22: Hydrocephalus Association with Amanda Garzon


Manage episode 290995897 series 2842580
Player FM과 저희 커뮤니티의 Audioboom and ABC's of Disability Planning 콘텐츠는 모두 원 저작자에게 속하며 Player FM이 아닌 작가가 저작권을 갖습니다. 오디오는 해당 서버에서 직접 스트리밍 됩니다. 구독 버튼을 눌러 Player FM에서 업데이트 현황을 확인하세요. 혹은 다른 팟캐스트 앱에서 URL을 불러오세요.
Facebook: @HydroAssoc | Twitter: @HydroAssoc
Website: https://www.hydroassoc.org/
YouTube: https://www.youtube.com/user/hydroassoc/featured
Hydrocephalus Association local Community groups: https://www.hydroassoc.org/cause-view/community-network/
WALK to End Hydrocephalus events: hydroassoc.org/walk

HydroAssist mobile app: https://www.hydroassoc.org/hydroassist-mobile-application/
Hydrocephalus Patient Powered Registry (HAPPIER): https://www.hydroassoc.org/happier/
If you'd like to watch the video interview to see the slides Amanda was using you can find it here.
Amanda Garzon, the Hydrocephalus Association's Director of Program Services and Communication, joins me to talk about what hydrocephalus is and how the Hydrocephalus Association is helping those who are affected. If you are anything like I was, you probably have never heard of hydrocephalus - despite the fact it affects over 1 million people in the US.
Additionally, Amanda helped the Hydrocephalus Association create an app - look for HydroAssist wherever you get your apps. This app will allow you to download and store your treatment history, giving you access wherever you may need it - even if you're on vacation in another country. It's secure and robust, with the ability to upload images from MRI and/or CAT scans.
This is a longer interview than normal because I felt it was important to share what hydrocephalus is. I will do my best to break it into chapters like I normally do, so you can scroll through to the sections you are most interested in - however, given my lack of knowledge coming into this discussion I can't promise my chapters will do Amanda's presentation justice.
The "wet/wacky/wobbly" Amanda mentioned:
1) Difficulty walking, feeling like feet are "stuck to floor"
2) Urinary urgency - eventually leading to incontinence
3) Dementia like symptoms, often misdiagnosed as Alzheimer's or Parkinson's
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