Recent content by BlsdMama

Add in Digestics. You can find them on Amazon. They'd be in addition to Miralax.

@Statius@ - I'm not sure if I realized you're so close to me, Ed? I'm just outside of Cedar Rapids. @wmilo - I'm not sure how I'd survive without the PWC. Trying to wrap my head around it. Well, I've been an incredibly slow progressor for 5 years. I guess at some point I was bound to have...

I have two policies and both have accelerated death benefit, meaning that I can collect half the policies before I die when I am deemed to have 12 months or less. I've been a very slow progressor, initially diagnosed with PLS, then SPS, then PLS again, and finally 1.5-2 years ago cementing the...

As I read what you quite, the words, “I feel..” jumped right out at me as very reassuring. Most of us here felt nothing. Feeling and sensation is peripheral nervous system. ALS is Central nervous system. This means we were shocked to have something fail (or fall in my case) because everything...

Thrilled for the results of your EMG. Benign fasciculations are a real thing and the benign part is especially lovely. ;) I’m coming late in the Q&A, but I, as a super slow professor, has drop foot and tripping falls (pleural) before any twitching so I hope that’s further consolation!

Unlikely. My grandmother died of FTD so I was fully tested. Mine is sporadic. My dad and his teen siblings are still all healthy in their 60s and 70s. She can be tested if she is willing and you want to know, but take comfort that familial ALS is only about 10% of cases and even if you inherit...

@rmt Oxybutinin works to help the urgency. However, it dries my mouth and throat so much that my speech is inaudible so I rarely take it.

I’m also UMN dominant with severe urinary urgency. Interesting this symptom seems predominantly UMN. I’ve had several accidents. I was prescribed something that does seem to help, however it dries out my throat so much that it impairs my ability to speak.

After much reading on here, I made some calls. The home medical company that ordered my pwc can order InvaCare. I wanted Span America UltraMax. I found a mobility company that can do the UltraMax but he worries that using my bed/mattress purchase on my insurance will affect their willingness...

I love tizanadine. It can be hard on the liver so keep an eye on that. I despise Baclofen and it makes me feel like a landlubber on a ship. I am giving Flexerall a try because I don’t want to tax my liver. Tizanadine has a cross so it can be split into fourths. I find I can take 1/4-1/2 and stay...

All of you have been so helpful. I can't tell you how much I appreciate it. @Larrytbm - thank you SO much for the link. When we redid our kitchen flooring two years ago, a fella helped us pick out Gravity tile - plank that has held up SO great. I've wished (often) that we had a choice in that...

It is a silly thing, but I'm wondering about flooring. I recognize it as a luxury to wonder about something so unimportant, but we also don't want to invest in something that won't hold up, kwim? I have wood plank LVT that I LOVE... But it's pulling apart as my wheelchair turns and pivots on...

Al - yes!! I don’t dream often either, but the vividness of walking sticks with me. I wake up thinking, “Hope silly! Of course I can walk!” Then I remember… and I don’t want to move my leg to find out which “reality” is real.

Adding, because, LOL, even with my most healthy body, running would never have been high on the “hopes for the future” list. ;) Although… should ALS be cured tomorrow, I could be persuaded to take it up.

AlDowns, I see you are new and I thank you for being positive. I actually meant literal dreams - as in what happens when I sleep. Five years in and 45, I’m incredibly aware all my dreams/expectations/hopes for the future have had to be adjusted but I do appreciate your positivity. It’s so very...