Travelling a Parallel Path

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Adult living with hydrocephalusMy name is Amy Booher, and my husband Clifton and I attended the 2014 National Conference on Hydrocephalus in Portland, Oregon. I was diagnosed with hydrocephalus at age 17, but this was our first time attending the conference. We were really excited to learn more about the available technologies and treatments, and connect with other families and patients with hydro. We had a fantastic experience, made new friends from all over the country, and were able to make face-to-face relationships with the staff of the Hydrocephalus Association. At the conference, we found a company that has an anti-siphon device that we had never seen before. After taking that information back to my neurosurgeon, I had one placed in my next surgery – something that has improved the quality of my life.

In the past year, I have launched a website/blog about my journey living with hydrocephalus, and I am excited to share what I learn at this year’s conference with the people from all over the world who follow our story online. Above all, I feel that the most important aspect of this event is the opportunity to connect people who are all traveling a parallel path. Clifton and I especially enjoyed watching all of the kids that attended. Seeing them laughing and freely expressing themselves was so amazing.

Daily life with hydrocephalus is challenging to navigate, and knowing that you are not alone is comforting. You can find more about our story on my website, www.amybooher.com or on Instagram @amy_booher. Here’s to another great conference, and here’s to the relentless pursuit of everything important.

Clifton & Amy Booher

To learn more about conference, visit our website! www.hydrocephalusconference.org

Hydrocephalus Moms and Patients

5 Comments for : Travelling a Parallel Path
  1. Reply

    What kind of advice would you give to a mom and dad who has a son with hydrocephalus since birth has had 7 shunt revisions and is just 7 yr old and on top of that he also has autism, cerebral palsy and is a liver cancer survivor.

    • Jen
    • February 28, 2016
    Reply

    It is a blessing to hear others stories! This is all still new in my life and we are trying to adjust, good to see how others make it!

  2. Reply

    Amy you have been such an inspiration to my daughter Lauren. She follows you and I believe you have helped her to feel like she can overcome anything.

    • Laurie Mueller
    • February 18, 2016
    Reply

    Hi Amy: I am 56 years old and was diagnosed and first shunted in 1976 at age 16. I have had 3 revisions, the most recent 6/2013 with a more recent complication resulting in an ER visit and inpatient stay just 3 weeks ago. Valve setting issue and my neurosurgeon just yesterday told me that I was his most sensitive patient to valve settings. We did an adjustment in the office and the next day I was back with an admit through ER and i/p stay. Another adjustment and I was better ialmost mmediately. I look forward to communicating with you. Thank you, Laurie Mueller, Spokane, WA

    • Blaise
    • February 18, 2016
    Reply

    Very inspiring. I was diagnosed with hydrocephalus in 1993. Im an artist, writer, and would love to know how to get involved with this organization. Thanks for reading and hope to get in touch.
    Regards,

    Blaise

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