What Are Some Narcolepsy Support Groups?
Support groups and organizations are great resources to find help with narcolepsy. What groups have you heard of, or are a part of? How have these organizations helped you?
Im in a very similar situation. I was just diagnosed a couple of weeks ago (at 45) and would like to know this as well!
Welcome to the community,
! I'm glad you found us. Have you checked with your neurologist and/or local hospitals for any in-person support groups? Are you on a good treatment plant now that you've been diagnosed? Wishing you the best. - Lori (Team Member)
Thanks Lori! I've really got to change my member name - my actual name is Thomas. I was diagnosed about 4 years ago. I'm 44 almost 45 years old. It has been hard to adjust to the diagnosis, eventhough I have been living with narcolepsy probably since 17 or 18. The most frustrating part is that my lovely wife doesn't get it, and she doesn't seem willing to invest any more time in understanding my daily battles with excessive daytime sleepiness. It's not just her of course, but it is the relationship that is the most important to me. Anyway, I'm knew to reaching out to these kinds of forums...I will be sure to check back in soon! Cheers
whoa, sorry, lots of typos and improper grammar. New instead of knew for example. Enjoy the weekend my people No worries about the typos, Thomas! If you click on the gray dots to the right of "reply" at the bottom of your comment, you will see an "edit" option. If you ever mistype something and it really bothers you, you can always click on that or reach out to a moderator. We can edit your comment for you. But know that typos are normally when we are feeling emotional or writing quickly. We certainly won't judge you for them.
I wish you had more support from your wife. Has she ever come to a doctor's appointment with you? I wonder whether that might help. Some people find it hard to show compassion for people they love when they are diagnosed with health conditions because the situation is less frightening if they ignore it or deny it. Could that be what's happening with her? I hope she comes around over time and that you find in-person support. I'm glad you found us though. Warmly, Lori (Team Member)
lol. I am here looking for a support group. I'll come back when I find one....
Hi
. Welcome to the community! I'm glad you found us. We do offer support and we are here for you. We are just curious as to what other support groups people find helpful, especially in-person support. Knowing what else is out there and how it helps can help us address our community's needs better. Have you been diagnosed for long? Best wishes. - Lori (Team Member)
