My step-dad was diagnosed Easter week of 2018. He had been dealing with increasingly severe symptoms for over a year, but he and my mom couldn't afford the major tests that were needed to diagnose him. It didn't help that they live in the middle of backwoods North Florida, where people with a decent education are few and far between.
Since he's been diagnosed with PPMS, they have had increasingly serious financial problems, are having to sell their house in order to pay for medical insurance so that he can go to doctor's appointments, get into the good hospital when he gets bad, and getting the Ocrevis (sp?) treatments. Some of the losses he is living with at the moment are memory (long and short term, retrograde and anterograde), balance (and trying to maintain normal gait so as not to damage his hips), and communication. There's a lot more, but those seem the most prevalent when I see him every weekend.
I am 32 and have been married for 14 years, but went through some severe issues personally and interpersonally when my husband was diagnosed with a serious but largely manageable illness early last year. I live a couple hours away from my mom and step-dad, and teach elementary at a school I can't stand. I am hoping to get a closer job when my apartment lease expires in July 2019. My husband and I drive up to visit them most weekends. Partially I try to provide emotional support, but we also do construction on my parents' house so that they can sell it. My step-dad was a Building Contractor for 40 years, just gave up his license this year following his diagnosis. There are a lot of things he has forgotten how to do, and a lot of things he really, really shouldn't do for safety reasons, but since they can't afford to hire skilled help, we try to donate our time on the weekends. I so desperately want to help more, but I have a fair amount of personal debt that I can't even begin to touch until I can find a much better-paying job (small-town teacher at a private school in Florida = broke as a college student).
The environment around my mom's house has become increasingly depressing, tense, and unpleasant. It used to be my source of refuge when my own world was out of my control, but now I can't stand being there. My step-dad himself is horribly anxious and depressed, not sleeping, and ignoring the doctor's advice. The doctor herself is uncaring and impersonal and largely unhelpful, as she was recently appointed to head up a huge research study, which it seems has made her a pretty uncaring doctor as research, not patients, is her top priority. My mom, always a bundle of nerves, is now at a whole new level. She hates her job, but with home being so miserable, she now has no place to find solace or relaxation. I am watching her deteriorate along with him, aging every week.
I can't help financially, and I can't do very much to help by being around personally. I am hoping that educating myself and meeting people more caring than that awful doctor, and more knowledgeable than my or my siblings' quick Google search, will be ablebto help in some way. I am concerned for the mental health of my entire family at this point, and the physical health of my mother, as well as my step-dad, of course.