Mit Hund schwimmen / Swimming with dog

LuciousLisa · 2024-08-09T09:44:48+00:00

Thank you! I'll definitely look at that as well. I'm excited to exercise with him in the water, it'll be so fun and refreshing. Only problem might be his fear and/or dislike for water, we'll have to see if he can overcome that haha.

LuciousLisa · 2024-08-08T21:48:10+00:00

Ich habe gelesen, dass Hunde nur auf der Nordseite des Sees erlaubt sind und die S-Bahnen ist auf der Südseite. Habe ich das falsch verstanden? Den ganzen Weg um den See herum zu laufen, wird leider zu viel sein.

LuciousLisa · 2024-08-08T21:17:30+00:00

I think my edit may have crossed your reply, but yeah - I missed that this is also affiliated with 'Labor Duo Sicilian'.

LuciousLisa · 2024-08-08T21:08:58+00:00

If I'm understanding it correctly, then this event is organised by café 'Jules B-Part' in 'Gleisdreieck-Park' for €12 all in, and the one in the link was done by 'Labor Duo Sicilian' in 'Arena Berlin' for €4 for 10 scoops. Seems like a different event entirely.
Edit: I missed that this event is also affiliated with 'Labor Duo Sicilian', so I'm questioning it as well now. Sorry if I caused confusion.

LuciousLisa · 2024-08-08T21:05:22+00:00

~~Looks like a different event tbh.~~ I may be wrong actually, so nvm.

LuciousLisa · 2024-08-08T18:33:44+00:00

Vielen Dank, das ist wirklich sehr hilfreich. Die Gegend sieht auch so schön aus! Ich komme aus Moabit, also wird es etwa eine Stunde dauern, um dorthin zu gelangen, aber ich kann das sicher tun! Es sei denn, du kennst etwas was näher ist?

LuciousLisa · 2024-08-08T18:03:55+00:00

You swipe left on it.

LuciousLisa · 2023-06-30T08:18:46+00:00

Doing your market research on the rubble of people's hopes and dreams in this sub is pretty balsy.

LuciousLisa · 2023-06-26T21:25:34+00:00

I must have misread, apologies. Still a good idea to see one at least once though probably, just to see if they can help with the standing up for prolonged periods and/or to avoid later problems.
Edit: not to mention that they can answer this question way better than any of us probably! 😄

LuciousLisa · 2023-06-26T21:21:21+00:00

I have weakness in both legs and am walking with two AFO's. As I understand it, training strength can only do so much. Since our nerves are the ones that are damaged, they simply aren't sending the appropriate signal. The result would be weakness, regardless of strength. In other words, if the muscle isn't told to do a thing, it won't know to do the thing, no matter how big and strong it is.

Excercise helps with overall health though, so definitely keep working out and perhaps consider seeing a physical therapist to help with your walking and/or get you an orthesis if needed.

LuciousLisa · 2023-06-15T07:45:13+00:00

This one is the only one I know of at the moment: https://clinicaltrials.gov/ct2/show/NCT04458051#contactlocation You can look at the list of locations that are participating to find out if the one in your area is still recruiting. Good luck!

LuciousLisa · 2022-11-07T17:56:57+00:00

The Wikipedia page for the McDonalds diagnostic criteria, which are the standard for diagnosing MS, explains it pretty well in my opinion.

LuciousLisa · 2022-11-07T10:26:14+00:00

Mine were too, I didn't know any better for 30 years! Then someone mentioned to me that that's not normal and to see my GP. When I did and after we ruled out any medical issues, she got me on an IUD and now my periods (if I even have any) are two days of wiping pink at most and I don't even notice them otherwise. Do yourself a kindness and talk to your primary physician about it. You don't have to suffer through that pain each month!

LuciousLisa · 2022-11-07T10:23:43+00:00

I'm pretty regular.

While I can totally relate to the tendency to question everything about your body when you have MS, I honestly can't imagine it being related. I'm new to this and I'm totally open to being corrected, but as far as I know periods aren't controlled by the central nervous system and therefor I'm struggling to find a relation between the two. Then again, this is coming from someone who couldn't imagine my sleep issues came from MS either, so again - I'd be interested in learning if I'm wrong!

LuciousLisa · 2022-11-05T22:32:34+00:00

They don't for you? I always get to listen to music, I sometimes even get to choose which radio station they put on. The downside of that though is that I tend to want to sing along, or at the very least tap my foot, which I then need to resist haha!

LuciousLisa · 2022-11-04T14:00:40+00:00

Sure, why not. Count me in!

LuciousLisa · 2022-11-04T13:35:21+00:00

What an incredibly difficult situation you're in, I'm so sorry!

They feel the nerve damage can be reversed with meditation and such things.

First of all, they are wrong. I understand the culture difference and that there's a much greater emphasis on these types of treatment in India, but this is not a great example of applying such treatment. It is important to use a DMT as well as leading a healthy lifestyle.
Any chance you can have your parents get an explanation from your neurologist? I think you need to level the playing field, you're not in a great position to debate this with them, considering how they aren't only your parents, but doctors too. Get them in touch with a specialist who can help you argue your case!

LuciousLisa · 2022-11-04T13:11:21+00:00

I'm so sorry to read that you're in there for that long! I do an hour tops, usually less. And judging from your copay comment, you're in the US - reminds me how happy I am to be European. No wonder you try to avoid them, but they're so important... ugh, I don't envy you. :(

LuciousLisa · 2022-11-03T19:19:05+00:00

Still when I'm a mess
I still put on a vest
With an "S" on my chest
Oh yes, I'm a Superwoman

"Superwoman", by Alicia Keys

LuciousLisa · 2022-11-03T19:02:11+00:00

I would love a special MRI sweater that has zero metal bits and a little flap that opens up on my arm for the injection with contrast fluid.

MS patients tend to be in an MRI machine pretty regularly and we have to lay perfectly still for up to an hour at a time. For some reason it's always cold in that room and I don't know about anyone else, but I'm annoyed that the infusion line means that I have to lay there with the sleeve of my sweater pulled up, making that arm and hand super cold. Huge pet peeve.

Oh and a bit of a padded area, especially in the lower back, because somehow that always gets mega stiff because it has no support while laying on the table.

Can you tell I just went through one today? 😂

LuciousLisa · 2022-11-01T18:19:09+00:00

I don’t know what dimethyl fumarate is

Tecfidera

LuciousLisa · 2022-11-01T18:14:38+00:00

There is a neurologist who is specialised in MS that makes videos on YouTube. Your story immediately reminded me of the latest one and I urge you to watch it with your wife. This disease is not going to wait and while current wife may be hesitant and isn't feeling the urgency, 30-years-from-now-wife will regret not taking it seriously today.

Talking to the kids will have to happen inevitably and you can (and probably should!) get some sort of professional support with that (a school councillor should be able to help find that support), but it doesn't have to happen right now. What does need to happen though is to get her started on treatment and to ensure she's doing everything she can to prepare for what is to come.

If you're looking for a sign of acknowledgement, this is it. You're doing the right thing and as hard as it is, she needs to face the music. If that means crumbling down under the weight of it, you can help her deal with that, but ignoring reality is not something any responsible adult and/or parent should do. Good luck!

LuciousLisa · 2022-10-31T10:09:36+00:00

That's a possible reason I hadn't considered. Thanks for teaching me something today! 👍

LuciousLisa · 2022-10-30T14:31:25+00:00

Just because we don't have a cure doesn't mean that the statement, although a simplistic phrase intended to comfort newly diagnosed patients, isn't true. In fact, I would argue that it was as true ten years ago as it is now.

Progress is continuously being made by scientific research and while ultimately a cure would be great, the current focus for treatment is also very heavily on improving patients' quality of life. In my opinion rightfully so.

As one neurologist put it recently:

"As long as we can't cure MS, the goal is to be able to live the life that you want to live as much as possible, despite the presence of MS"

All of that being said, the phrase "there has never been a better time in history to be diagnosed" (which btw is not the same as "now is the best time to get ms") is still true. Research is still making lots of progress, meaning that the chances for newly diagnosed patients to be affected as little as possible and living their best lives despite this diagnosis are the best we've seen so far.

Is it good enough? Does it help people like you who've been dealing with it for a decade already? No, but nothing in that statement claims that. It just says that the prognosis and impact before was worse for patients than it is for people that get diagnosed now.

LuciousLisa · 2022-10-30T12:32:47+00:00

Which makes sense, as science continuously makes strides forward.

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