Hello. New member here and I thought I would introduce myself. Liz has shared shared my life for 40 years, is in her early 60s and has PPMS. After years of this disease and, pretty much, dealing with it in private (friends know of her condition but she won’t discuss it except with medical practioners–) I thought I would dip my toe into the online world on here.
It’s a demon, isn’t it? She was diagnosed in 2006 and had to give up self employed work in 2009. That was hard as it was something she loved but it had become impossible to continue. I am in the same line of work but Covid has caused real difficulties but some stuff is done at home. Until that hit she had been doing ok. She had gone, in time, from one cane, to two canes, to a walking frame indoors and me propelling her in a wheelchair outdoors, but was still doing ok. She has hated the way MS has contributed a great deal to the loss of her full independent living, as we live in a flat on the top floor of our building. Stairs are a **** but, until recently, she has managed the 6 steps inside the flat, up and down to the bathroom and, with my help, the stairs outside the flat.
Now, for whatever reason, her confidence and ability has gone on the inner steps completely. In a fortnight. Just gone, and getting worse. I could go into detail but this is just meant to a brief introduction about us and being too depressing a post would just put you off! Nevertheless I am now scared to leave her alone as she has fallen a couple of times (not down the stairs, thankfully). This morning she got to the top of the small stairway and froze. She couldn’t move and I had to virtually carry her down and can’t get back up them without my help! Now she goes down on her bum but then can’t stand up and I have to help get her onto her feet.
We were reconciled to the decline that PPMS had in store for her but the “fall off the edge of a cliff” of the last two weeks, where her ability has dramatically lessened, is a new one and hard to take. We hadn’t been aware that could happen!
Has anyone else suffered that dramatic drop off of ability? Can I ask how you coped? It doesn’t help that she hyperextends one knee and now, damn it, the other knee, reasonably normal, hurts as well especially when walking
That’s her in a thumbnail sketch. I am usually more cheery than this but shrugs, it’s just one of those days so I have finally decided to go online with it all, hopefully to see if anyone else has had a similar experience and how they coped. Liz refuses to contact the local authority to see if there is help for her and I know that, at some stage, my work will talk me out again; in fact I am dues to travel in just over a week and will be away overnight. I am at a loss as to what to do. I can’t get out of it but how can I leave her?
Anyway, partly relieved to get some of it off my chest here as Liz just refuses to address her current state.