Recent content by Trippy

Yes, I have intercostal spasticity too and get an occasional heavy duty cramp in the gut when I lean forward to stretch my legs. My entire body is riddled with spasticity, from my face to my feet..it’s very uncomfortable. I also had breathing issues with baclofen and use 8 mg Tizanidine before...

I have trouble with answering the questions too. I think people with mnd should develop a scale or improve on the frs

Kim what fish oil supplement do you take? There’s a dizzying selection and I’ve read that some are not good.

I also experience all these frustrations and am continually amazed by how people respond to me. It’s an interesting social experiment. My good friend and daughter understand me the best and are most patient and my husband hardly ever understands me. I also hate going out in public...what’s...

I dread going, even at twice a year. It’s an excruciatingly long and exhausting visit and I always feel depressed afterwards. I would like to go just for needs that arise but it’s a long wait for appointments.

Karen, you are referring to me and not Ted in your comment?

A great reality check thread. I suspect I may end up in the UMN-dominant camp but like to cling to PLS as long as they’ll let me. I would be more prepared for the possible future but it’s my husband that has a harder time with that. Hang in there everyone. We can do it.

Oh I do..have been for years

When I am clipped in my trike pedals and start pedaling I often have very active clonus. It is triggered when my ankles are at a certain angle (I’ve read it’s a 4 degree angle) and each leg bounces violently to its own beat, lol. I could never pedal without being clipped in with biking shoes...

I’ve been wanting to directly contact some of the lapsed members, particularly in the PLS sub forum, to check in. Wish I had their email addresses. I don’t post much myself but I do try to keep up and educated.

I’ve considered using an adult diaper for bike trips where there’s no bathroom for miles, or for travel just to avoid the hassle of a public rest area, but can’t quite get over that mental hurdle yet :confused: I used to have success peeing in a flexible cup on the bike trail or pulled over in...

I share many of the gripes here for sure. I don’t need a raised seat yet if grab bars are in the right place, but they never quite are. I usually manage to use public toilets on my own but I touch some nasty surfaces with my legs and hands trying to support myself to pull up my pants😟 When I...

Hi Fiona, I’ve been looking through old threads and found that you had a chronic coughing issue at one time. Do you still? Did you find something that worked? I have this too and it’s most annoying. I read a couple articles by NIH describing hyperactive cough reflex with possible causes...

I had what you described your father has for months following a rather traumatic stair chair episode last winter. Long story short, I was stressing over something and decided to go upstairs and shower and on my way up my head sort of “went away “ as you described. Then I got so spastic out of...

My speech started going about four years after my first symptoms and has slowly deteriorated over two years or so. Swallowing and chewing issues developed about a year later, however eating problems are not severe enough to consider a peg tube at this point. The doctor who is the head of the...