Multiple Sclerosis

[desura]

Family member has it. What to know? How to best comfort her?

 

[OverVolt]

When they feel up for it take them out to eat .

I would focus on stress relief and sleep. Good food, comfortable bed, things to do when they don't feel well. Let them figure out how they want to handle treatment.

Maybe introduce them to a new low-key hobby, like reading or something. I feel so long as you're supportive they'd be grateful.

 

[MrSquished]

There's gotta be better online support groups than ATOT

 

[gorcorps]

My mom has it. I'm not quite sure how to answer the question, because your OP implies that you think everyone with the same disease wants to be comforted the same way. It's entirely up to their personality. My mom is a strong lady who used it to focus more on losing weight and getting healthier in general. The way she was comforted is we'd pass along new healthy recipes that we tried and liked. It showed her we were eating well, and also keeping her in mind which is really all she could ask for.

 

[desura]

My mom has it. I'm not quite sure how to answer the question, because your OP implies that you think everyone with the same disease wants to be comforted the same way. It's entirely up to their personality. My mom is a strong lady who used it to focus more on losing weight and getting healthier in general. The way she was comforted is we'd pass along new healthy recipes that we tried and liked. It showed her we were eating well, and also keeping her in mind which is really all she could ask for.

Yeah, I've been freaking out, especially reading about how people with it have trouble walking. I am starting to sense that talking about it scientifically or in discussion of possible treatment just is a bad idea because the picture is so grim. The cognitive decline is the most terrifying.

 

[gorcorps]

Yeah, I've been freaking out, especially reading about how people with it have trouble walking. I am starting to sense that talking about it scientifically or in discussion of possible treatment just is a bad idea because the picture is so grim. The cognitive decline is the most terrifying.

The thing to keep in mind is you have no idea if it's going to get worse or not, really. My mom has had a couple flair ups, but the big thing is that she is finding what causes them. Greasy food is a big one for some reason, but also during allergy season she can struggle.

 

[desura]

The thing to keep in mind is you have no idea if it's going to get worse or not, really. My mom has had a couple flair ups, but the big thing is that she is finding what causes them. Greasy food is a big one for some reason, but also during allergy season she can struggle.

Haven't heard about the greasy food thing. Interesting. What are the best resources and online communities and resources? There likely is a ton of quackery out there that can waste so much time, provide so much false hope, scam so much money, etc.

 

[Carson Dyle]

Cannabis

 

[WelshBloke]

SIL has it, she's on some really expensive drugs that seems to be keeping it at bay.

 

[gorcorps]

Haven't heard about the greasy food thing. Interesting. What are the best resources and online communities and resources? There likely is a ton of quackery out there that can waste so much time, provide so much false hope, scam so much money, etc.

It may not have been fatty foods, it might have been carbs she started to cut and the greasy foods was just a bonus she cut. I can't remember, I'll have to ask.

That's a good question, I can ask my mom but offhand I don't think she's looked for a lot of specific communities. She pretty much just uses facebook to chat with old friends about what she's been going through when she has bad days. All she really needs is to vent once in a while and she feels better. Sometimes to me, sometimes to dad, sometimes to facebook... it all seems to help get through it.

 

[KMFJD]

I read yesterday that there have been some really promising result using stem cells to stop MS

http://www.nationalmssociety.org/Research/Research-News-Progress/Stem-Cells-in-MS

 

[desura]

It may not have been fatty foods, it might have been carbs she started to cut and the greasy foods was just a bonus she cut. I can't remember, I'll have to ask.

That's a good question, I can ask my mom but offhand I don't think she's looked for a lot of specific communities. She pretty much just uses facebook to chat with old friends about what she's been going through when she has bad days. All she really needs is to vent once in a while and she feels better. Sometimes to me, sometimes to dad, sometimes to facebook... it all seems to help get through it.

If your mom had a career before diagnosis, how has she managed?

What scares me the most is the quote that often people diagnosed have to leave their jobs within five years. Worse than that, they often have to use assisted walking and then wheelchairs.

My family member would be lost without her job. Being stuck at home would destroy her.

 

[gorcorps]

If your mom had a career before diagnosis, how has she managed?

What scares me the most is the quote that often people diagnosed have to leave their jobs within five years. Worse than that, they often have to use assisted walking and then wheelchairs.

My family member would be lost without her job. Being stuck at home would destroy her.

My mom didn't have a full time job, but has a small side business of cleaning houses (with a handful of regular weekly clients). She's also the type that would go stir crazy if she was unable to move and do stuff (she never just sits and relaxes no matter how much she needs to) but it hasn't affected her that much yet. This has been going on 2 years or so since the diagnosis, and her doctors are pretty sure she's had it for at least another year prior and just didn't connect the early symptoms.

As far as I know there's no telling how quickly the MS will progress (if it continues to progress at all). It may not progress quickly, especially if she responds to steroids or other treatments. My mom's doctors have tried to help her identify causes of "flair ups", where her symptoms get worse which most likely means she's developed another lesion on the brain or spinal chord. They connected her springtime allergies to flair ups so they're trying to be more prepared with a treatment option around that time if something happens.