Seizure Disorder

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Seizure Disorder
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    I'm new here!

    Hi, my name is Andrew Maynard. I'm here because I've been living with a seizure disorder since I was 3 years old.


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    Guiding Principles in Conflict with Survival Instinct

    Part 1 of 2 What would you do if, for 4 months, you had been trying, to no avail, to receive treatment for an excruciatingly painful infection in your jaw? The reason you have received no treatment was because your HMO dental insurance was unaccepted by all but one dentist in your area who required you to sign an $11,000 loan contract with a super high interest rate and $400 monthly payments before providing services, you have transportation barriers; you are on a small, fixed income and are unable to pay for treatment out-of-pocket; and, your debt-to-income ratio prevents you from qualifying for the usual credit programs. In addition to these barriers, you have found that, despite your condition originating as a dental issue, it has escalated to a medical issue as verified by your medical insurance carrier; however, no MD will treat this condition for the same reason as the dentists—they refuse to accept your medical insurance.

    Being in this predicament myself, the best solution I could come up with was to drop the HMO dental insurance that was unaccepted by dentists and sign up for a PPO insurance that would be. Unfortunately, this PPO dental insurance is through my Medicare Advantage medical insurance as a supplemental coverage and only one dentist in my area is accepting this one, as well.

    At first, I was overjoyed that this dental clinic would accept my insurance and I took the soonest possible appointment. Sadly, when I looked at my benefits documentation, I found that the sales representative had misread the outline of the coverage. She told me the coverage was 70%. I found out it is the copay that is 70%.

    I am looking at an exam, x-rays, cleaning, scaling, root planing, and oral surgery with three extractions including general anesthesia preceded and followed by antibiotics and prescription pain medication. My estimated 70% share is $4033, before tax, with a $2000 deductible required to be paid before the insurance will pay the dentist. So, the dentist requires that I pay my entire copay upfront before they will provide services. Add to this figure the prescription copay for the antibiotics and pain medication as well as the $86, before tip, round trip ride-share fare. Even if I had a vehicle (a seizure disorder prohibits), the transportation would still be required because of the fact that a person undergoing general anesthesia is prohibited from driving within 24-hours of regaining consciousness.

    It is important to note, Ride-share from my semi-rural location is hit and miss with reliability. Most drivers, upon seeing that the pickup is outside the metro area and only around 16 minutes in travel time, will decline the fare.

    I am unable to rely on friends and family. The last time I asked my son for a medical ride he told me, “If you can’t take care of yourself, maybe, you belong in a nursing home. Don’t bother me.” Friends tell me either they work and are unable to take time off during business hours for a non-relative or that they have their own problems to deal with. I know these are excuses; because, I have told the working friends that I am willing to catch a ride to the clinic on their way to work and wait until the friend gets off work for a ride home and just bring a book to occupy myself while I wait for the clinic to open, spend all day there, and wait for the friend after the clinic closes. I also offer gas money and dinner. Their answer stays the same. My offer goes to the friends who say they have their own problems. Their answer stays the same and they only contact me, never to inquire about my condition, but because they want something from me.

    So, there are community agencies I’ve reached out to for medical transportation—37 of them as well as the local Catholic Charities and Jewish Community Services. The community agencies have all turned me away; because, they either require I qualify for Medicaid or tell me I am out of the service area at my semi-rural address. I am ineligible for any Medicaid program; because, my gross income is $200 over the limit. The Catholic Charities representative told me COVID has tapped out their resources and they are unable to help me. Jewish Community Services has failed to return any of my messages. I have inquired with 211 and there is no transportation services they offer near me.

    There used to be two transportation services available to me before COVID. There was a public transit bus; which, used to pick up the tenants in my area twice a month and take us to Walmart. From Walmart, we could access the public transit metro lines. This flex ride service was discontinued when one of the regular passengers, the man who advocated to get the program started, passed away. We were told by the transit system that the ridership was too low—because one passenger died!

    The oth


    rival coaches working together

    Over the years I have been asked how did I manage to be a three season runner and more importantly to   be so respected everyone despite of having an NVLD and a Seizure Disorder.  What comes to mind is how my coach,Penny Sharrow, was so welcoming to me on the Varsity Winter and Spring track teams.She never treated me differently than my other teammates and through this Canton’s coach,John Casserly and other runners became close to me as well.By being so accepted and valued  I thrived as an athlete and as a person therefore I greatly believe being part of a team shouldn’t be so rare for someone with an NVLD.

    This all started because Coach Casserly had known me from Cross-Country and was so impressed by my determination and perseverance. Having coached cross-Country and track for several years he had witnessed several athletes with similar difficulties give up way too quickly.  He gave me  extra support from the beginning till the end of my athletic career.What is special about this though is he always made sure Penny had already given me my pre and post race race talk  as he knew Penny was a fantastic coach and that she was incredible to me.

    One of my most memorable moments was being able to lower my time by a minute as for the two of them this was like I had won the race. At first,  I thought their excitement was too much though I quickly realized it wasn’t as I was always told I couldn’t do varsity sports and these two coaches proved that theory to be wrong in the early years of my track career.  As time went on there were other moments like this for the many different races I ran and Penny and John were always giving me fantastic guidance and advice despite knowing I was always going to be slower than everyone else.

    Due to the nature of my gross motor skills deficits along with a seizure disorder I never really got close to the performance level of the other distance runners despite my hard work. However for Penny and John too this was truly just a minor issue as what really mattered was that you did your best and did whatever you can to help the team and for me it was just to earn a  point for finishing each race. It truly taught me that success has a different meaning for every individual and hard work  can truly outweigh overall talent at times. Honestly,  I learned so much from distance running under their guidance and in the process was able to overcome the gross motor and social  deficits connected to my NVLD too by competing regularly and being with a great group of teenagers on a daily basis.

    Understanding this led to me to becoming close to a few top runners. An example of this was during Winter track. The regular winner of the 1500 who ran for John always wished me good luck and waited for me at the finish line. This continued throughout my high school career and she was joined by one of her teammates  Cara and today the two of us are still great friends. Therefore I just wish more would understand how inclusion in a sport like track works so well as coaches and others love the most determined and supportive athlete and understand that success is all about doing your best.

    Therefore by Penny Sharrow and John Casserly being incredible mentors to me , and other runners  supporting me and having some became great friends I believe inclusion works for individuals with an NVLD or a similar disability in sports. That being said inclusion just doesn’t happen. It requires hard work on your end and being able to trust and listen to your coaches.This starts by being honest about yourself and setting up realistic goals with your coach.With an  excellent work ethic and high level of determination I can say with great confidence that  coaches will become incredible mentors and many athletes will be come wonderful friends to you too.

    Overall it is important to remember it  truly takes a village to raise a child so being and being an athlete increases the size of your village as your coaches and teammates support you. For me Penny and John’s endless  guidance and support  enriched my life  greatly so I strongly believe through hard work and determination you will have the same feelings about your own coaches and other coaches you meet. The same can be said about the friendships you will make with your teammates and other athletes. So think of giving it a try. I know you will think the world of your mentors and friends.



    Family .. #familyissues #Epilepsy #FamilyAndFriends

    So when I was 12 I finally told my mom her brother was sexually abusing me she has 10 brothers and 9 sisters and I out of that have lots of cousins and that's when my world really changed we went to court and her family decided to be on her brother's side and blamed me for putting him away and now I'm 27 and they all still treat me so badly ...I mean if I went to a family event I'd sit alone and not one person out of the huge family would talk to me ...sometimes I think I was just born to take all the bad stuff...nothing good happens he melosted me from 6 to 12 years old and then from that my mom's family turned on me and still do I now have a seizure disorder and suffer from anxiety and depression and ptsd and bpd and have attempted suicide many times and self harm I still struggle with all this and blame myself every day ...I just want a family that's loves and wants me even my mom and me aren't close ...maybe if I go away she will be happy but then I won't be yes I'm married...and I'm so grateful to my hubby ..why can't that feel the void ...what else do I require he loves me more than anyone ...why do I still feel empty ..any thoughts ???


    I’m new here!

    Hi, my name is cheesyknucklehead. I'm here because I’m going through an unexpected divorce after 15 years with someone I considered my best friend. My soon-to-be ex decided that bc I’m currently unable to make money, due to my many illnesses (many he knew before we married), that I am unworthy of love, kindness, and respect. He decided that I must be lazy, even though he’s seen my fight for years to get better (therapy and medication have been life savers for me). I’ve studied so much about trauma, PTSD, depression, anxiety, childhood abuse, etc for years. But now it’s a whole new perspective for me as I begin a new chapter of my life that I never expected. I’m in the beginning stages of the divorce, as well as having just been diagnosed with a seizure disorder (non-epileptic). I have ADHD-C, Major Depressive Disorder, Generalized Anxiety Disorder, C-PTSD, Seizure Disorder, and Excoriation disorder.

    #MightyTogether #PTSD #ADHD #Anxiety #Depression #ADHD #cptsd #seizuredisorder #excoriation #psychogenicseizure



    I’m in hospital EMU (epilepsy monitoring unit) and this is my 6th night. I got told tonight to prepare for discharge tomorrow. It’s not guaranteed but that it’s likely. I’m struggling. I have so much going on ME, Endometriosis, Fibromyalgia, Pelvic Dysfunction, IBS and now tomorrow I’m going to get another to add to the list. Either epilepsy or non epileptic seizure disorder. Before coming here I thought if I got epilepsy diagnosis I’d be happy. It’s a truly diagnosed clear illness with medication to control it. Good news and different from so many of my diagnosis over the last 4 years. Now having been in a ward with people who have been living with epilepsy for years I realize it’s not that straight forward at all. It’s a hard road and very trial and error. But however horrible it may sound the alternative just sounds awful too. Another diagnosis with no clear cause and no clear method of stopping me from having seizures. Another diagnosis that steps me away from getting back to the life I should be living at 32.

    I apologize for what probably comes across as a real winge and feel awful for those living with epilepsy that I might have been thinking to wish the diagnosis upon myself seems so awful.

    I just need to try and clear my head to allow myself to sleep and so thought I’d put it out to the ether.

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    What do you wish others knew about living with a seizure disorder?

    In honor of 💜 Purple Day for Epilepsy Awareness 💜 tomorrow, we'd love for you to share what it's like for you to live with a seizure disorder. What do you wish others knew?

    Warm Reminder:
    Your voice, feelings and experiences matter 💜. You are a valued Mighty warrior.

    #Epilepsy #SeizureDisorder #GrandMalSeizures #TonicClonicSeizures
    #ChronicIllness #Disability

    1 reaction 2 comments

    I’m new here!

    Hi, my name is Emily. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #seizure disorder#ibs #Anxiety #Depression #PTSD #ADHD