Dear Fellow PTC Survivors and families,
I want to update you on what we at the Psuedotumor Cerebri Support Network are doing these days. Although you haven’t heard much from me in the past five years, I’ve been busy behind the scenes. For new comers and veterans alike, I will give you a quick personal rundown, and then on to exciting news and business for the network in 2004!
Five years ago my PTC and complications caused a chiari malformation at the base of my brain. I underwent a grueling brain decompression surgery and hoped the problem was solved. Simultaneously, my husband of ten years left our family leaving me a single mom of Megan, now 9, and Michael, now 15. Of course, I went through all the financial devastations many of us chronic PTC survivors have endured. During recuperation, I lost my dream house, autos, etc. Needless to say, my story is not unique. When I started this support group 11 years ago it was largely in response to your similar stories, which you have shared with me. The good news is I have survived and have even flourished in ways I could never have imagined!
My very talented and generous sister, Sondra Johnson, volunteered and took over complete operations of our PTC support network when my health deteriorated over 5 years ago. Under her management and care we grew and we grew and we grew. She single handedly brought us into the 21st century and has done all this web work, Internet information distribution, etc. so that we have more than realized my original dream of reaching as many people with PTC as possible! Sondra also wrote our informative book “The PTC Primer” along with Dr. Susan Benes M.D., our extraordinary neuro-opthamologist in residence. Dr. Benes and I started this whole support network 11 years ago and her many contributions have been invaluable. Our primary goal has always been and always will be to share the most current, accurate information about this disease in plain English that we the people living with this disease and our families can understand. This is a very complex disease but we strive to make it understandable and to educate.
My sister, Sondra Johnson, launched a real estate business a few years ago. It has become very successful and grown (she just has that golden touch, and puts in of hard work!) as my health improved I made plans to take over the management and operations of the PTC network once again. First, I had to learn how to use a computer, which for me has been a huge challenge! Incredible gifts came (such as my office in the closet) complete computer system, etc. from local Heritage Christian Church volunteers here in Columbus, Ohio! This made it all possible as we operate literally on a shoestring budget with our soul financial supporters being the remarkable Lions Club of Tionesta, Pa (support your local Lions Club, if weren’t for them we wouldn’t even be here!), which reminds me we haven’t asked you our members for donations in many years, but we are really going to need your financial support (anything you can give) in 2004 to manage the exciting new forum we will be announcing shortly. We will contact you soon re: fund raiser but know we except donations always!
Unfortunately, after being up and running with the network for only 6 months, my health has again taken a very unexpected turn for the worse. In November, my daily pain began to increase and by December 2003 numbness and coordination became problems. After many tests and a doctor who really listened (bless you, Doctor Benes) I have now been diagnosed with Syringomyelia. Additionally the chiari malformation is back. This is all very rare but the good news is my other sister, Karen Matis, who is also incredible, has found a neurosurgeon, Doctor E. Benzel M.D. at the Cleveland Clinic, who is very knowledgeable and experienced with this rare disorder. Sooo, I am off to the Cleveland Clinic for the first surgery on February 10th, 2004. I welcome your prayers and good thoughts as my incredibly supportive family and I struggle through these coming months.
So enough about me, we do have big exciting news for the support network! In addition to providing information and educating PTC patients, we are very aware of members great need to communicate with fellow PTC survivors. Sondra and I have the privilege of communicating with all of you, we now have over 2,000 members in our database (I started with 7 people here in Columbus 11 years ago…. Wow)! We have struggled to find a way to link interested members together and thanks to the genius of computers and my sister, Sondra, we now have a way! I will allow Sondra to explain our BIG NEWS as she is taking over that part of our support network once again.
My precious niece, Bethany, 14, has helped me immensely working emails, managing the database, connecting kids with PTC, etc. and she and I will work as a team on these aspects through surgeries and recuperations (at least that’s the plan, we can only hope). With so little manpower and so much work, we can no longer communicate via telephone, however we hope the new forum will give you the support, friends, and buddies that you so need and deserve and we can focus our time where we have the biggest impact. Please email me at anytime: ptcduncan@juno.com just know that sometimes it takes a week or so before Bethany and I can work together, but YOU are why we are doing this. God Bless!
Founder of PTC Support Network:
Jennifer A. Duncan