What do you say when you’re asked that question? If you’re someone whose life is affected by having hydrocephalus or a loved one who does, the answer is probably complex and long–more than you could ever convey in an easy one-word answer that usually people expect to receive when they ask. Even a series of one-word answers would belie a much longer explanation.
I know for me, as a parent of someone with hydrocephalus, the words might be “afraid,” “exhausted,” “relieved,” “sad,” “skeptical,” “hopeful” or “grateful.”
What are your words?
We would love for you to share your words and the sentences behind your words at our next meeting of the Philly Hydrocephalus Support Group this Sunday, Nov. 11, 2012 at Abington Memorial Hospital The meeting is 4 – 6 p.m. If you’d like to attend but can’t physically, perhaps we can link you by phone.
I also have updates to share about the Hydrocephalus Association and some new research initiatives under way and would like to discuss resuming having the walk next year.
Our meeting is open to all who are affected by this life-threatening condition.
For more information, please contact Paula at email@example.com.
Hope to see you there!
Dr. Jason Hartman, an osteopathic doctor who treats patients with headaches and head pain, will present at the next Hydrocephalus Philly support group meeting on Sunday, Sept. 9. The meeting will be from 4-6 p.m. at Abington Memorial Hospital.
Osteopathic doctors take a different approach to treating patients, often using techniques to manipulate tissue. For some, like Dr. Hartman, Chinese medicinal methods are incorporated into treatment, such as acupuncture or cupping.
Dr. Hartman treats patients who have hydrocephalus and headaches as well as other brain-related issues.
Please come out and join us!
Don’t miss the March 11, 2012 meeting for the Philadelphia Hydrocephalus Support Group when neuropsycholigist Reem Tarazi, PhD, ABPP-CN will discuss neuropsychological and learning difficulties often faced by those with hydrocephalus. Dr. Tarazi is an assistant professor with the Division of Neuropsychology/Department of Psychiatry at Drexel University College of Medicine. She has evaluated patients with many
different diagnoses, including hydrocephalus.
Our thanks to all of you who have reached out through our site or through the Hydrocephalus Association’s site to find us…your local community in the Philadelphia area. We are so happy that so many of you came out to our support group, Hydrocephalus Philly, in meetings we held in May, July, September and November. This was our first year.
Because of your response and because many of us must still contend with issues related to suffering with hydrocephalus, our group is continuing in 2012. Please see the dates of our meetings below. We will continue to meet at Abington Memorial Hospital, 1200 Old York Road, Abington, PA 19001 once every other month on Sunday afternoons from 4 to 6 p.m.
We hope to once again bring in experts to present to us and also answer our questions. We are looking to bring in experts in neurosurgery, psychology, biofeedback and resource experts to help direct us to other sources for help.
We are also hoping to having a special little side group for the teens and young adults who have been coming to our meetings for their own open discussions. However, we would also like to offer our fellowship to adults and senior adults who are experiencing issues related to hydrocephalus. the kinds of speakers we bring in will be determined by the group’s needs.
So, thank you to Drs. Jamie Cook and Greg Heuer for their informative presentations and frank discussions with our group. And also, thanks to Chris from Aesculap who showed us how the shunt system works. A special thanks to Linda Levitzky for another great year of dedication to making the Philadelphia Hydrocephalus Walk happen.
We are a community that can learn from each other and share insights and help. Please consider joining us in 2012 at one of our meetings.
May 20 (4:30-6)
See you next year!
Paula and Mike Kidd
Please join us at our next support group meeting when Dr. Heuer, who earned both his MD and PhD from the University of Pennsvlvania, brings a wide range of experience in pediatric neurosurgery. His areas include surgery for brain and spine tumors, con-genital spine disorders, hydrocephalus, seizure disorders and complex spinal deformity.
There will be research updates and free resource info available. Most importantly, there will be others like you who know the challenges of this condition.
Date: Sunday, Sept.11, 2011
Time: 4 – 6 p.m.
Place: Abington Memorial Hospital, Lenfest Pavilion, Room P, 1200 Old York Road, Abington, PA 19001
We will also give an update on research activity through Hydrocephalus Association and an update about the Philadelphia Hydrocephalus Walk on October 8. It’s coming up sooner than you think, so sign up now.
Thanks who those who came out to our July 10th meeting. We always learn something new, especially when we get to see shunts up close and in your hands. When you learn you need a shunt, there usually isn’t time to get to see them in advance.
We appreciated Chris’ presentation from Aesculap. Coming up in the fall, our next meeting will feature a neurosurgeon to discuss hydrocephalus and answer questions.
Also, if you haven’t signed up for the hydrocephalus walk, c’mon! We need your support. We need to make sure to raise enough money just to pay for the walk. Research is our hope to avoid further surgeries. Please consider joining us in pursuit for alternatives. The link is at the top of this page.
More to come,
Our next meeting on July 10th is going to be packed with opportunities to get more information. We have a representative who will speak about shunts and show how they work. Attendees are welcome to ask questions. We will also talk about the upcoming Walk to raise awareness and funding for more research for hydrocephalus. And of course, there will be opportunity to share information and experiences with each other.
Please come out for a couple hours Sunday afternoon…you’ll be glad you did.
Also, be sure to plan on coming to our September meeting where we will have a neurosurgeon join us to answer our questions and share the latest on hydrocephalus solutions.
Sometimes you’re forced to sit up in the middle of the night on that uncomfortable sofa in the hospital room of your child. It’s either the constant noise of monitoring machines, sound of your child moaning or your own fears about the surgery in a couple hours that keep you awake. No matter how many are around you, you can still very much alone.
The fact is that all across the country, there are others like you sitting for that same anguishing vigil. Perhaps that is little comfort in those moments but hopefully after the relief of a successful surgery, you can take comfort that maybe others can help you navigate this tough road.
Whether you have or need a shunt, the issues, emotions and questions you have related to hydrocephalus can be addressed among others who know the feeling.
Please join us at our next meeting on Sunday, July 10, 2011 at Abington Memorial Hospital at 1200 Old York Road in Abington, PA. The meeting is in the Lenfest building on the ground floor from 4-6 p.m.
If you can’t make it but would like to learn more, please post to this blog.
We hope to see you there. If you have any questions, please email us at firstname.lastname@example.org
All the best,
We had our first Philly Hydrocephalus support group meeting yesterday and had a very nice turnout. It was small enough to get know each other better and share our knowledge about resources. It was big enough to have different ideas and experiences to draw from.
While we all carry a burden, I think most of us were moved by each other’s experience and want to reach out and help in any way can.
The biggest theme I saw yesterday was hope. We hope to fuel more hope for our families by bringing in informative guests for our next meetings. We will be trying to get a neurosurgeon visit to offer some insight and answer some questions. We are also going to have a neuropsychologist come and share some insights with us.
Our next meeting is Sunday, July 10 from 4-6 p.m. at Abington Memorial Hospital. Stay tuned for more information. Please share your thoughts with us and let us know how we can help.
After months of planning, we’re ready to launch our first HydroPhilly support group meeting on Sunday, May 22, 2011. The meeting will be at Abington Memorial Hospital just outside of Philadelphia at 1200 Old York Road, Abington, PA 19001. It will be in the Lenfest Pavilion in rooms P&G. The meeting will be from 4-6 p.m.
The meeting is open to all who are afflicted with hydrocephalus or families of sufferers. Our first meeting will be a pizza party and information exchange.
If you have questions or would just to talk to someone else who understands this unique challenge, please come!
We’d also like to hear from you about what we can focus on for future meetings, which we hope will feature expert guest speakers familiar with hydrocephalus.
Please comment below if you’re coming or want more information.
Hope to see you there!