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Writer's pictureMarissa DeVaul Parmer

Wellness Wednesday=Why Financial?

Reminder Of The Dimensions Of Wellness

Wellness comprises of eight mutually co-dependence dimensions: emotional, physical, occupational, social, spiritual, intellectual, environmental, and financial. If any one of these dimensions is neglected over time, it will adversely affect one's health, well-being, and quality of life.

Financial Wellness Defined

Financial is not one most people consider a dimension of wellness, yet it typically is the one that wrecks havoc on all other dimensions. Financial wellness is a state of being in which you can fully meet your current and future financial obligations while feeling secure in your financial future ...Now imagine you find out you or a family member gets diagnosed with some form of epilepsy. Now you have those unexpected financial obligations and or cannot work and lose money while trying to at least receive disability payments.

To Give You An Idea Of The Cost Of Living With Epilepsy

Please keep in mind this is an estimate just to provide a picture of what those living with epilepsy themselves or a family member endure potential financial hardships. Every family's situation will be different.

This is after, like myself has gone through numerous doctor appointments, EEGs, hospitalizations just to discover and be diagnosed with my various types of epilepsy. Mounting up bills upon bills.

Flying to the Mayo Clinic, due to that was the only location that I could be treated for multiple types of epilepsy in one location, roughly $250-$400 a flight person once every 3 months. Thankfully now we live in Florida and it is now just gas money and meeting my folks or my husband travels with me and we stay with them. Prior to that, there was also hotel costs roughly $500 a time.

Medication costs we have mail order every 90 days: $15,500. This can change based on medication changes, but we are the lucky and have health insurance. Due to this it is about half that costs, if it is covered.

RNS Implant, the device itself is $50,000. Now add in the 4 day hospital stay, surgery doctor, neurologist, etc. Those were over $100,000.00. Not to mention my battery died and needed it replaced 2 years later. Every 3 months go back to have the RNS algorithm changed by the RNS engineer along with my neurologist appointment, anywhere from $500+ an appointment.

In patient or out patient EEGs when needed sometimes annually roughly $20,000-$50,000

Annual and bi-annual cognitive testing, along with bloodwork...changes all the time.

This is just a glimpse, and as I said we are fortunate we have my husbands insurance, which helps, I have my medical retirement for income, as well as my medical disability checks. Many others do not have that, and are struggling. We also were fortunate for family and friends with a Go Fund Me Page when my RNS was implanted. Family also has assisted us since then, which I will forever be grateful and can never repay them enough.

Why I Am Sharing The Estimate Of What We Pay

I am not asking or wanting pitty and no one else that lives with uncontrolled epilepsy is either. We just want others to understand, you just can't pop a pill and have no seizures. This is a major reason those living with epilepsy cannot get the proper care needed, they simply cannot afford it. Adding the extra stress which provokes more seizures, and then flows over to other dimensions of wellness.

We have two sons in college, and I feel guilty anytime we cannot help them due to any doctor/epilepsy situation we end up in. I am fortunate in having two very understanding sons. A very supportive husband that reassures me my health needs to be the best it can be, no matter the cost of medical bills as they need me at my best.

We Need A Cure Of Epilepsy For All The Reasons Above And More! Just A Glimpse!

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diana
28 jul 2023
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I think the financial component is one that isn’t talked about very much. Thank you for reminding us of the far reaching impacts of epilepsy.

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Marissa DeVaul Parmer
Marissa DeVaul Parmer
28 jul 2023
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Thank you. Many do not realize with many chronic conditions, there are lifelong expenses on top of the unexpected along the way. All while trying to support family. 💜❤️

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