Top Ten Takeaways from the 2018 HA Conference

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By Trish Bogucki
Guest Blogger

I attended the 15th National Conference on Hydrocephalus held at the end of June 2018 in Orange County, CA.  I hoped it would be an educational experience and it was, but it was also much more.  Here are my top ten takeaways:

10. The venue – I finally get why people love Southern California. The weather was gorgeous and the hotel very attractive and comfortable. I’m glad I made up my mind early enough so I could stay at the Renaissance.

9. Recognition – The folks at HA recognized the efforts of us volunteers in several excellent ways. They offered us a free conference ticket which was extremely generous.  There was also a moment during the awards lunch when all the volunteers were asked to stand and we got a round of applause for our efforts.  That warmed my heart.

8. Recorded sessions – The program was very rich so sometimes it was tough to decide between two sessions being held at the same time. The recording of some of them made it easier to choose, and I am enjoying viewing the sessions that I missed. (Note: you can watch the 19 recorded sessions HERE).

7. The panels – My favorite panel was the ending session led by Dr. Michael Williams on intergenerational experiences with hydrocephalus: the contrast in views was fascinating. I couldn’t help but get teary when our NPH representative Stan White expressed the joy he felt when he finally got a shunt after 20 years of declining health and misdiagnosis.  His life has been on the upswing since then, and his positive attitude was infectious. (Note: you can read Stan’s story HERE).

6. The focus on NPH – There were relatively few NPH patients and caregivers at the conference. Nevertheless, HA had some NPH-specific content to offer us along with doctors and other professionals who treat NPH patients as speakers.  I found that very rewarding.  Getting NPH patients to travel seems like a big challenge – I hadn’t flown since I started having gait issues at least five years ago.  I know the community network leaders have difficulty getting NPH people to travel even small distances to our network meetings so the fact that there were some of us there to share NPH experiences was very rewarding.  I hope others signed up to watch the recorded sessions and that more of the NPH community will attend in the future.

5. The vendors – There were several shunt vendors with tables in the exhibit hall. One member of our group said he could have spent a whole day talking with the vendors there.  When I asked a question of the manufacturer of my shunt I was pleasantly surprised to get a specific recommendation that I can discuss with my neurosurgeon.

4. The HA team – The president and CEO of HA Diana Gray could not have been warmer or more welcoming. The HA personnel who moderated sessions and those who worked behind the scenes were just as warm and welcoming as their president.  What a dedicated, hardworking and caring team!

3. The support – HA led the charge, but everyone at the conference seemed very supportive of our community.  It felt great to be with 600 other people whose lives have been forever changed by hydrocephalus and to feel the fellowship. As one of my fellow NPH patients Jane Phillips put it: “I thoroughly enjoyed the conference and being among people who truly understand what it’s like to have NPH. It was the first time I felt at ease among a large crowd and didn’t get the urge to flee. Everyone was very nice and understanding.”

2. The scientists and researchers – I enjoyed hearing the many scientists and researchers, like Carolyn Harris who is looking for what causes shunt obstructions and gave very honest answers to our questions, and Yale’s Kris Kahle who is looking for genetic clues to who gets hydrocephalus and who has recently expanded his research to include NPH patients.  I had been told that there was no link between the hydrocephalus my older brother died of at birth 70 years ago and my NPH, but I could not believe that it was just coincidence that the first two kids my parents had both wound up with hydrocephalus.  I told Dr. Kahle about it, and he sent me to the Yale table to get signed up for his study and collect some DNA. I am eager to see what his studies reveal. (Sign Up for his upcoming webinar HERE).

1. The doctors – The Medical Advisory Board of HA was well represented. I learned so much from neurosurgeons like Chris Farrell and neurologists like Michael Williams, who are clearly committed to making living with hydrocephalus easier for us.  They were so gentle in their handling of our questions while being very honest about what they don’t know yet and what concerns them.  I brought a long list of questions from my peer support contacts and from myself, and they all got answered.

7 Comments for : Top Ten Takeaways from the 2018 HA Conference
  1. Reply

    I couldn’t agree more with Trish’s comments athough much of my time was spent in a “what was I thinking” mode regarding my decision to leave CA for the East coast. The climate really can’t be beat. Regarding NPH and travel, I had the opposite experience. Before NPH, I never went anywhere as I was worried about reaction to my NF-1, which causes tumors to appear on my face and body. People can be rather rude. But, my ETV resulted in the light bulb going off – i nearly died and never let myself live. My passport has gotten a workout. And, I encourage other NPH-ers to not limit themselves. I love that sessions were recorded so we can see one’s that we missed due to scheduling. I encourage all to tune in to John Lawrence’s session on Advocacy. Very, interesting and for me a “rev the engine” call related to health care policy. Good thing I am only a train ride away from DC. Although I do agree with John that local advocacy is often the best approach. You are pretty hard to ignore at the grocery store, church, or in front of their local building.

    • Stan Whie
    • July 12, 2018
    Reply

    Trish, this is a well-written, to-the-point, and accurate summary. Congratulations on a job well done and being the first into the breech. I hope that you will bring more of your excellent writing in the future.

    • Reply

      Thanks so much, Stan, for the positive feedback. It was great meeting you in person at the conference and hearing all you are doing to make NPH better known to the medical community!

  2. Reply

    Just wondering if you have NPH

    • Reply

      Yes, Melody – I was diagnosed with NPH and got a shunt placed three years ago. I’ve gotten involved with Community Networks and Peer Support Counseling with HA and wanted to take advantage of this great opportunity to learn more about both NPH and HA.

  3. Reply

    Great article Trish. As a former denizen of Southern California, I spent much of the time in a “what was I thinking” mode regarding my relocation to the East. CA climate can not be beat.

    Trish, I was struck by your comment that many with NHP may not like to travel. For me, NPH was the light bulb that ignited my travel gene. Before NPH, I never went anywhere as I was worried about public action to my NF (it causes tumors and bumps all over the skin) and people can be quite rude. But, after my ETV, I realized how silly I had been. I almost died and never let myself life. Since then, I’ve worn out my passport and encourage others to venture out, as well.

    As to program conflicts, for those who did not get the chance to hear John Lawrence’s advocacy presentation – now is your chance. It was fantastic and illuminating.

    • Reply

      Thanks, Janet, for your comments! I am so glad you are enjoying travel – I’ve just resolved to do more.
      I did watch John Lawrence’s presentation on advocacy and agree that it was fascinating. I also got a lot out of Krista Hanson’s session on cognitive and emotional changes with NPH and recommended the session on tips and tools for dealing with memory challenges to one of my peer support counselees. It’s great having the recordings made available to us and to those who could not attend the conference!

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