I don't even know what else. He's started using a cane, after about the 3rd fall/stumble. I never expected him to be at this point already. I'm so ill-prepared. I'd gratefully accept any thoughts, advice, or words of wisdom from those of you who have been where I am now.