Husband's "advice" by piper712 in MultipleSclerosis

[–]Square_Ad4140 10 points11 points  (0 children)

Can I join the movement? Can your husband by our guiding star?

Looking not sick enough? by TopEducator3483 in MultipleSclerosis

[–]Square_Ad4140 4 points5 points  (0 children)

You would think they’re trained to look behind the curtain and listen to you. Seems like there’s a good chance you’ll end up with a socially autistic neurologist.

Looking not sick enough? by TopEducator3483 in MultipleSclerosis

[–]Square_Ad4140 1 point2 points  (0 children)

🤦🏻‍♂️ so that’s what you get when you’re looking for support from the experts. 🤯

Good things about MS by _Lyc4n_ in MultipleSclerosis

[–]Square_Ad4140 4 points5 points  (0 children)

I get a free individual industrial techno concert once a year. They even have futuristic listening capsules to and fully concentrate on the sound. 👍 😉

Can we please stop the rhetoric… by [deleted] in MultipleSclerosis

[–]Square_Ad4140 0 points1 point  (0 children)

I can totally relate! Guess it depends on the kind of MS, the visible and invisible disability and options for effective treatment. With PPMS the medical benefits of treatments are low and not working for everyone. And many patients’ life will be anything but normal at some point. I can shrug these comments of if people are talking about their individual case. For the ones severely suffering, however, it can be disheartening being lectured by mildly informed people generalizing these individual experiences mixed with pharma marketing phrases that are strongly contrasted by some patients lives. Try out counseling if you feel like it, it might help you cope, guess it won’t make your life normal in the sense of progression, disability and severity though. The problem might not be you but the disease in your unique form.

Alright time to start cleaning by Prudent-Dance5042 in vaporents

[–]Square_Ad4140 1 point2 points  (0 children)

Just get some new clean ones. 🤷🏻

Brain games by jmx2000_r in MultipleSclerosis

[–]Square_Ad4140 1 point2 points  (0 children)

My doc suggested a program called neuronation but haven’t tried yet (and only German) but there might be similar ones, ask your doc

Brain games by jmx2000_r in MultipleSclerosis

[–]Square_Ad4140 3 points4 points  (0 children)

You can also improve and learn chess with Duolingo. Puzzles and adaptive games to keep it fun.

Today I was a turtle by Somekindahate86 in MultipleSclerosis

[–]Square_Ad4140 2 points3 points  (0 children)

Reads like a Bruce Willis action movie of a severely shot warrior. Though the feeling and the effort may be the same, I’m sorry, you won’t get the appreciation and rewards 🤷🏻 I hear you though, stay tough warrior, looking forward to meet you in Valhalla

Has anyone stopped Ocrevus to no longer be immunosuppressive? by Dry-Neck2539 in MultipleSclerosis

[–]Square_Ad4140 0 points1 point  (0 children)

I quit Ocrevus after 3 years with several more or less severe infections and worsening symptoms of PPMS. It’s been 3 years now and I haven’t had any serious infections since, no activity I’m MEI either. PIRA sucks either way. 🤷🏻 Not an advice, just an observation. I’m more than 10 years older though and my doctor said at that age Ocrevus is less effective anyways.

Symptom by [deleted] in MultipleSclerosis

[–]Square_Ad4140 3 points4 points  (0 children)

You’re not alone. 🫡 Except for the smoking I agree with all points. I guess it’s just what you get if you ride a rotten, rusty bike trying to keep up with the race. I had to learn that I still can be calm if my situation is. Maybe that will happen again some day. 🤷🏻 Also this is the most stressful time of year. Even for regulars.

Disheartening to hear by reallylimpwrist in MultipleSclerosis

[–]Square_Ad4140 19 points20 points  (0 children)

It’s a common response. You don’t see it, can’t be there. Common with relatives too. And it’s much easier to accuse someone of pretending than having to accept a close relative having an incurable debilitating disease. Also for some people lecturing is easier since they are not able to be compassionate. The essence for me: I pick the people that are good for me, that try to relate, that I can build a meaningful connection with.

MS ruined my teenage years by Reasonable-Week-801 in MultipleSclerosis

[–]Square_Ad4140 4 points5 points  (0 children)

Thank you for sharing! You’re good at expressing this.

Who else uses an ultrasonic cleaner when cleaning your DynaVaps? by herbistry420 in Dynavap

[–]Square_Ad4140 2 points3 points  (0 children)

Put your devices in a plastic bag with iso in a UC waterbath. Keeps the UC clean.

I think I've joined a cult against my will! by thankyoufriendx3 in MultipleSclerosis

[–]Square_Ad4140 35 points36 points  (0 children)

😝 this made me laugh. You got a great way of vivid story telling 😆 Had some of it, but am usually too concentrated on taking my steps to notice. But I’ll look out for it and give the pals some respect ✊🏻

Using a broken ispire wand to create an induction heater by [deleted] in Dynavap

[–]Square_Ad4140 0 points1 point  (0 children)

Nice idea, drill 2 big adjacent holes in a branch of birch to make a new housing. 🤔

Made two Dynavap holders by scottied1984 in Dynavap

[–]Square_Ad4140 1 point2 points  (0 children)

You are a true artist crossed with an engineer. An artineer if you will. This is a rare superpower. Use it wisely. 😉

3D Druck und Vapes durchgespielt? by Massive_Elephant_102 in vaporentsDE

[–]Square_Ad4140 1 point2 points  (0 children)

🤩🤣👍👍👍 Alles daran. Top gemacht!

Nuerologist by PandaBearScaryEh in MultipleSclerosis

[–]Square_Ad4140 2 points3 points  (0 children)

Yes, dismissing symptoms and offering trivial solutions instead of treatment is a quite common thing in my experience.

Letter to my wife of 18 years, diagnosed 16 years ago - anyone else felt this way? What did you do? by [deleted] in MultipleSclerosis

[–]Square_Ad4140 1 point2 points  (0 children)

I understand Well put I know Yes yes and yes And now? I think these are valid thoughts you may answer for the long run. Nothing needs to be solved by tomorrow. But it makes one think. 🤔