Category Archives: #IAMTSC

Protected: The Personal Pitfalls of Chronic Disease (TSC) meeting PTSD

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Posted in #IAMTSC, addiction, autism spectrum disorder, Buddhism, epilepsy, medical conditions, parenting, Ram Dass, recovery, special needs, tuberous sclerosis complex | Tagged

Let’s get together and Podcast!

LISTEN TO LATEST How podcasting can build and gather information and motivate change within communities affected by rare medical diseases Creating podcasts within communities affected by a particular disease, and initiating the discussion between parents/caregivers/patients in an interview format, is … Continue reading

Posted in #IAMTSC, autism spectrum disorder, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | Tagged , , | 1 Comment

TSC & Mental Health

The experience of neuropsychiatric issues and TSC , TAND checklist, raising funds Continue reading

Posted in #IAMTSC, addiction, autism spectrum disorder, epilepsy, marathon training, medical conditions, parenting, special needs, tuberous sclerosis complex | Tagged , , , , , , , , | 1 Comment

Team TSC & The Marine Corp Marathon

My running pitch:  I can’t even begin to explain to you how much running has been an elemental coping mechanism in my journey with TSC.  For better or for worse, I have come to running as a corridor of freedom … Continue reading

Posted in #IAMTSC, addiction, autism spectrum disorder, epilepsy, Infantile Spasms, marathon training, medical conditions, parenting, Ram Dass, recovery, special needs, tuberous sclerosis complex, Wheaton College | 2 Comments

What Tuberous Sclerosis Complex taught me about love

A glimpse into the process of letting go of my 22 year old daughter who has TSC, to a shared living situation Continue reading

Posted in #IAMTSC, autism spectrum disorder, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | 4 Comments

Lost at the Big Y, STUCK at Walmart. A rather long rant.

When my son Jack was around age 3-4, he was a bolter. I mean a runner.  A dasher.  As in Dash from The Incredibles, dasher.  And fast!  The kid would just flat out beat a trail away from me at … Continue reading

Posted in #IAMTSC, addiction, autism spectrum disorder, Buddhism, epilepsy, medical conditions, parenting, special needs, tuberous sclerosis complex, Uncategorized, Wheaton College | 1 Comment

Infantile Spasm Miracles

“Infantile spasms (IS) is an age-specific seizure type that occurs in 1 out of 2,000 children from many different causes. Tuberous sclerosis complex (also called TSC) is a common cause of infantile spasms, with IS affecting about one third of children with … Continue reading

Posted in #IAMTSC, #ISAW2016, autism spectrum disorder, cannabis, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | 1 Comment

My son Jack was concerned recently that he had acquired Tetanus. Lockjaw.  He locked down on this notion and obsessed about it to the point of not being able to eat or sleep, was having trouble functioning at school and … Continue reading

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The Power of Ice Cream

We have this little issue with ice cream in our family.  It goes way back.  Way back in my ancestral tribe.  Maybe it’s something that goes way back for a lot of us, those first memories of eating ice cream, … Continue reading

Posted in #IAMTSC, addiction, Buddhism, Eckhart Tolle, medical conditions, parenting, Ram Dass, recovery, Tara Brach, tuberous sclerosis complex | Leave a comment

The Path…infused with Artisanal by Dad

My father died of fronto-temporal dementia in September of 2004.  He was an exceptional human being in the way we all are exceptional human beings, however, he knew it.  He was a paratrooper in his early twenties and jumped out … Continue reading

Posted in #IAMTSC, addiction, Buddhism, medical conditions, parenting, Ram Dass, Tara Brach, tuberous sclerosis complex, Uncategorized | Tagged , , | Leave a comment