Thursday, September 24, 2015

Speaking of Neurofibromatosis!

So, after a WHOLE LOT of convincing attempts from my hubby, I finally downloaded Periscope. An app that I knew very little about, but thought I would play around with it, to see what all the fuss was about.

After watching a few live streams...I wasn't so sure this was for me.  I mean, I am ALL for walking your pet turtle with a leash...And watching live feeds of people brushing their teeth...But it all seemed a little silly to me.

That is, until my hubby helped to record my OWN live stream.

You can check me out on Periscope by searching for NFMOMMY.

Let me know what you think...And comment with some ideas!  

I would love to Periscope once a week (or so) and talk with others around the world that are living with NF...Or those who are just curious about what it is like for someone living with NF.

Talk to me.  I'm listening!

1 comment:

  1. Our daughter has NF1 and was diagnosed at age 2yrs old with an optic nerve glioma and after two sugeries, the loss of vision in her left eye and a 1-1/2 yr chemo case study that tumor is dead. She also has learning challenges( is dislike disabilities, it's negative) and had some speech help when younger. Now fast forward to July 2015 and she's now 24, healthy and no further complication until a headache, stiff neck and nausea. At the hospital an MRI which showed another brain tumor, a polocytic astrocytoma. She underwent surgery and 90% of the tumor was removed and PTL she suffered no neurological defects or vision loss. Now fast forward to this past weekend, she again started with headache, stiff neck and nausea. Back to ER, MRI shows remaining portion growing quicker than anticipated. Now we're waiting for a seonc opinion because her neurosurgeon says he's not willing to do further surgery, but that a specialist may well be able to remove more or the entire remaining portion,if only partial removal would mean radiation. So we wait now and that is NOT my strong suit. Glad to see more and more people talking about this, we live in rural Montana and there is very little to no support or even doctors who know much about NF.