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Narcolepsy Expert Roundup Post

By December 19, 2018 2 Comments

I wanted to know the best answers to two simple questions from the best Narcolepsy Experts out there; What is the most common challenge PWN (people with Narcolepsy) face on a daily basis? and What’s the single most impactful thing a PWN can do to improve their quality of life?

So I reached out to the top minds in the field of Narcolepsy and compiled their answers to those questions. Below are the responses of the Narcolepsy Experts.

Narcolepsy Expert Roundup Post

Julie Flygare from Project Sleep

What is the most common challenge you hear PWN (people with Narcolepsy) face on a daily basis?

While everyone faces different challenges depending on a wide variety of circumstances, I’ve always been struck by how managing the social aspects of living with narcolepsy can be deeply challenging and how under-recognized and unaddressed this part of the experience is by the research literature and medical communities. Despite the very serious nature of the condition, and the many current challenges of managing symptoms, treatments, and side effects, I’ve found that “feeling misunderstood” or “alone” is often the thing that’s most deeply troubling and challenging for many people – those with the condition and often loved ones and family members as well. People with narcolepsy face a lot of stigma on many levels, so acknowledging and addressing the stigma and approaching clinical care from a multidisciplinary team approach to includes addressing the social aspects of the experience will make such a huge difference, I believe.

What’s the single most impactful thing a PWN can do to improve their quality of life?

Connecting with other people living with narcolepsy. There are a wide variety of ways to get connected to others living with narcolepsy through various organizations and online and in-person support groups around the world. I believe this is often a bridge to a whole new world where one can foster empathy and understanding with people who truly “get it” while also picking up on a wealth of tips and strategies from other people with lived expertise.

 

Gina Dennis from Madcap Narcolepsy

Gina Dennis - Madcap Narcolepsy
What is the most common challenge you hear PWN (people with Narcolepsy) face on a daily basis?

Hands down I would say excessive daytime sleepiness but brain fog runs a very strong second.  People with narcolepsy deal with these symptoms because of a lack of hypocretin (orexin).  What most people don’t realize is that there are some common, everyday things, that impact the expression of hypocretin *in everyone*. Things like stress, inflammation, and glucose (carbohydrates).  Those of us with narcolepsy are impacted by these even more acutely because we have so little hypocretin to begin with.

What’s the single most impactful thing a PWN can do to improve their quality of life?

Managing our stress levels, curbing inflammation from other illnesses, and reducing carbohydrates will reduce the impact they have on our hypocretin.  But if I were to choose the MOST impactful of those three I would focus on carbohydrate intake.  By reducing carbohydrate intake during the day, we can keep what little hypocretin we have functioning as best it can.  Save those carbs for the end of the day or initiate a diet that manages them in general.  Either way will have a positive impact on the quality of life for us.

 

Tove Maren from Mama in the Now

What is the most common challenge you hear PWN (people with Narcolepsy) face on a daily basis?

The biggest struggle for a PWN is to manage their excessive daytime sleepiness as well as getting support from their workplace and loved ones. There’s a great analogy for people with chronic conditions, that they have a set number of spoons each day. (Spoons being a metaphor for “energy”) Every task you complete costs a spoon or two. Once you run out of spoons for the day that’s IT… you are out of energy. I think the hardest part for PWN is to manage their “spoons” and accept when they have run out – or at least feel accepted by their loved ones that they have limited energy.

What’s the single most impactful thing a PWN can do to improve their quality of life?

Find their “trigger” and make lifestyle modifications accordingly. Personally, my trigger is “stress”. My N & C get increasingly worse when I feel stressed, either by work or personal stress. Over the year, I have changed my career and I have learned to say “no” more than I say “yes” – all in an attempt to reduce my stress levels. It takes dedication, but it feels great when it effective.

 

Claire Crisp from clairecrisp.com

What is the most common challenge you hear PWN (people with Narcolepsy) face on a daily basis?

Exhaustion.

What’s the single most impactful thing a PWN can do to improve their quality of life?

Diet and sleep hygiene.

 

 

 

What is the most common challenge you hear PWN (people with Narcolepsy) face on a daily basis?

Being exhausted all the time (no matter what you do or don’t do) is something that’s a difficulty people with narcolepsy have to deal with every day. A real challenge that comes with it, is living a normal life and participate in the ‘real world’ despite the tiredness. Even though family and friends are willing to understand, it’s hard to make people understand how it’s like to live with a disease like this.

What’s the single most impactful thing a PWN can do to improve their quality of life?

I guess acceptance is one the most important things you have to deal with before you take other steps to improve your quality of life. After that, there are several things you can do to improve their quality of life: structure, medication, understanding, special agreements with school or job, etcetera. For me, a structure is the most important one: daily naps on specific times, sticking to a strict bedtime routine, but also sticking to a sports routine. Because even when you’re tired, it is important to have enough exercise so that the body stays fit.

 

Rubin Naiman from drnaiman.com

 

Dr. Rubin Naiman

What is the most common challenge you hear PWN (people with Narcolepsy) face on a daily basis?

Self-compassion.

What’s the single most impactful thing a PWN can do to improve their quality of life?

Cultivate self-compassion for all of their symptoms.

 

Michael Heil from @SleepyistMike

What is the most common challenge you hear PWN (people with Narcolepsy) face on a daily basis?

Lack of understanding.

What’s the single most impactful thing a PWN can do to improve their quality of life?

Acceptance of their disease.

Interested in being added to this list or want to hear from someone else? Please email me at narcolepsycoach@gmail.com.

2 Comments

  • Beth Ferguson says:

    I found feel that my memory is not as strong as it once was. People do not understand what narcolepsy does.

  • Great answers from some of the more brilliant minds in our sleepy community! EDS and understanding from others, particularly employers are two ongoing struggles. The World’s Strongest Person having narcolepsy with cataplexy approved this message

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