Healthy lifestyle support group for people with narcolepsy

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rachrach16
rachrach16 Posts: 3 Member
in Motivation and Support
Hey guys! I wanted to see if anyone wanted to create a narcolepsy community group on my fitness pal? I was diagnosed with type one narcolepsy (narcolepsy with cataplexy) this Feb 2019 and I just wanted to have some type of support group through this app if anyone is interested! I think it’d would be extremely beneficial for accountability purposes but also to share ideas of what foods/exercises/lifestyle changes have helped you so you can live beyond your diagnosis.

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  • mom23mangos
    mom23mangos Posts: 3,069 Member
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    Hi! My adult son isn't active on here anymore, but he has type 2 narcolepsy. Are you familiar with http://madcapnarcolepsy.com/? She has a TON of really great suggestions for managing your symptoms with lifestyle changes. She is a big proponent of reducing inflammation in order to allow medications to be more efficacious at lower dosages. She also advocates making only one small change at a time in order to make sure the change sticks and not trying to do everything at once where you might get overwhelmed and give up.

    Xyrem made the biggest impact on my son's quality of life, but unfortunately he can't take it right now and is having to try out alternatives. Cataplexy makes things even more difficult so hugs to you.

    I just saw a trailer for a movie that I guess never made it to theaters here in the US that looks rather funny/touching about a man with cataplexy who is afraid of relationships for fear of extreme happiness triggering a cataplexic attack (Martin Freeman). https://www.imdb.com/title/tt3009772/

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