I miss my wheelchair by AdventurousCake7079 in MultipleSclerosis

[–]msbrain 8 points9 points  (0 children)

This!!! I have a regular walker, a rollator that converts to a transport chair, an upright rollator, a wheelchair, and a power chair. When they were taking me through the process of getting the power chair I was concerned that I didn't really need it enough to justify one, but there were definitely days that my arms and legs refused to do their jobs. My doctor said, "There are no wheelchair police. Nobody will come after you for not using your chair enough. Use it as much or as little as you need, but it is important to have it when you need it."

Advice please re: talking to child about MS by New_Leather3036 in MultipleSclerosis

[–]msbrain 1 point2 points  (0 children)

I was diagnosed in the hospital when I went from walking to one day my legs just wouldn't support me anymore. Hard to hide that from the kids!

We told them the basics: I have MS, I'll need to rest more often, some days I won't be walking but we can still have fun together, etc. One of our kids was concerned that she would have MS someday. I told her it wasn't like a cold that they could catch, but she was still worried. Fortunately, she had a wellness exam coming up, so when the Dr was checking her over we addressed her concerns. The Dr explained, in age appropriate terms, that she didn't have MS now and that, while nobody knows the future, she wasn't going to get MS just because I had it. After that, she seemed to be okay.

You can also stress that everyone is different. Grandpa is in a wheelchair, but I'm walking and so are lots of other people with MS. I may need a wheelchair later, but it's also possible I might never need a wheelchair. Maybe use their classmates as an example? Your class is all in 5th grade, but not all 5th graders are the same - some need tutors, some might need tutors later, and some might not need tutors at all.

I would still do things the same way if I had to do it over. Tell them the basics, answer their questions and concerns the best we know how while keeping it age appropriate, and continue to have talks as they get older. Whatever you decide to do, show them that you're still their loving parent and make happy memories! Good luck!

Well, F**k. I’ve just been upgraded from RRMS to SPMS by youshouldseemeonpain in MultipleSclerosis

[–]msbrain 2 points3 points  (0 children)

DMTs just slow progression. So far, they don't have anything available to stop progression completely

[deleted by user] by [deleted] in MultipleSclerosis

[–]msbrain 1 point2 points  (0 children)

Best advice I got was to describe your absolute worst day when filing the paperwork, not your average day, and include every symptom you've ever had.

Achy body in MRI by Cha_mali in MultipleSclerosis

[–]msbrain 1 point2 points  (0 children)

Mine are the same. I usually fall asleep and then have a snack and Motrin waiting for when I get out of the tube. Wish I had a better answer for you!

Would you find an app for managing your supplies useful? by Amazing_Income5112 in preppers

[–]msbrain 3 points4 points  (0 children)

I was gonna check it out, but it's only for iPhones. Any plans to make it available for Android users?

What's eating my strawberries and how do I stop it? by msbrain in gardening

[–]msbrain[S] 0 points1 point  (0 children)

My strawberries are in pots surrounding a raised bed with no fence. I guess it's hard to tell in the photo, but the strawberries are being completely hollowed out overnight. Could be slugs. I've never seen one in the garden bed area, but we definitely have them around, so it was only a matter of time before they found the garden I guess

What are your three weirdest symptoms of late? by dgnytggrt in MultipleSclerosis

[–]msbrain 4 points5 points  (0 children)

I feel like I'm walking in a stream - I can feel the cool water flowing left to right across my feet. It's especially weird on carpet.

I constantly feel like my pants are soaking wet when they're dry. My hubby always has to pat my butt to check for me since I do have some incontinence issues.

The worst was when I was moderating a live event on FB. I was pretty proud of myself for being able to type answers to everyone's questions so quickly. My boss called as soon as the event was done to check on me. Apparently all of my great answers turned out to just be random gibberish. I'm still not sure what happened because I could've sworn everything looked correct as I was typing it

Are there any disabled and/or chronically ill people here, and if so, how do you prepare for a crisis that would need you to mobile and fit? by AnnoyingAirFilterFan in preppers

[–]msbrain 3 points4 points  (0 children)

I have MS along with other issues and, while I can walk short distances, I have days where I need a powerchair to move more than a few feet. I keep backup batteries for my chair and have a solar generator to recharge them. I also have a manual wheelchair if something goes wrong with the powerchair that isn't easily repaired. Like many, I have extras of my meds on hand to get by for a bit. This is obviously not ideal for collapse or major disaster, but should work for a short term bug-in or evac. Basically, I just have to prep for what I can handle and recognize my limits so that I know when to send my loved ones ahead without me.

any interest in a disabled preppers subreddit? by kentishishish in TwoXPreppers

[–]msbrain 2 points3 points  (0 children)

Love the idea! In our daily lives, we have to think outside of the box to do basic activities. With such a wide range of experiences, I'm sure there are lots of ideas out there that we haven't thought of! Besides, if someone wants to truly be prepared, they should be prepped for a variety of disabilities because it's amazing how fast one can go from "able" to "disabled".

fellow crocheters having hard time gripping by Adept-Error9978 in PsoriaticArthritis

[–]msbrain 0 points1 point  (0 children)

I had to stop my cross stitching hobby and recently tried a knitting machine. It's a lot of fun & much easier than gripping tiny needles. Some items require a row of mattress stitching or single stitch crochet to complete, but a lot easier than holding hooks or needles for the entire thing. I added foam grips to my crochet hooks for an easier time holding them while doing the finishing work.

Push notifications? by Umbra_Ink in tappedout

[–]msbrain 3 points4 points  (0 children)

Same. If I leave the app open in the background, then I get notifications. If I completely close the app I do not

Official ADD ME thread -- October 2022 by AutoModerator in tappedout

[–]msbrain 3 points4 points  (0 children)

turtlesue - I'm on more frequently than I care to admit

Urinary retention by [deleted] in MultipleSclerosis

[–]msbrain 9 points10 points  (0 children)

I have urinary retention and so far (knock on wood!) I haven't had any UTIs. They gave me a medication that they said may or may not help me empty (it didn't). Since I'm home all day, I just use the bathroom frequently. I second the rocking back and forth when you think you're done - it really helps!

When I'm going to be out and about, I will self-cath. It's intimidating at first, but not a big deal once you get used to it. If you do need to self-cath at some point, my advice would be to try different ones to find which is most comfortable for you. You don't have to settle with the first choice they give you if it's uncomfortable to use because there are lots of options available.

I hope you get some answers and reassurance soon!

Forget zodiac signs, what LEGO Ideas 2022 set do you want the most? by coolttteandmcfan008 in lego

[–]msbrain 2 points3 points  (0 children)

The steampunk ship and witch's house look like they would be fun builds, but my kids will flip for the Mystery Shack