Susan S.

The Interview (54-year-old female)

Name, Sex, & Age: Susan	Family stats: Married, mom, grandmother
Website: None	Twitter: None

1. How are you related to the PWN (person with narcolepsy)? Mother.
2. How long have you known your loved one? 32 years
3. Has your loved one been diagnosed with narcolepsy by a doctor or did they self-diagnose? Informal diagnoses by several doctors. I think there are still some tests and a formal diagnosis needed, but there is no insurance
4. Do you know their score on the Epworth Sleepiness Scale? (If you would like to get your score, click HERE). No.
5. When, if ever, did you first realize that something was wrong with your loved one? Explain. He now tells me he knew back in junior High School, but had no idea what it was.
6. Was their diagnosis a relief, a surprise, or a disappointment? For me a bit of relief, and a sense of "why did we not figure this out sooner?"
7. Have they ever had a sleep test? No.
8. Does anyone in your family have a sleep disorder? There is a cousin who was diagnosed with narcolepsy as a teen. There is severe insomnia in a close family member.
9. In what ways has narcolepsy negatively impacted your life? Having a loved one deal with such a complex and poorly understood disease has been difficult.It has caused marriage, and financial/career problems for the PWN (person with narcolepsy). As a parent, seeing the amazing potential of an adult child be so impacted by the limitations and challenges of narcolepsy has made me struggle with anger at the unfairness of it.
10. In what ways - if any - has narcolepsy positively impacted your life?Well, in our family, we like to laugh. So some of our best times are when we are laughing at ourselves, and narcolepsy has added an extra element of entertainment. Recently, our PWN was relating a funny experience, very animated, so of course, he went down like a ton of bricks on my kitchen floor from a cataplexy attack. Between the story itself, and then the reaction of our narcoleptic, it was just a good, warm, family kind of moment. Narcolepsy has also reminded us not to take things for granted, not to be prideful, and to be glad that while N is a tough disease to deal with, it is by no means the worst thing a person can get.
11. What aspects of narcolepsy bother your life the most? Not knowing how much help to offer. Our PWN is a capable, intelligent adult. But, sometimes, he falls asleep when he needs to get something done. Or will say something (automatic behavior), that he either doesn't mean, or will have no recollection of later.Or he will start a project with the best of intentions, and then fall asleep, and then not get back to it.But these are really small things. For the most part, narcolepsy does not bother my life at all. I think it may be different if the PWN were a spouse rather than an adult child living here with us.
12. How does your family and/or friends cope with knowing that your loved one has an incurable illness? Most are a combination of concerned and curious.Especially if they have witnessed a cataplexy attack, which PWN has frequently. Most just want to hang out and see that he is the same great guy they have always known.Many have shared that they have gone online to learn more themselves after learning that he has it.
13. How do you cope with knowing that your loved one has an incurable illness? I'm still learning to accept the unfairness of it. I do compare it with more heinous diseases, and feel grateful he does not have any of those. I love to learn, so I find it fascinating to understand more about the different brain states. I have also reached out online and IRL to others who have loved ones with N.
14. How does narcolepsy affect your relationship with your loved one? I have to be careful not to be too "concerned mom".
15. How does narcolepsy affect your parenting and/or work skills? N/A
16. What medications has your loved taken for narcolepsy? What are they currently taking? Different stimulants, Provigil now.Many different sleep enhancers, trazadone, Ambien, Sonata.
17. What lifestyle changes have you and your loved one made to deal with your loved one’s narcolepsy? PWN has gone from a more than full time job with a lot of authority over others, to a simpler position 3 days a week.This has, of course resulted in a lot less money. So with less money, and more time, PWN has a more balanced schedule of work, exercise, spiritual pursuits, sports, time with children, time with extended family. And of course, lots of time for naps.
18. Do your loved one’s medications or lifestyle changes have any side effects? It is hard to take care of family and financial obligations.
19. If there was one thing you could get someone who doesn’t understand narcolepsy to understand, what would it be? A PWN cannot help when they are sleepy or cataplexic, and is most likely doing the best job they can to take care of their responsibilities. Yelling at them or insulting them, or telling them to "try harder", will not get results.
20. In a perfect world in which your loved one would not have narcolepsy (or any health problems) what would you like to do with them that they can’t do now? Right now my PWN cannot fulfill his obligations and maintain his own home. I would like to see him have that.
21. Is there anything else you want to say about narcolepsy that wasn’t included in this interview? That the symptoms of this disease may be present for many years before the patient or their loved ones know what it is. And opinions about the person, (even of the patient themselves) may be influenced in a negative way. "XXX is lazy". "XXX never finishes what they start". "XXX Makes weird faces" (early cataplexy). "XXX is such a flake". I think a diagnosis of Narcolepsy calls for a re-examination of our opinions of of the PWN, now that we know what we know. I really would like to go further, and suggest that we examine any negative labels we may put on others or ourselves. Because we really do NOT know everything that goes into making people act the way they do. (Steps off soap box).