Hi, new member here, hoping to find other people to talk to who are dealing with some of the same things.
I’m married to (and full-time care for) a woman with PPMS. She already had MS and was in a wheelchair, with no use of her legs, when we met 20 years ago. Over the years, her condition seemed to progress very little – less upper-body mobility and strength, a little less adept with her hands – but bascially no major loss of ability, still feeding herself, playing video games, having reasonably good energy levels and enjoying going out.
The last year or so, there’s been a significan drop in her energy levels, a lot of fatigue, on very bad days barely awake for more than an hour or 2, much better on other days – but a lot less energy than she used to have. And with the fatigue, sometimes comes confusion, speech difficulties (more that she struggles to find words, than difficulty physically speaking), sometimes finding it very frustrating that she can’t express herself as clearly.
It’s been a rough year for her (and tiring for me, as her care needs have increased along with the fatigue) – big reduction in her being able to go out, enjoy life as much as she used to.
Life’s still good – but been more of a challenge this year.