June 29, 2009 at 1:15 pm #13698
Hello there, I have sleep apnea, so I can relate a little. But the reason for me joining this group is my wife is 36 and has narcolepsy. She has her ups and downs like most of you do. The drugs are a whole other story as I’m sure you all experience and her depression and Isolation has gotten the best of her. She left me about 8 months ago, but we are not divorced. I still love her vary much and will always care no matter what. She always was discouraged because even though there are small groups like this, the world still seems to have a blind eye to this disease and it’s not fair. She has always wanted to get involved with doing something, like helping others, or making a difference, but there is not a lot to turn to or for resources. I mean you have them, but it’s not like having cancer or something, if you know what I mean. I am going to be making a web site for her, which will have a discussion line and blog and contact as so on for her. But what I after and really want to do is make a special ribbon for just narcolepsy. Yes I know there is black but its ugly, it doesn’t do justice for any of you and there are about 50 other meanings for the black ribbon awareness, including Mourning, Melanoma, anti- gangs, Anti- terrorism in Spain, narcolepsy, POW-MIAs, Primary Billiary Cirrhosis, Amish Support, gun control, accidents……You get the idea. So why can’t I design and make a special one for people that have Narcolepsy Like my wife and you! One that stands out, one that means something on its own, One that has no other meaning, One that can finally make people and others like insurance companies, social security, drug companies, doctors, congress, research companies and labs, as well as disability insurance companies, parents, friends and family, and the general public, see that this is a serious life long affecting disease, so we can all get more help then what they do now. I’m sure you all understand. So please, what I am asking for, is ideas and a to or 3 color combo for ribbons, maybe a little smiley face on one side showing your bright and happy side and maybe a little smiley face on the other showing your sleepy or sad side because the way people treat you and keep this like a rare disease. It’s not fair and I want to do something great for all of you but most of all for someone I love dearly and more then anything in this world, no matter what our current situation is. I seen and lived with this first hand from the cat attacks to the sleep attacks. To not being able to go out, to watching such a beautiful loving and caring person give up many times. This is for everyone to share and get involved and even on your worst days, remember as you get older and still nothing is done, there are kids and many others going through what each and every one of you go through each and everyday. So stand with me, stand together and let’s fight this fight and make people really aware. Let’s do what many others have done for cancer and things like that. Let’s change this and the way society treats you and most of all lets make a difference. PLEASE. My email is firstname.lastname@example.org and I need suggestions and other links to post this in. I know how tired most of you get and I know many times you all need rest and sleep and sometimes you don’t feel like moving but I can move and I will not sleep until something is done. Please respond as for this is very important to me and hopefully to you and I am dedicating this all to the love of my life and my best friend and to all of you. Thank youSeptember 19, 2014 at 3:48 pm #13781
A few things… Does she or anyone in her family have any form of anxiety or panic disorder? The reason she can be falling asleep at random is because her body naturally runs adrenaline at higher levels. When I have anxiety or a panic attack, after I come down from it, I can’t move and I have to fall asleep. There have been times where I would just pass out sitting up. The amount of adrenaline that pumps through the body during an attack is the same amount a normal person would get from being in a plane crash. So imagine how exhausting it can be when you come out alive on the other end. I always recommend maca root, specially to women. Have her try it. It is nothing but a radish but it works wonders on the body. I use the NOW high potency tablets, they are around $10 online most places.
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