Another member recently posted a discussion about writing a research paper on Narcolepsy. Someone replied asking that the paper be shared when it is finished. I am a second year master's student in human growth and development and I have done a lot of research relating to Narcolepsy. I'm not comfortable sharing my academic papers, but I would be happy to share outlines or summaries of information that I've found useful. Is that something that people would like? I love learning about Narcolepsy and I've found it really eye-opening... but I'm kind of a nerd, so I don't know if others feel that way. Tell me what you guys think!
Hi SweetAnnie. I would love if you would share these things. I have only recently been diagnosed with Narcolepsy and I would like to understand more about this. There is so much out there and when I start to research it I become overwhelmed and don’t know where to start. And then of course, I become tired! If you would be willing to share the useful information you have found through your research, and even summaries of it!, I know I would be grateful! Personally I feel like I need to understand this in order to successfully treat it.
I agree, i read as much as i can so as to undestand it better. And along with this group and the realities that are not always said in documents but we all seem to deal with. It would be an honor to have you share some of your research. I got this wonderful condition as an adult and i think mine was due to traumas and stress. And i have only read that one other place that they have found a correlation to significant events and stress. And also i got strep throat about three years ago and i ended up in the emergency room in 24 hours and after that my symptoms just increased a tenfold.
It's really helpful to provide links to sources. If you make a hypothesis or conclusion based on these, informally cite yourself, too. And on the topic of taking credit for your work, you can link to your paper if you publish. So nerdy - love it.
You might try posting a section as a Discussion topic.
Melissa, I know exactly what you mean! I am excited to be able to help :) I'm going to friend you right now. Please send me a message so we can talk about where I should start. I'm guessing it might be helpful for you to start with a basic overview? Let me know! - Annie
Melissa said:
Hi SweetAnnie. I would love if you would share these things. I have only recently been diagnosed with Narcolepsy and I would like to understand more about this. There is so much out there and when I start to research it I become overwhelmed and don't know where to start. And then of course, I become tired! If you would be willing to share the useful information you have found through your research, and even summaries of it!, I know I would be grateful! Personally I feel like I need to understand this in order to successfully treat it.
Corinna, a lot of my interest in Narcolepsy has been in those realities of the experience, the psychosocial and quality of life impacts of Narcolepsy. I can certainly share some article summaries and links that cover that topic. It sounds like you are also interested in the origins or causes of Narcolepsy. I haven't done substantial research yet in that area, but what I have read is confusing and at times conflicting. I think it's time I did some heavy meta-analytical research in that area to clarify what experts reliably agree on. It may take me a little time because I have a lot going on with school at the moment. Have patience with me and I will come through!
Corinna said:
I agree, i read as much as i can so as to undestand it better. And along with this group and the realities that are not always said in documents but we all seem to deal with. It would be an honor to have you share some of your research. I got this wonderful condition as an adult and i think mine was due to traumas and stress. And i have only read that one other place that they have found a correlation to significant events and stress. And also i got strep throat about three years ago and i ended up in the emergency room in 24 hours and after that my symptoms just increased a tenfold.
Carol, I was thinking I could provide some summaries of articles published in peer-reviewed journals and I will certainly provide a citation for anyone who wants to read the whole article. I have access to an enormous research database through my university right now. Many of the research articles I find can't be accessed without a subscription and I can't share PDFs publicly without the authors' permissions.
As far as my work goes, it relates to my field of study, which technically is clinical mental health counseling, but I have decided not to pursue licensure after graduation. The two academic papers I have written are proposals for more research into counseling methods and more targeted support services for Narcoleptics. Neither of my papers are published and one of them I am considering editing and copywriting, hence my concern in sharing them. There are only two conclusions which I believe are unique to me. 1) We (Narcoleptics) face many, many challenges and the mental health community could do a much better job of understanding and supporting us. 2) There are mountains of sources providing information about Narcolepsy, many of which are articles written in medical or psychotherapy jargon, and it is absurd that a population of chronically excessively tired individuals are required to wade through all of that in order to understand their condition. In the process of coming to those conclusions, I have come across a lot of valuable information that I would like to share... summarizing the pertinent information so as not to add to the exhaustion!
Carol said:
It's really helpful to provide links to sources. If you make a hypothesis or conclusion based on these, informally cite yourself, too. And on the topic of taking credit for your work, you can link to your paper if you publish. So nerdy - love it.
You might try posting a section as a Discussion topic.
Absurd it is, and right you are. :) I'm surprised you're the only person I've heard validate this - most of us would benefit from health professionals knowing that, though we wish to be self-sufficient and retain our self-respect, patients appreciate their teams to have a working knowledge of narcolepsy and sleep disorders and not just proficiency interpreting MSLT's. Maybe it's another example of medical schools neglecting the "people" part. Being understood is so important to patients.
I know you're a very busy student. You're kind and welcome to share whatever you can, SweetAnnie.
I'll clarify that I haven't had a doctor or counselor validate the daily and psychosocial experiences of people with narcolepsy. On this site (BF Living with Narcolepsy) and anywhere PWN can share what life is like day-to-day, validation happens. This is my experience. Anybody else find this?
If you have any questions and would like to contact me suffer from narcolepsy for many years if my memory is correct it was officially diagnosed in 2005 I can give you the insides of things I have done in addition to medication to help me deal with the everyday life of dealing with narcolepsy I have done something things I called thinking outside of the box I have raised my doctor’s eyebrows and he said he likes what I’m doing and he did not take my drivers license away from me my narcolepsy is one of the severe cases I do take Ritalin the highest recommended daily dosage is only 3 ritalin per day at 20 milligrams each I take about five to six that is prescribed to me this is very alarming to my doctor as well as myself. But with 4 major sleep studies and two doctors that study narcolepsy one being a specialist in the field says this is what is going to have to be. So I have came up with other alternatives then just medicine that stimulate me that has actually help me lower my dosage down to 4 to 5 pills per day and on special days good days as I call them 3 pills per day all because of other things that I have done outside of the box I’m more than willing to share the things with you as I shared some of them with another person that was on here saying my “mom is scared to let me drive” I share the things I do just to be safe at driving. Sorry for the lack of punctuation I use speech recognition to get me through the typing. And for the reading because I fall asleep during reading I highlighted and I have a reader for me that reads it out loud for me on a loudspeaker so everything that goes on in my life is pretty much sounds and vibrations to keep me stimulated so look me up on Facebook and used messenger and send me a message I’ll be more than willing to communicate with you KathyJo S. Manes I don’t only deal with narcolepsy I also have to deal with rheumatory arthritis osteoarthritis fibromyalgia and I have been classified as morbidly obese I was 365 pounds wheelchair bound had lost down to 114 pounds then back up 280 and now doing the Fitbit thing because praise God not in the wheelchair anymore and I’m down to 214 and still losing the drastic weight loss was due to the lap band surgery and being put on Ritalin at such a high dosage then through the years my body said we know how to handle this and I started gaining the weight back.
Kathy, what program do you use as speech to text and to read for you? I have been looking for a program to do this for me as well. Thanks in advance.
KathyJo said:
If you have any questions and would like to contact me suffer from narcolepsy for many years if my memory is correct it was officially diagnosed in 2005 I can give you the insides of things I have done in addition to medication to help me deal with the everyday life of dealing with narcolepsy I have done something things I called thinking outside of the box I have raised my doctor's eyebrows and he said he likes what I'm doing and he did not take my drivers license away from me my narcolepsy is one of the severe cases I do take Ritalin the highest recommended daily dosage is only 3 ritalin per day at 20 milligrams each I take about five to six that is prescribed to me this is very alarming to my doctor as well as myself. But with 4 major sleep studies and two doctors that study narcolepsy one being a specialist in the field says this is what is going to have to be. So I have came up with other alternatives then just medicine that stimulate me that has actually help me lower my dosage down to 4 to 5 pills per day and on special days good days as I call them 3 pills per day all because of other things that I have done outside of the box I'm more than willing to share the things with you as I shared some of them with another person that was on here saying my "mom is scared to let me drive" I share the things I do just to be safe at driving. Sorry for the lack of punctuation I use speech recognition to get me through the typing. And for the reading because I fall asleep during reading I highlighted and I have a reader for me that reads it out loud for me on a loudspeaker so everything that goes on in my life is pretty much sounds and vibrations to keep me stimulated so look me up on Facebook and used messenger and send me a message I'll be more than willing to communicate with you KathyJo S. Manes I don't only deal with narcolepsy I also have to deal with rheumatory arthritis osteoarthritis fibromyalgia and I have been classified as morbidly obese I was 365 pounds wheelchair bound had lost down to 114 pounds then back up 280 and now doing the Fitbit thing because praise God not in the wheelchair anymore and I'm down to 214 and still losing the drastic weight loss was due to the lap band surgery and being put on Ritalin at such a high dosage then through the years my body said we know how to handle this and I started gaining the weight back.
Sweet Annie, I would be very interested in seeing your outlines, summaries and references. I love to learn as much as I can about N.