- Jun 12, 2008
Hi. My mom has PLS (recently confirmed-confirmed, after 8 years of symptoms and 5 years in ALS or PLS limbo). As it is such a rare disease, I've found it enlightening coming on the forum and reading all your postings. I also wanted to know if any of you had experienced some of the following: My mom 'walks' on her toes - meaning she'll launch off a wall/chair/bed and aim for the next wall propelling herself forward, because she is on her toes (although she can put her heels down, it is only when she is standing)...this has gotten progressively worse (although over 8 years - so I think we're lucky), along with her balance. Her speech has gotten much quieter, but only really slurs when she's exhausted (you can still understand her though). She moves around the house like this (for others not used to it, they flail about trying to prevent it, but the doctor encourages any movement, even if it is this). The stiffness is in the back of her knees. She also has exteme difficultly turning (she does little walk-around circles), getting up from chairs although walking up stairs until recently was her 'badge of honour' - as she did this relatively quickly (now however, her toes drag on each step and it takes about 15 minutes to get up a flight, although she does it). Doctors recently thought that it might have gone into Parkinsons as she was seeming "parkinsonian" (their word, not mine). Has anyone else gotten this? It appears she is now a "weird hybrid" but definitely more PLS than anything else. Baclofen failed badly and she basically shut down on it, and wasn't able to move - she is not on any meds as she is hyper-sensitive to all of them (i.e very poor mobility reactions for prolonged periods). At the moment, we've had to up her homecare (this is provided free because we live in Ontario - although it is bureaucratic) as she becomes incontinent when she cannot get to the bathroom in time (and is lying about it). Has anyone else with PLS found that general incontinence is a problem, or is it just with reduced mobility that it becomes a factor? This is her #1 quality of life issue right now. She's been such a positive go-getter in this overall (carrying out volunteer work from her scooter, tutoring kids as well), but now the point has been reached where her basic functions need far more support, in order for her to be able to continue this good stuff. I was just wondering about the presence of some of the above in other individuals with PLS...Thanks!