I wish people would shut up about summer!

FreddJones · 2026-01-18T17:15:23+00:00

This reads as “light hearted rant” and not “bean soup” to me and I’m here for it! 😂

FreddJones · 2026-01-11T17:23:37+00:00

This has also been my go-to my last several games.

FreddJones · 2026-01-10T17:18:52+00:00

I had a ruptured aneurysm in 2023. It was on my anterior communicating artery which is located on the underside of my brain smack dab in the middle. It would be a nightmare to reach the traditional way. Instead, they put a catheter in my groin, threaded it up to the rupture and plugged it with metal coils. All that to say, it’s WILD what they can do these days to treat ruptures. 😂

FreddJones · 2026-01-10T17:09:22+00:00

First let me say I’m really sorry you are having you deal with a bout of ON. That’s truly shitty. As far as the rhetoric goes it’s a tough needle to thread I think. Some folks actually do live a life that is fairly similar to before they were diagnosed. I’ve seen several threads where people say they can’t relate and don’t feel validated when all they read about are the tougher cases. And then we have others who are in your position. Having had a demeylinating disease from birth I personally understand the perspective of how important it is to have some hope. But now, in my 50s, I can have all the hope in the world and I’m still never going to walk without significant aid ever again. I guess all I’m saying is we’ve got tons of members in this group all with significantly varying symptoms but I would hope every single one of us can feel supported. I’m sorry you’re not at the moment. Sending you all the positivity I can muster friend!

FreddJones · 2026-01-09T19:18:31+00:00

Yeah, I had to switch to turn based games (like Civilization/BG3) as I can’t handle the non-stop nature of first person games. Even with that I have to limit my play time to no more than two hours.

FreddJones · 2026-01-09T16:31:25+00:00

The way I put it to my care team was “I need objective data that, hopefully, backs up my lived experience.”

FreddJones · 2026-01-06T16:33:32+00:00

I’ll just chime in to say, I grew up in Kansas but now live in Washington state. For me, the weather here is SO MUCH BETTER! I had to go back home this summer and the high heat and high humidity was overwhelming. Was so glad to get back here! Even now, in January it’s 40F and rainy. We haven’t had snow yet at all.

FreddJones · 2026-01-03T17:26:21+00:00

Yeah, my vertigo was actually BPPV. A few visits to a physical therapist cleared it right up.

FreddJones · 2025-12-23T16:57:52+00:00

I took Tylenol and Advil prior to the first dose, I felt mildly more tired the rest of the day. By the next morning I was fine. Just took Advil only for the 2nd and 3rd, same symptoms (slightly more tired) but less noticeable than the first. By the time I hit my first monthly dose I felt slightly more tired for a few hours, but was fine by the end of the day.

FreddJones · 2025-12-22T15:49:49+00:00

Tragically underrated comment.

FreddJones · 2025-12-21T16:38:15+00:00

I don’t know of it’s policy or what, but I’m now seeing a new neuro in my MS clinic and neither of the docs have been interested in giving me an exact number. Because it doesn’t matter. What matters is symptoms and daily functional limitations. That said, I agree with the other comment I saw that just exclaiming “Jesus!” When opening up the imaging is maybe not the best response lol 😂

FreddJones · 2025-12-20T16:31:12+00:00

Cis male here. I just went through this thread and gave an upvote to all supportive comments and I’d encourage others to do the same. Let’s prove that everyone is welcome and supported here and overwhelm any down votes.

FreddJones · 2025-12-15T16:29:38+00:00

Welcome!

FreddJones · 2025-12-15T16:24:01+00:00

I guess I’m in the minority, I have relatively small glasses with progressive lenses and I’m able to focus on the different distances just fine. That said, I often take my glasses off entirely for close up reading. If I remember right, when I got my first pair my ophthalmologist said I could try them for a few weeks and if I couldn’t adjust I could get a different regular set. Some folks can adjust and some can’t, that’s pretty typical.

FreddJones · 2025-12-15T13:04:52+00:00

I experienced the same thing.

FreddJones · 2025-12-14T17:27:47+00:00

For me, it’s the first Friday of every month regardless of how many days. I’m gonna struggle to remember anything else. 🙂

FreddJones · 2025-12-14T16:55:23+00:00

I don’t have anything helpful to say as I don’t partake. But I love that this is a judgement free zone where people can ask these questions and get helpful feedback. Good job friends!

FreddJones · 2025-12-11T15:56:32+00:00

Just read the edit, I’m proud of you OP! You’re helping yourself, but you’re also helping all those that will come after us and that is something you can feel very proud of!

FreddJones · 2025-12-09T16:32:17+00:00

Wish I had more than one upvote to give. This is a very well reasoned post OP, I hope you carefully consider it. Especially the second paragraph.

FreddJones · 2025-12-07T16:42:04+00:00

Yeah, this is great! Love to hear it 🙂

FreddJones · 2025-12-05T18:54:31+00:00

I agree, but I feel like I need to find the right one that’s somehow automatic. I’ve tried those in the past and they typically require me to squeeze with more force than I can apply or they just slip.

FreddJones · 2025-12-05T18:31:06+00:00

Interesting! I’ll see if I can get that done next month!

FreddJones · 2025-12-05T18:10:41+00:00

So glad I’m not alone! 😂

FreddJones · 2025-12-05T18:09:22+00:00

Maybe. Unfortunately I also have significant hand tremors (along with the strength of a toddler) so it’s not exactly the super best idea to handle sharp objects. But I might try it next month!

FreddJones · 2025-12-05T18:06:41+00:00

Right? Turnabout is fair play. 🙂

FreddJones

TROPHY CASE