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trishbogucki

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1 reviews

Review for Hydrocephalus Association, Bethesda, MD, USA

Rating: 5 stars  

After I was diagnosed with NPH and had my shunt implanted, I wanted to know more about hydrocephalus so I asked my doctor for a good source of information. He pointed me to the Hydrocephalus Association website, and that has changed my life for the better almost as much as my shunt has!
I started out writing posts about my NPH experiences for the HA blog and then was encouraged to become a peer support volunteer for HA and talk with other NPH patients and their family members. I love doing that since I have a happy story to tell: after being unable to walk unassisted I have regained virtually all of my functionality. (My stretch goal for my year of PT was to get back to the Advanced Step class at my gym. As you can see in the photo I was able to do that!) The HA peer support program includes training, and we counselors are in turn supported by a wonderful manager of support programs at HA.
I also help manage the NPH Community Network on Facebook which has grown to more than 500 members in the last year. It is a wonderful place to share stories and concerns and to crowdsource possible solutions to the many challenges NPH gives us. Many members of the NPH CN have expressed gratitude for the information and support that is shared there.
My life is much richer and more purposeful thanks to the small but mighty Hydrocephalus Association, and I am very grateful to them for their caring staff, their wonderful conferences and education events, their community networks and their research programs.

Role:  Volunteer