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Speaking Out as a Caregiver

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Laurie’s Story In life we take so much for granted. Most of us go through our day without a second thought to simple things such as getting up out of bed, getting dressed and looking forward to the day. In 2005 I had an eye opener. I am speaking to you as a mother of …

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Tips on Helping Mom With TN

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Hunter’s Story My name is Hunter Ashleigh Gust. I’m 11 years old and I’m in the sixth grade this year.  My mom, MaryEllen, has trigeminal neuralgia. Right now, she has both typical and atypical pain. She was diagnosed in 2006; I was only 6 years old then. Over the past 5 years, I’ve learned there …

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Motherhood and TN

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MaryEllen’s Story Here’s the thing about motherhood; in all honesty, being a mom is the hardest job you will ever have. Every mother wants to be able to look back with a sigh of relief and realize she raised a child who is happy, healthy, and makes a positive impact on the world. As a …

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Tips for Parents of K-12 Students

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Does My Child Need an IEP or 504 Plan? In the US, an IEP is an Individualized Education Plan (IEP), mandated by the Individuals with Disabilities Education Act. A child with facial pain will fall under the category “Other Health Impairments (OHI)”. The IEP describes the goals that the IEP team (including parents) have set …

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Caregiver Tips

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We on the YPC reached out to some of the caregivers in our network for their advice on how to best help TN patients and other caregivers. Several common themes emerged from their testimonials, and we agree! The most common tips we’ve heard are: Listen Trigeminal neuralgia is an invisible illness, so you won’t always …

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Traveling with Facial Pain

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Many young patients find themselves traveling often for pleasure or business. Traveling by either car or plane can aggravate some patients’ facial pain. Some patients may also find themselves seeking treatment in an unfamiliar hospital. Being proactive can help you get treatment (if needed) faster, or simply make sure your travel plans go smoothly. 1) …

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Working When You Have TN

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First, you will need to assess if you can continue to work as you did prior to your illness. If not, you can… Ask your employer for some changes to accommodate your TN Take a short-term leave (either through a work leave policy, the Family Medical-Leave Act (FMLA), or both) for treatment, surgery, or until …

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Mental Health and TN

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Mental health is often described as a person’s overall emotional and psychological condition.  Said differently, it’s the ability to maintain psychological well-being while satisfactorily adjusting to society and the ordinary demands of life. Those individuals facing chronic physical illness may find it difficult to maintain good mental health.  They may also find themselves subject to …

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Emergency Room Visits

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1) Have your list of medications written down so you do not have to speak. 2) Get a letter from your pain management doctor or neurologist documenting that you are formally diagnosed with TN. 3) If you are unhappy the way you were treated (or were not treated): contact the hospital’s patient representative and let …

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