Friday, October 22, 2010
I have memory issues, my feeling is that it is from my Narcolepsy...But hard to find an answer to this. Doc says yeah possibly but doesnt understand. Lack of memory harms my life nearly as much at the narcolepsy itself. Need help, advise, anything!
It is not only possible that Narcolepsy is causing problems with your memory, it is highly likely.
Memory loss and problems with cognitive function are two of the most common symptoms of sleep deprivation, which is essentially the core of our condition.
We don't have a fancy name for it, but patients with Fibromyalgia often refer to the "Fibro Fog," which seems to be very similar to what we experience: a general confusion, foggy feeling, like your whole brain never quite wakes up.
I think your question is really what can you do about it? Unfortunately, there is no easy answer to that. Some people find it helps to write things down. I personally advocate having the best sleep hygiene possible and sticking to a routine.
No matter what you do, try to talk to people who DO understand. You can join Planet Narcolepsy on Facebook (facebook.com/planetnarcolepsy), or I also recommend DailyStrength.org
Good luck, and please contact me anytime!
Monday, October 11, 2010
Maybe your friends and family don't want to be involved with Narcolepsy. Maybe they have other conditions they worry about.
That's okay too! Planet Narcolepsy is pleased to announce that we have registered a second domain - AwarenessMatters.org Currently the page is under construction, and it will continue to be as long as it takes, but we'd like to roll it out soon, if we can get the manpower behind it.
Our slogan is "Awareness Matters." And it does, but not just for those of us with Narcolepsy. It's amazing how many other conditions, some closely linked to Narcolepsy, do not get the attention they deserve and leave people suffering, un- or mis- diagnosed for years, lonely and misunderstood, and often ridiculed for "invisible" diseases and disabilities.
Expanding on our theme of bringing together patients with supporters, medical professionals, and education, Awareness Matters will feature areas on medical conditions with similar stigmas to Narcolepsy. A few we've already considered are:
Inflammatory Bowel Diseases (Crohn's, Ulcerative Colitis, etc.)
Many of these are autoimmune conditions, and the overall topic of autoimmune clusters is a goal to be addressed as well.
I need people to "man" these sections as moderators, bloggers, researchers, and marketers. I cannot do it alone! If you or someone you know is interested, please email email@example.com for more information, and don't hesitate to share your ideas on content or other conditions to feature.
There are only a couple of "requirements" (I'm flexible) for any topic to be assigned its own section:
*The condition must be considered "rare" (rarediseases.org has an extensive but not all-inclusive list. If the topic is part of NORD's list, it is automatically accepted)
*There must not be any well-known, national groups or campaigns associated with the condition (NarNet is not well-known among non-narcoleptics, but the American Cancer Society is common knowledge to people who don't have cancer)
*There must be some sort of hurdle in obtaining diagnosis (a highly specialized test, a similar and often misdiagnosed condition (like epilepsy for us)
*There must be little or limited knowledge in the medical community at large
*Average time to diagnosis should exceed 2 years
*Funding for research must be minimal or nonexistent
I hope to hear from many of you and look forward to working together.