Indeed. I am back from my trip to New York. A trip that was so much more than sightseeing and shopping. A trip that was almost too good to be true and a trip with experiences I will never forget.
We arrived in New York on Thursday, September 18th and after an 8 hour flight me and my mom made it to the hotel in New Jersey. We decided to rest a bit and take our time to get over the jetlag. The day after, we went to see the City. It was very weird to be back there again after 2 years. It fellt like coming home.
Saturday, September 20th. It was the day of the conference. The conference which I was looking forward to for almost 4 months. The conference that would hopefully give me more information about my non-epileptic seizures and the conference that would make it possible for me to meet others with the same seizures. In my head it sounded like a dream and of course I was very nervous to go there. It was held in the Sheraton Hotel in Mahwah, New Jersey and one of the people I met in a Facebook group about the seizures offered me to pick me and my mom up to go together to the hotel. This already was a sign for me and my mom that this day would become amazing. The open-heartedness from a complete stranger that feels the exact same when it comes to seizures blew my mind. We arrived at the hotel and right away I met two other amazing people that I had only talked with on Facebook. These two are the sweetest! We all sat down in one of the 5 conference rooms and the conference officially started. It was surreal to see the author of the book about non-epileptic seizures in real life, Lorna Myers Ph.D. and as far as I am concerned an expert in the field of PNES. As soon as she began to speak all my worries and stress were gone. A sense of relief took over, so much that I still can get emotional over it. I was in the right spot, with the right people that day. All day there were several lectures by several neuropsychologists and social workers covering all the aspects concerning PNES, the EEG’s, lifestyle with PNES and the caregivers. (ALL of you that support me may not be forgotten!) We had an amazing breakfast and lunch in this amazing hotel with a lot of people that are going through the same things every single day. There were stands with dr. Myers’ book and PNES charms. I got two extra copies of the book and a lot of charms! (If you want one, let me know). After the conference we had time to ask questions and we sat down with both patients and doctors to discuss how we are going to raise awareness. Great ideas were brought forward and I became very inspired and motivated to keep doing what I am doing right now. After the conference, me and my mom went back to our hotel. We were exhausted of all the impressions and information of that day. Very tired but extremely satisfied we fell asleep…
The conference also made some things very clear:
If there are 10 epileptic patients in a room 3 of them have PNES. This is a shocking number and raising awareness is essential to prevent people from getting the wrong diagnose and (dangerous!) medication. Therefore, I will keep blogging about my experiences with PNES and I have some great ideas for the future!
Thank you all for my reading my blog and supporting me. You give me energy on the days that I have attacks and I am even too tired to shower. 🙂