Yes, 2.5 years into this disease it is the good, the bad, and the ugly.
First the GOOD:
I have good local doctors who care about me and want to help.
I have great neighbors who will go on walks with me and have boys for my son to hang with.
I have a wonderful husband who is my caregiver despite his own health issues.
I have a wonderful 17-year-old son who spent his two week spring break with track practice and meets and 4 Eagle Merit Badges and his Eagle project proposal.
I have friends and family who check in on me and help out when needed.
My cousins Salli and Alec, whose brother died of ALS, and my brother Pete are all participating in the UCSF ALS and Dementia study. Their participation will get us closer to a cure.
I went back to aqua fitness once last week.
I decided to add some color to my hair to counteract the bad and the ugly.
What I have thought was allergies (and some of it was) is mainly reflux which is now so prevalent that I have to be careful. Even putting on my shoes or bending over without knees spread causes reflux. And every meal causes reflux too. And the associated headache may be migraines although there is a sinus component. But I got a prescription for the headaches and we got a Sleep Number Bed on order. I have been using a wedge but I slide down and wake up with reflux in my mouth. I will try sleeping in a chair until the new Sleep Number Bed that we ordered arrives.
I have to suction out my throat, and after a few days I have to clean it out and boy does it stink. At least I can still clean them myself.
I have to wear Depends every day now. What feels like passing gas could very well be a bowel movement.
But there have been limb involved patients who told me they were jealous. But I don’t think there is any easy path with ALS. But there is always good with the bad and the ugly.