All posts by unstrangemind

About unstrangemind

I am an adult Autistic. I've come so far; I have so far to go. I've named my blog after Grinker's excellent book, "Unstrange Minds: Remapping the World of Autism." Other than borrowing from his title (do you know how difficult it is to find a wordpress name that hasn't already been taken?!) I have no connection with Dr. Grinker.

Michael Worley – N24 to me is a huge pain in my ass

The hardest thing for me about N24 isn’t even the inability to hold a job, that alone is bad, but the social aspects are far worse. I stopped getting invited to friend’s parties because they thought I simply wasn’t going to show, I was always welcome to come even without an invite but my sleep patterns made things so difficult for all of us that nobody wanted to do actual math to figure out if I was going to be there.

Click here to read the whole entry

Circadian Sleep Disorders Network – Nov 24 is N24 Day

Non-24-Hour Sleep-Wake Disorder is a serious disorder of the body’s circadian system, in which a person’s clock runs (generally) much longer than 24 hours and they are unable to entrain to a 24-hour daily cycle. Instead, their sleep time progresses later and later each day, going all the way around the clock. It is also called Free Running Disorder. Without proper treatment the person is unable to meet regular daily commitments and so, without suitable accommodations, unable to hold a normal job, so this is a real disability. And in some people the current treatment are ineffective.

Click here to read the whole entry

Also, click here to read CSD-N’s facebook entry

James Fadden – N24 Awareness Day 2014: Myths and Reality

Well, it’s that time of year again. The nip of Autumn is in the air, and that can mean only one thing, N24 Awareness Day. Just one year ago, the N24 community celebrated the first N24 Day, having designated November 24th as our day to spread awareness of the condition.

2014 has certainly been an eventful year for awareness of N24. In January of this year the US Food and Drug Administration approved the first drug specifically designated for the treatment of N24 in totally blind patients. In the US, advertising of medicines is permitted and Vanda has been running advertisements on television and radio talking about N24. A year ago the average person had never heard of N24. Now, if you were to ask someone (at least in the US) if they had heard of N24 there is a good chance the answer would be yes, because of the Vanda campaign.

Click here to read the whole entry

N24 Day 2014

Every year, November 24th is celebrated as N24 Day!

On N24 Day, people with N24 and our allies are encouraged to write about living with N24 or create other forms of art and communication (videos, paintings, music, audio recordings, etc.) about the lived experience of N24. These can take the form of personal stories, scientific essays, awareness essays, poetry, paintings, music and other symbolic expressions and more.

To share your work with others through this site, contact us at N24awareness@gmail.com

We would be happy to link to your work, mirror your work, or host your work – let us know which you prefer.

This awareness hub is not owned or operated by any organization or entity and does not represent or endorse any group or power. It is a resource by and for all individual people with N24 and our allies. Together, our voice can be powerful.

Susan Plawsky

Susan Plawsky wrote an excellent post for N24 Awareness Day. This is a mirror of what she wrote on her private Facebook page:

Spreading awareness of N24 (non-24-hour sleep-wake disorder) in solidarity with friends who have this devastating, disabling neurological disorder.

In essence, their body runs on a longer-than-24-hour clock.

It’s like living on non-Earth time. Or like waking up in a new time zone every day.

Hard to imagine; harder to live with.

For ex, today the sufferer might wake up at 8 AM, tomorrow at 9:30 AM, next week at 8 *PM*.

Formal education, employment, relationships, parenting? Challenging, if not impossible.

Making matters worse, the sufferer’s body systems (sleep/wake, digestion, alertness) may be out of sync with each other, so he/she feels chronically awful and exhausted.

Delayed2Sleep

This is a mirror of what Delayed2Sleep wrote on their private Facebook page today:

This is my “status” on Facebook today:

Today, November 24, is N24 AWARENESS DAY 2013. N24, short for Non-24-Hour Sleep-Wake Disorder, is, among sighted people, the most debilitating of the circadian rhythm disorders. (Among the blind it has a different cause and is most often treatable.) I have “only” its little brother, DSPS/DSPD, which gives me just an inkling of how N24 is. What we have in common is fatigue and the fact that our sleep patterns are abnormal and inflexible.

People with N24 cannot keep to the 24-hour day on this planet. While normal people usually are awake for about 16 hours and sleep for about 8 hours, N24 people are awake for about 17 hours and sleep for about 9 hours (plus/minus) for a “day” much longer than 24 hours. That means that if they woke up at 8 a.m. today, they’ll awaken at 10 tomorrow, noon the day after, 2 p.m. the day after that and so on around the clock. This makes them have great difficulty getting an education; it generally makes them unemployable; and it makes it nearly impossible for them to make and keep any appointment.

Today is AWARENESS day. Please don’t judge people who have invisible disabilities; they have enough to struggle with as it is. Thanks!

James Fadden

James Fadden, aka, LivingwithN24, has written a post discussing the latest advances in N24-related scientific research to celebrate N24 Awareness Day.

excerpt:

“These results suggest that a longer-than-average intrinsic period is a component of N24, but it is not the only causative factor. Other factors, such differences in phase angle between sleep and temperature rhythms, as found in several studies, may play a role.”

Read the entire entry:

N24 Awareness Day