Recently, I was driving back home to Massachusetts from Connecticut with my three daughters in the car. My 22 year-old daughter moved into a shared living situation last April and this was the first trip we’d all made out to my mom’s since she moved out. I happened to be the one with the mental health issues this time, and for some reason driving home at night on the mass pike was almost more than I could handle. I was overcome with anxiety. I am not sure what it was, lack of sleep, combined with a bracing awareness of what’d we’d all been thru together and now here we were with daughter #1 back in the car, using all her ASD related coping mechanisms which never used to bother me. This time, I was gripped with almost panic! Somehow, I grounded myself by staring at the Wegman’s truck directly in front of me and prayed. Thankfully, we made it.
The neuropsychiatric aspects of a disease such as Tuberous Sclerosis Complex can be crippling. What is TSC? Click here. After much-lived experience in dealing with TSC related mental health issues, also known as neuropsychiatric issues, as well as my own refractory and integrated mental health issues. I am quite familiar, almost comfortable discussing. Due to the nature of TSC manifestations, particularly brain manifestations, these issues are almost unavoidable. In fact, I heard it tossed out by several different specialists, of the MD variety, that 90% of those diagnosed with TS, will be affected over the course of their lifetime by some level of neuropsychiatric issues.
Speaking of which, I was glad to attend some of the TAND (TSC Associated Neuropsychiatric Disorders) seminars given by Petrus DeVries at the World TSC Conference last month in Dallas, TX. Dr. DeVries developed the TAND checklist. This happens to be a phenomenal tool be given to all who receive a TSC diagnosis and then again screened at every office visit. Beautiful! I sat through the seminar with my jaw down around my feet, as it was almost a play by play guidebook, listing the multiple and many psych related issues with which we’ve dealt in the course of our family’s TSC challenges. I wish it was around when my kids were younger as I’ve mentioned, the mental health issues we’ve encountered both related directly to the neuropsychiatric manifestations of TSC as well as the fall out of managing these manifestations across the entire family, has been daunting.
It ain’t always easy to ask for mental health help over and over again and tell the story of TSC to unaware mental health professionals!! I vehemently encourage anyone involved in managing a TSC diagnosis to put a premium on their own mental health and be screened as well as their loved ones with TSC. Carry the TAND checklist everywhere you go
Parents, caregivers, other supporting players; If you don’t have your shit at least somewhat together as an individual and/or as a partner on this path of managing TSC, in whatever capacity, it behooves you to consider doing so. I don’t mean run right out and find a therapist, though that works too, at least make a mental note of this. The weight on relationships and a human, in general, can drive one not prepared in directions that one would never have imagined, and thus make it more difficult to be there for ourselves, and our loved ones with TSC. Talking about it out loud and knowing it is not all in your head and supporting each other are places to start.
It is this particular nuance of the overall cause of TSC awareness, that will be my personal platform for asking for contributions to the Marine Corp Marathon fundraiser I’m involved with as Team Ambassador. The carnage of my own PTSD and depression leaves me with a treatment program of proceeding one day at a time, staying grounded in the present and not allowing myself to be overtaken by past horrors, or projected future catastrophes.
As I’ve mentioned in past blogs, running as an outlet has been another tool that has been integral in my being able to manage the constant stress of dealing with uncertainty, that is TSC. I tend to bust out to run almost every day as I never know what potential crisis lurks in the shadows of the next 24 hours and having a good hard sweat under my belt, somehow helps tame the demons and wrangle the thought tangents that run rampant if left unchecked.
I have asked for money for this cause in the past (Boston Marathon 2016) and have been the recipient of an outpouring of love and support over the last few years. I’ve worked diligently to help my children with TSC gain the medical and psychological stability to each be able to overcome some incredible challenges to their physical and mental health and stand strong enough to start to make the journey to some level of independence.
I am grateful and pleased to report that they are all doing well! We have challenges every day in relation to some TSC related issue or some other life-related issue, but don’t we all have some kind of monumental challenge daily? I am often so inspired by others when I get the time to make a connection and hear that while not the same challenges, so many of us have overcome significant roadblocks to be able to thrive and contribute to their own realities, daily.
I am asking for your help. If you can support our fundraiser at this time, it would be wonderful. If you cannot, or already have, thank you and keep on praying for us. I would say faith has been an instrumental part of this journey for our family. The love from the local community, from behind the scenes, including social services, physicians/specialists, the Wachusett Regional School District, friends from past and present and of course, family and my soulmate. We couldn’t do any of this without you and let our cause be your cause as it is one that if a cure is found, has the potential to impact the outcomes for many other diseases and could truly bring much health and healing to many! Thank you isn’t enough, so stay tuned. I have a plan!
#mentalhealth #IAMTSC #TAND #Autism #Epilepsy #specialneedsparenting