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Interesting article: mind/body connection for people with MS

anaishunter profile image
16 Replies

Very interesting article on a new research. I like the direction it's taking in rebuilding the mind/body connection in a different way for people with ms so that a more positive experience comes out of it.

Link to Article: healthline.com/health-news/...

Link to full research: (it's too bad it's not accessible for free. I did not get it but will keep an eye on whether this becomes free at some point). journals.sagepub.com/doi/10...

"For people living with multiple sclerosis (MS), one’s own body may no longer be taken for granted but may become instead an insistent presence...Rather than aiming at bodily dis-appearance, health care professionals should therefore consider ways to support bodily eu-appearance."

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anaishunter profile image
anaishunter
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16 Replies
Juliew19673 profile image
Juliew19673

Very interesting and I agree with the "brain body disconnection." I feel like my brain and body had a huge fight and do not communicate any longer. I see DMT treatment as the Therapist for my brain/body trying to bring the 2 together.

anaishunter profile image
anaishunter in reply to Juliew19673

I read it as the DMT help fight and fix the problem at the chemistry level but it leaves a lot of opportunities to use mindfulness (or similar techniques) to redefine how the body and brain interact when you have MS.

erash profile image
erash in reply to Juliew19673

I’m using self hypnosis to remind my body of what it once could do. During one visualization I felt myself running in the surf and began to smile with joy...and then became tearful wishing I could be that person again. But the visualization allowed me to relive the experience and it was wonderful!

erash profile image
erash

Fantastic article. Thank you for posting. I could so much relate to this. I am so very aware of my physical body...sometimes to the point of distraction. Thing that should be automatic functions, walking or even breathing, require conscious effort.

Juliew19673 profile image
Juliew19673 in reply to erash

Amen! It is a cognitive work out. Walking around and I, too, have become Hyper Aware of my physical abilities, which is what I am cognizantly aware of 24/7. I hope that becomes 2nd nature!

erash profile image
erash in reply to Juliew19673

IDK it is a challenge since they (abilities) change from day to day, moment to moment. I remind myself, be kind to myself and accepting of what I can do at that moment.

anaishunter profile image
anaishunter in reply to erash

Good point. How can we ever expect it to become second nature while how our body function changes every day! Part of the obsession for me, is what is different today? is anything better? worse?

Iona60 profile image
Iona60 in reply to erash

The frightening one for me is swallowing, which I have connected to the amount of baclofen that I take.

cheshcat profile image
cheshcat

Thank you so much for posting this article! Since "they" can't seem to decide if I have Lupus or MS (I have RA as well), I decided to start joining the land of the living again. It started to feel like they were managing me until I die (do you know what I mean, like no one even expects much). It's been interesting. I was actually going to post last week because sometimes I don't know how much I should "listen" to my body. My mom says I just need to ignore how talkative it can be but I'm not sure she realizes how hard that is.

It's a weird balancing act of listening but not letting it get in the way. At the same time listening close enough that I don't hurt myself. I re-joined the gym and they are writing a program I can do the days I'm not doing water aerobics in the weight and equipment room.

Getting "sick" has been mentally more challenging then I ever thought possible.

erash profile image
erash in reply to cheshcat

It truly is a balancing act between awareness and obsessing 😬

cheshcat profile image
cheshcat in reply to erash

erash So Very Much!!! After my last flare earlier this year I have more left over then my other flare(s). So my body can start talking loudly and breaking through my meds. But I can't let it limit me or I'll just be on the couch until I die. At least that's what I've decided ;) The only time is when my right leg starts catching on things or my tongue stops working correctly, then I know I've done too much that day. Or the TN starts warning me, then I start worrying!

Juliew19673 profile image
Juliew19673 in reply to cheshcat

I'm sure your Mom was giving "her best idea of advice" similar to when I was DXED and my brother flew out to assess me and suggested "maybe you should get a life coach" He thought it was just depression and that's why I slept all the time. I gave him a book to read and showed him my MRI of my brain, explained what the stars were (19 lesions). It took him months to start believing I was EXHAUSTED because of MS! I know my family is trying to help, but they know nothing of MS - STOP THINKING YOU KNOW BETTER THAN I OR MY NEUROLOGIST!

cheshcat profile image
cheshcat in reply to Juliew19673

Juliew19673 I know my mom means best but I try to tell her, I have to live inside my body mom! It's not like I can delude myself into thinking it's NOT being talkative.

People really come out of the wood work don't they! I try to be kind but sometimes I want to be snappy about it. 99% of people have absolutely no idea what they are talking about, it's only those people who live with chronic auto immune diseases that really understand (my mom actually has RA so she understands a lot but she never had neurologic symptoms).

Juliew19673 profile image
Juliew19673 in reply to cheshcat

Yes! Add in neurological isues and get back to me. I wish that anyone who questions me could live in my body for a week.

cheshcat profile image
cheshcat in reply to Juliew19673

Juliew19673 amen!!

Corran731 profile image
Corran731

This article really resonated with me. Thanks for sharing...

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