1.) What specific symptoms of narcolepsy do you experience? For example, do you have to take two naps during the day, do you get cataplexy, do you begin to do things and then forget that you are doing them? Be as specific as you can. Tell me the exact length of your naps (if you need them), and tell me the exact details of a muscle weakness attack (if you get them).
2.) What treatments for narcolepsy have you already tried? Do you use stimulants during the day? Do you take short planned naps? Or do you use an alternative treatment such as herbs or acupuncture? Once again, specificity is key. I want to know everything you have tried that has or has not worked. Also, if you see a sleep doctor, I'll need who he or she is by name and what sort of treatment plan was offered and whether or not that worked. If you can provide contact information for your sleep doctor, it will be extremely helpful. I need to know this in order to suggest it to other people who have been diagnosed with narcolepsy or who are wondering if they have narcolepsy.
3.) How has narcolepsy affected your personal life? How did people perceive you before you knew you had narcolepsy? What sorts of general personality types were attributed to you that you found offensive (examples: “she’s lazy”, or “he must have had a wild night last night,” or “she’s depressed”)? What sorts of challenges, if any, did you face in supposedly “normal” social situations in which you were expected to stay awake? Once again, any specific story relating to this would be fantastic.
4.) What kind of an affect has narcolepsy had on your work life? How did employers respond to your daytime tiredness? What was it like not knowing you have narcolepsy and trying to convince your employer that you are a valuable employee? Are there any specific work related incidents that you would be willing to share?
5.) How has being diagnosed with narcolepsy helped or harmed your life? Do you feel a sense of relief or terror in knowing with more certainty that you have narcolepsy? How have others responded to your diagnosis? Are they supportive, or do they retain their doubts and still think it must be something else (for example, depression, etc.)? How has your diagnosis affected your work life? Is your employer supportive and flexible with you? If they are, provide the specific details of what they allow you to do. If they aren’t, tell me why you think they aren’t.
6.) What can you tell me about the reasons why you didn’t think you had narcolepsy for so many years? What were other healthcare professionals telling you that had you convinced it might be something else (depression, laziness, etc.)? What was the straw that broke the camel’s back in convincing you that you have narcolepsy? For most people, diagnosis takes a very long time. Why do think it took so long for your diagnosis to happen? Once again, if you were diagnosed in a short period of time, just say it didn’t take a long time at all.
7.) How have your narcolepsy symptoms progressed? If they haven’t, just say they haven’t, but if they have, please provide a full timeline of the progression.
8.) How important is it for you to be connected to other people who have narcolepsy? If they provide support for you, what kind is it? Is there a certain kind of support that they might not be able to provide or that you feel a family member or other loved one might do a better job at providing?
9.) If there is one thing you can tell someone who was just diagnosed with narcolepsy about dealing with narcolepsy, what would it be?
2.) What treatments for narcolepsy have you already tried? Do you use stimulants during the day? Do you take short planned naps? Or do you use an alternative treatment such as herbs or acupuncture? Once again, specificity is key. I want to know everything you have tried that has or has not worked. Also, if you see a sleep doctor, I'll need who he or she is by name and what sort of treatment plan was offered and whether or not that worked. If you can provide contact information for your sleep doctor, it will be extremely helpful. I need to know this in order to suggest it to other people who have been diagnosed with narcolepsy or who are wondering if they have narcolepsy.
3.) How has narcolepsy affected your personal life? How did people perceive you before you knew you had narcolepsy? What sorts of general personality types were attributed to you that you found offensive (examples: “she’s lazy”, or “he must have had a wild night last night,” or “she’s depressed”)? What sorts of challenges, if any, did you face in supposedly “normal” social situations in which you were expected to stay awake? Once again, any specific story relating to this would be fantastic.
4.) What kind of an affect has narcolepsy had on your work life? How did employers respond to your daytime tiredness? What was it like not knowing you have narcolepsy and trying to convince your employer that you are a valuable employee? Are there any specific work related incidents that you would be willing to share?
5.) How has being diagnosed with narcolepsy helped or harmed your life? Do you feel a sense of relief or terror in knowing with more certainty that you have narcolepsy? How have others responded to your diagnosis? Are they supportive, or do they retain their doubts and still think it must be something else (for example, depression, etc.)? How has your diagnosis affected your work life? Is your employer supportive and flexible with you? If they are, provide the specific details of what they allow you to do. If they aren’t, tell me why you think they aren’t.
6.) What can you tell me about the reasons why you didn’t think you had narcolepsy for so many years? What were other healthcare professionals telling you that had you convinced it might be something else (depression, laziness, etc.)? What was the straw that broke the camel’s back in convincing you that you have narcolepsy? For most people, diagnosis takes a very long time. Why do think it took so long for your diagnosis to happen? Once again, if you were diagnosed in a short period of time, just say it didn’t take a long time at all.
7.) How have your narcolepsy symptoms progressed? If they haven’t, just say they haven’t, but if they have, please provide a full timeline of the progression.
8.) How important is it for you to be connected to other people who have narcolepsy? If they provide support for you, what kind is it? Is there a certain kind of support that they might not be able to provide or that you feel a family member or other loved one might do a better job at providing?
9.) If there is one thing you can tell someone who was just diagnosed with narcolepsy about dealing with narcolepsy, what would it be?
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