12 replies to this topic

[Kimberly]

Everyone has their talents. I wish I could do graphic design so I could capture my feelings about N in an image and print up a billion stickers to share with my fellow patients and paper the world.

Anyway, I am comfortable with public speaking as it has been a component of my job for the last 15 years or so. I think the only way I can stay awake on the job is when I'm standing in front of a group!

How can I turn this into advocacy in my community?

[Kimberly]

BUMP -- any ideas??

[greatbig47]

Perhaps start a blog?

We offer free blogs for narcoleptics...It could be a good way to fine tune any message you may have.
Let me know if you are interested.

Read, read, read!!!!! Be as educated as possible.

Go to conferences to see what it's like. The one in October has an incredible line-up!

[Lais02]

Hmm... maybe you can speak to doctors to inform them on N. Since it took most of us so long for a diagnoses, letting doctors know it's out there and to not pass it off as a possibility right away could help. I'm sure most of us have stories from the pre N diagnoses years that are ridiculous to have NOT caused our doctors to consider N.

[Kimberly]

That's actually a great idea.

I got a call from a Pediatric Neurologist in the area who treats both children and adults with sleep disorders.. he was very interested in co-presenting some CME (Continuing Medical Education), where we could present information to the medical community. He thought that we could get one of the drug companies that makes Xyrem or Provigil to sponsor the advertising and any costs associated with the session.

We're in a part of South Texas called the "Medical Center" -- it's one of the largest conglomerations of hospitals and doctors in the country -- so we have the potential to reach a lot of medical professionals, and students due to a local medical school as well.

I need to call him back. Thanks!

Hmm... maybe you can speak to doctors to inform them on N. Since it took most of us so long for a diagnoses, letting doctors know it's out there and to not pass it off as a possibility right away could help. I'm sure most of us have stories from the pre N diagnoses years that are ridiculous to have NOT caused our doctors to consider N.

[Henry G]

I wish I could make this viral short-film about N.

I am trying to learn things like computer animations and music - all because of my desire to make this video clip.

It is a dream, it may never happen but I need a dream to follow and this is one.

Now Kimberly if you a good with speech, why not start a Video Blog

I found this community only because of video I saw on YouTube.

[Kimberly]

Henry,

The film idea is so cool! Have you learned enough about animation or music to make any short "test" films? I would love to see your work.

Can you post a link to the video that you saw on YouTube? I have never heard of a "video blog" but I would imagine that I'd have to be wearing something besides pajamas to record one!!!

Thanks,
Kimberly

--

I wish I could make this viral short-film about N.

I am trying to learn things like computer animations and music - all because of my desire to make this video clip.

It is a dream, it may never happen but I need a dream to follow and this is one.

Now Kimberly if you a good with speech, why not start a Video Blog

I found this community only because of video I saw on YouTube.

[Kidlet]

You actually can go design buttons or bumper stickers to pass out; and fairly easily at that! One of my favorite sites is cafepress.com

Vistaprint has excellent prices on postcards, pens, and magnets.

Good luck!

[Henry G]

Henry,

The film idea is so cool! Have you learned enough about animation or music to make any short "test" films? I would love to see your work.

Not yet

I need to buy a proper video-camera, but haven't got the money yet.

But my skills are still very limited and beginners level to do something decent.

I've been studying Blender and hope to make most of my video editing and effects through it.

[Mike M]

A quick plug on the blog front. I have one that I write about living with narcolepsy. I am stunned by the fact that people do read it, and they are not just people that I know. My blog has been read in 23 countries and 38 states. That is insane! The bet part is that it has been incredibly therapeutic for me. I feel like I am helping people to understand narcolepsy AND improving my own quality of life. I also know that if I could find other narcoleptics' blogs I would read them regularly. I would love to know how others face the insanity of daily life with this crazy condition. Plus, having a blog gives me the chance to plug great organizations like Narcolepsy Network and MOONS - the support groups in Minnesota and Wisconsin.

[chimbakka]

This is something that I have also been thinking about after being diagnosed recently... The biggest concern of mine is the average time to diagnosis (one site i found said 14 years!). At some point, once I'm on a regular med schedule and actually have energy to do things, I want to look into putting together some presentations to address this. Right now my main concern is the time to diagnosis because of the impact this can have on someone's whole life (symptoms starting in early teens most of the time and not being diagnosed to mid-late 20s "typically" - well this affects such an important growth stage in someones life and can set them up for quite a mess). To do this I have to decide what factors contribute to this late diagnosis. I would have to talk to some doctors about it etc, but right now I'm thinking that lack of knowledge/education about health and advocation and narcolepsy in general in the younger population (target:middle school and high school children) as well as lack of training/knowledge of health professionals. N is as prevalent as MS and Parkinson's (both of which I was taught in nursing school to some extent) but wasn't mentioned during my studies (as far as i remember, if it was it was not significant, even after my education I would have never guessed I had N before I did my own learning/research). I would be willing to bet that it is not thoroughly covered in many other medical programs. I think that now enough is known about it that doctors should be educated to regonize some of the symptoms or at least know what questions to ask a patient to determine if further testing is necessary. I also think that the doctors who prescribe the tests should know more about them (ie preping the patient etc). It also bothers me that I went to a sleep lab when I was a teenager with symptoms and they basically "ok well you don't have sleep apnea, there's nothing wrong you odn't have a sleep disorder" and sent me on my way.
Sorry I think I got kind of sidetracked here... my point is it would be neat to create a presentation aimed at teens and one aimed for either inservices for health professionals or for presentations right at colleges/universities.
If anyone is interested in that or has any ideas I'd love to talk to them. my address is chimbakka@hotmail.com.

[Lais02]

This is something that I have also been thinking about after being diagnosed recently... The biggest concern of mine is the average time to diagnosis (one site i found said 14 years!). At some point, once I'm on a regular med schedule and actually have energy to do things, I want to look into putting together some presentations to address this. Right now my main concern is the time to diagnosis because of the impact this can have on someone's whole life (symptoms starting in early teens most of the time and not being diagnosed to mid-late 20s "typically" - well this affects such an important growth stage in someones life and can set them up for quite a mess). To do this I have to decide what factors contribute to this late diagnosis. I would have to talk to some doctors about it etc, but right now I'm thinking that lack of knowledge/education about health and advocation and narcolepsy in general in the younger population (target:middle school and high school children) as well as lack of training/knowledge of health professionals. N is as prevalent as MS and Parkinson's (both of which I was taught in nursing school to some extent) but wasn't mentioned during my studies (as far as i remember, if it was it was not significant, even after my education I would have never guessed I had N before I did my own learning/research). I would be willing to bet that it is not thoroughly covered in many other medical programs. I think that now enough is known about it that doctors should be educated to regonize some of the symptoms or at least know what questions to ask a patient to determine if further testing is necessary. I also think that the doctors who prescribe the tests should know more about them (ie preping the patient etc). It also bothers me that I went to a sleep lab when I was a teenager with symptoms and they basically "ok well you don't have sleep apnea, there's nothing wrong you odn't have a sleep disorder" and sent me on my way.
Sorry I think I got kind of sidetracked here... my point is it would be neat to create a presentation aimed at teens and one aimed for either inservices for health professionals or for presentations right at colleges/universities.
If anyone is interested in that or has any ideas I'd love to talk to them. my address is chimbakka@hotmail.com.

I totally agree! The time to diagnoses is so important. It took me 15 years. I started Xyrem after the conference, and by week 3 of the xyrem I didn't have words to describe it. It was like I've been asleep since about 2nd grade, and now for the first time last week I woke up. I have to experience life for the first time as a normal person... its so cool! I told my psychologist last week "What the hell is everyone always complaining about? Life is so easy and fun when you get to be awake for it!" I'm so excited to live my life again, or maybe for the first time.

This also made me sad though, because look at all the things I missed out on. There are too many things I didn't do because of N, and if we could just help people get a diagnoses sooner they wouldn't need to miss out like some of us did. My psychologist specializes in ADD... which is why I started seeing him a few years ago pre N diagnoses. He told me if he hears some of the same things I've said he'll at least suggest a sleep study, so I think I've convinced 1 person that N needs to be thought of as a possibility at least! Too bad he isn't a doctor, but its a start!

[Mee]

Kimberly,

Personally, I hate speaking in front of audiences. I start getting super nervous, then I start rambling, and then I get "tickky". Grr... I would love to have your skill! How are your MC skills? What do you think about volunteering for NN? And have you considered doing something like a public service announcement on YouTube? Just throwing out some ideas.

-Mee

Everyone has their talents. I wish I could do graphic design so I could capture my feelings about N in an image and print up a billion stickers to share with my fellow patients and paper the world.

Anyway, I am comfortable with public speaking as it has been a component of my job for the last 15 years or so. I think the only way I can stay awake on the job is when I'm standing in front of a group!

How can I turn this into advocacy in my community?