Conversation Interruptions - You are not alone. Help your loved ones understand why u interrupt them so much

Symptoms and Treatments Complementary Therapies
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Hi everyone. I am a Severe TBI survivor of almost 30 yrs. On 12/2/1992 - - I suffered SEVERE Frontal Lobe damage & 2 comp fractures in my spine - T1 & T2 due to an MVA. I was thrown thru the windshield of a semi truck (18 wheeler). I wasn’t wearing a seat belt. The accident resulted in an immediate state of unconsciousness for a days & the subsequent & permanent inability to RETAIN memories. Short Term Memory.

I went back to work 3 yrs post-injury, but with MANY challenges. After working successfully for over 12 yrs, I wasn’t aware that one of my anti-seizure meds needed to be re-evaluated & the dosages increased. I discovered this after I had 3 seizures in 3 months - two which involved vehicles & my loss of driving privileges for a year. (Law). Both cars totaled. I can relate those stories later - TRUE MIRACLES (one in Atlanta that involved crossing ALL 8 lanes of I-285 before going down an embankment). YES - ALL FOUR LANES on each side! The North and the South bound lanes.

Please ask any questions concerning my head injury or spinal cord injury. I will freely offer proven ways to cope.

Now to the good part! I have learned MANY, MANY ways to handle the CONSTANT challenges of memory issues. Like remembering what day of the week it is. Where I parked my car? People’s names. People’s birthdays. There are MANY tools to be used that can be adopted in simply hours or a couple of days!

Please email me ANY day to day COGNITIVE or MENTAL challenges you are having and I feel I can offer strategies and ways to overcome our daily aggravations …

… I have overcome many of these thru bumps and bruises and I can help you save TIME, MONEY and HEADACHES !! Talk to me …

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Hey Trey,
Welcome to Ben’s Friends.
I too was involved in a MVA. At the time I was a young child and the technology for seeing inside the skull was nil (Only xrays available back then). Although I complained of headaches I was told ‘Ohh just a bump on the head, but all OK…’ the problem was it was not ‘All OK’. It wasn’t until many years later that they established there was a bigger issue, then they operated and I’ve been on a surgical rollercoaster ever since.

My memory has been a HUGE issue. It used to be one of my better assets, but after each surgery the decline has gotten worse and worse. I ‘try’ to keep a diary to assist in remembering dates, appointments and tasks I need to complete, that is… when I remember to write it down.

I use a few differing strategies to manage day to day. Some days these work well, other days, not so well. I just never can tell what the day will bring. As I often explain it: “Some days I can leap a tall building in a single bound (OK, so a bit of an exaggeration) but then some days I’m lucky to be able to crawl out of bed”.

Let us know, what strategies do you use?

Merl

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WOW ! TY for the fast reply! … Ok. Some simple Q/A’s … Do you have a cell phone? I will assume you do. Mine is MY LIFE. I am on 3 meds each morning and 3 meds each evening - EVERY DAY for the rest of my life. How do I rem to take them? Here is what I do : I have THREE programmed reminders for EVERY morning and THREE programmed reminders for EVERY evening built into my phone. The 1st msg says “You need to take your meds soon”. 5 minutes later, the next one says “take your meds - NOW.” After another 5 minutes, the 3rd one says “Did you take your meds?” These messages can be programmed to repeat for as long as you wish - even forever. I have mine programmed to go off at 9am and at 8pm - EVERY DAY AND EVERY NIGHT. By developing this aggravating habit of having to remove a “reminder” each time that you go to use OR ANSWER your phone - it will help you improve your “habit” with the hope that you may ingrain it better into your schedule of “Life”.

When you spoke about your memory had been a HUGE issue and that it has gotten worse and worse - it reminded me of what I thought things would be like 20 years ago. Each visit to my neurologist I kept saying to my doctor "I think my memory is getting BETTER!! My doctor calmly and professionally told me my memory is not and will NEVER improve - but that I COULD and WOULD LEARN to deal with it better. In hindsight - he was right. I asked my girlfriend earlier tonight - what month is it? Now, I could have and should have looked at my phone OR thought harder and I would have figured it out (I think…) - but my loved ones understand my shortcomings and are always eager to answer my frequent and redundant questions. It is VITAL to surround ourselves with people who do NOT confuse our memory issues with our intelligence. THAT - is something that deeply offends me. Nothing has changed or happened concerning my intelligence (as I am sure is the case with you). My memory is often pathetic - but that is not the same as a lack of intelligence or understanding.

Just so you know. My accident was in 12/92 and fortunately is was worker’s comp. I settled a couple of years later and went back to work. I eventually got a white collar job making over $50k a year and I enrolled in Long Term Disability. THIS was one of the greatest decisions of my life and the reason I can sustain myself to this day. It was while I was at THIS company teaching classroom safety courses that I had my almost back to back seizures and had to finally go onto SSDI. God had mercy on me and I thank Him for each and every day. I hope to help others … Sorry I am talking your head off - but I have ENJOYED my life since my TBI from 12/2/1992 … Because I have surrounded myself with people who love me and accept me and understand my shortcomings …

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Hey Trey,
Having ‘people who love me and accept me and understand my shortcomings’ is a BIG thing. Some people ‘get it’ but then many don’t. I’ve tried to educate them but those blank looks actually speak volumes, they have no clue. My initial MVA was in the mid 70’s and although there was issues, none of them were aligned until the mid 90’s when the excrement REALLY hit the fan. From there it has been a rollercoaster of hospitals, dr’s and surgeries.
After the first surgery I returned to work, but I did so way too early, doing myself more harm than good and needed another operation. I was told ‘all fixed’ but it wasn’t. I’ve now had 6 neurosurgeries and a couple of related operations. I have a shunt (a plastic tube in my brain) draining CSF down into my intestinal cavity. Being plastic, it deteriorates over time and needs clearing or renewal occasionally. My last neurosurgeries (x3) were in 2013 and I haven’t been able to return to work since, which has been REALLY annoying to say the least.

Do I have a cell phone? Not anymore. I had it disconnected a couple of months ago as I was paying for a service I simply wasn’t using. Some of my meds are ‘with food’, other meds are PRN or ‘as required’, so whether the meal reminds me or the headaches remind me, either way I seem to maintain the meds…OK (My wife would disagree, as she’s forever reminding me I need to take the pain meds as I look bloody awful when I need them and she can read me like a book).

As for my memory, with each surgery it’s become worse and worse. I often jokingly say ‘there’s nothing wrong with my memory’ then turn to the wife and say ‘Now, who are you again?’ she knows it’s a joke, but also knows there’s a bit of sarcasm in it too, because we both know my minds like a sieve. If I don’t write it down, POOF, it’s gone.

I too was lucky enough to have, firstly, income protection insurance which lasted for 3yrs and then Total Permanent Disability (TPD) insurance. I had every intent to be returning to my former role and even returned to work on minimal hours, but I couldn’t maintain it and then the last operation really did me in. The TPD allowed me to payoff my mortgage and then I applied for the Australian equivalent of SSDI.

Merl

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REALLY appreciate this email Merl … You and I have ** MUCH ** in common. Can I ask you this? Do you have a fear of death anymore? I don’t. Its not that I am “suicidal” … I am just content with my passing … whether now or 20 years … Strange. I have had MANY visions and dreams that have come true. Many. Study up about the Pineal Gland and its known AND unknown powers … If it is ever “shaken” it can awaken incredible mental abilities (they say) … For example, MANY Egyptian tombs show people holding staves with … pineapples on top of them. NO PINEAPPLES ever grew in Egypt … The Pineal gland is called that because it is shaped like a pineapple … It is also called the “third eye” of our minds… If you were to point RIGHT BETWEEN your eyes, you would be looking at it … it sits at the base of the brain on top of the spinal column.

Awesome reading if you wish to study about it sometime … My TBI was a frontal lobe injury and it shook my skull badly …

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Do I fear death? No. None of us are gonna get out of this life alive. It’s coming for us all. But all of this does make us hyper aware of our own mortality. It’s interesting you mentioning dreams as I too have had a few come true. I had one dream of winning Lotto, but that one hasn’t come true :smile: Damn it.

There has ALWAYS been a debate about my situation with the medicos and every dr/specialist/professor has had a differing opinion. It’s been a bit of a ‘which came first, the chicken or the egg?’ Was my issue caused by the MVA or was my issue always there? And to be honest it’s really a flip of the coin, it could be either. And the answer doesn’t really matter anyway, the result has been the same.

I developed a growth, a tumour in the subarachnoid space (right beside the pineal gland). Initially, the CSF could still flow naturally but as the tumour grew it blocked the aqueduct, so the CSF couldn’t get out and I developed hydrocephalus, hence the shunt. Symptom wise, my symptoms are all over the place. Headaches, they are a daily thing. Some are bad, some are nasty and some are just unbelievable. But then I also have issues with my eyes, my temperature regulation, my balance, my peripheral nerves etc, etc, etc and this all varies everyday, I really can never tell what’s gonna happen today.

Because of all of this and the ‘Fun and games’ (NOT) I’ve had with the medicos, I’ve studied up on the brain extensively. Prior to my TPD diagnosis I worked as a teacher working with people with disabilities ie Intellectual, physical and brain injury clients. Teaching them independent living skills, in real basic terms, teaching them all the skills that most people take for granted. I’ve also had close, non biological, family members who have had neurological/neurosurgical issues. So my experiences in the neuro realm have been multifaceted, family, professional and personal which has given me a broad view of it all. One, I must admit, I’d much rather not have had but thems the realities of it all. My role here on Ben’s Friends has allowed me to utilize all of these skills/experiences and to be honest has saved what little sanity I have left :smile:

Merl

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This may be a bit lengthy. Thank you for your patience.

I can truly appreciate ALL you are doing for your group and your cause. When my accident happened, my mother was called and informed she needed to get to hospital asap because I was not going to live thru this. I was driving an 18 wheeler that blew a right front steer tire and went down an embankment north of Louisville, KY. My family is from Atlanta. I was NOT wearing my seatbelt and I was thrown thru the windshield headfirst. I CRUSHED the T1 and T2 vertebrae of my spine. I was in a wheelchair, then a body brace for 6 months (day and night). Finally able to walk again. I was in a coma for 2 days. When you look at an Xray of my spine, T1 and T2 look like bowties. (not square). They were crushed. Because my accident occured on a job, WC paid for it all. A chopper came out and landed on the interstate and carried me to the Univ of Louisville Medical Center. Experts say THOSE 5 or 10 minutes saved - - are what saved my life.

I went back to work 5 years after my injury thru the grace of God. I worked for a Billion Dollar a year corporation as an Ops Mgr. A company that YOU KNOW. JB HUNT. But it was while there that the stress of juggling a job caused me to have 3 seizures in 1 year. Under law that requires you to cease from driving for a year until an MD signs paperwork stating you are safe to drive. Not easy.

While I can deeply appreciate your concerns for privacy, MY JOB at JB Hunt involved me running criminal and medical background checks on ALL new hires. I worked in Safety. I was a licensed random drug tester. Having said that, I ran approx 200 background checks each week thru USIS. Google up USIS when you get a moment and you will see what it is. My job involved transparency - as well as Identity Protection. It is my expertise. Throughout my 25 year transportation management career, I ran over 10,000 commercial drivers licenses, S.S. cards, birth certificates, passports, etc. etc. The best defense in today’s world - is avoiding dangerous arenas on the web. My personal and private email address is on Protonmail.com. PM is an encrypted email provider. It is listed as the #1 most secure email choice according to most computer entities. My identity and my personal security are the least of my concerns. I have never smoked, never taken drugs, have never had a Facebook account (and do not intend to). Privacy and security - IS MY LIFE.

I have a copyrighted book in the Library of Congress. But due to my head injury, I was unable to get the funds to have it published. I have travelled the country speaking at hospitals and rehab centers. I stumbled onto your site recently and felt I could help some people answer some lingering worries or concerns. I am like you - I have PLENTY OF TIME on my hands. I will NEVER have to work again - thank God for that. What I wish to do - is help people BETTER understand what the rest of their life is going to be like.

I am not so sure how devastating your injury was - but I did not EVEN KNOW my wife when she came to see me in the hospital. When I got released after a few weeks, I went home with the first person that doctors said I recognized - - my mom. My wife filed for divorce weeks later. I have 2 sons I do not know either. My head injury ERASED about a 6 year portion of my life. It is gone. Zip. Nada. Nothing. Everything Erased.

I am a DEEPLY religious man and I was anointed by a minister the same day of my accident. I feel that played a huge part in my successful recovery. I have escaped death 5 times since my accident and the only explanation I can give is the hand of God …

When I told you about the dreams and vision I have had - here are a few. I have predicted EXACTLY what play was going to be made in NFL games several times in front of people. I was not intentionally predicting it - I simply said “Brady is going to throw a pass to Wilson out in the flank and he will score”. And BOOM - it happened. Exactly. After my accident, someone knocked on my mom’s door. Without even seeing who it was, my mother asked “I wonder who could be here?”. I said it was Meredith - she is here to tell me she loves me. I had not seen Meredith in over 7 years and we NEVER had a relationship at all. Ever. Meredith knew I was in the middle of a divorce. Guess what? Meredith is my Step Sister … we are not blood relatives. But I KNEW it was her at the door and I KNEW why she was there. She asked my mother to ask me to come outside. Then she told me she had loved me forever. …

Do I ALWAYS know what is going to happen? Heck no. But I HAVE STUDIED damages to the Pineal Gland and what they can do to the mind. I encourage you to study this as well. You may be shocked at what you find - - from DOCTORS …

My last seizure occurred in Atlanta, GA. If you are aware of I285 around Atlanta - you will know it is 4 lanes each way. I had a seizure while driving and went across my four lanes … I went thru the median and across the OTHER FOUR LANES and down an embankment. A citizen stopped and came down and busted out my driver’s side window and pulled me out. I was still in seizure status holding the steering wheel. Do I remember any of this? Absolutely not. These are just facts I have been told. BTW - this accident happened just after 5pm when I got off work at JB Hunt on the south side of Atlanta. Do you understand the odds of driving across ALL EIGHT LANES of I285 and NOT KILLING YOURSELF or hitting anyone? A miracle. True miracle. The lanes are PACKED with cars.

I must admit. I am not part of “today’s culture”. I am an honest Christian man. I have given MANY lectures at MANY hospitals and rehab facilities - All over America. I came here to offer an ear and a shoulder to anyone I can help via my experience and successes with dealing with TBI AS WELL as having a spinal cord injury. I should not be walking. I should not be talking. I should not be alive. But I am. I wonder what God would have me do …

Have you ever asked yourself - - What would God have YOU do ?

Thank you for your patience and the last thing I wish to do is to step into someone’s arena. I apologize for anyone I offended or worried. I have been asked to visit Siskin Hospital for years in Chattanooga, TN 3 days a week to visit therapy patients to offer positive feedback. Google up " Siskin Hospital " to see this fine facility … I think the difference in my perception of your website was that it was “genuine and/or real”. I hope it is. I have spent a lot of time helping people HANDS ON with their TBI’s … and I can verify that.

It was my hope to help genuine people on here as well … May God bless you. Please do not be offended for my zest and hopefulness to bring something to your site. I do not feel comfortable now with the seriousness of it … I am an honest and open person and due to MY HEAD INJURY … THAT is the only way I can live now. Living the truth. I cannot “pretend” or hide things. I will eventually mess up due to my honesty and frankness. I wish you all the best !

Trey2day

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Hey Trey,
Lengthy is fine by me, some of my posts are almost like a thesis paper :smile: so don’t be too worried about the length. I’m in Australia, so I must admit I had no idea who JB Hunt were (Thanks to Google, I do now). As for the ‘I285 around Atlanta’ I have no clue, it’s only because Atlanta had the Olympics years ago that I even have any idea where Georgia actually is :smile: (is that showing my ignorance too much)

The security stuff here is to try and keep our members safe, I mean, let’s face it, we’re often talking about some extremely personal stuff here. As I mentioned, I had dealings with an insurance company and it was NOT nice. They were looking for any and every way of getting out of paying my claim, odd vehicles outside my home, investigators following me etc and I’m sure internet searches would have been part of their investigations . It got real nasty. That’s one of the reasons I got the lawyers involved. The insurer certainly didn’t like that. By using a pseudonym, neither ‘Joe Public’ (or any insurer) can easily identify me or find info I’d much rather they didn’t have. I also do searches of myself, just to see what is floating around on the WWW.
P.S. Just so you know, I changed your name at the end of your last post to hide your identity.

As for that ‘God’ bloke. As I said to someone the other day ‘I’m a bit like the dyslexic agnostic I don’t believe there is a dog’ :smile:. Don’t get me wrong here, I was brought up in a STRONG catholic family, being sent to religious schools and all the ‘fun’(not) that involves. It was the hypocrisy behind it all that drove me away. Nahh, not for me but each to their own. We do have a prayer and healing or a spiritual section for such conversations as for some people the whole god and bible thing is not what they want to hear on a health site. Some do and that’s OK too. https://www.traumaticbraininjurysupport.org/c/Spiritual-topics/19

" my perception of your website was that it was “genuine and/or real”. I hope it is"
Ohh it most certainly is genuine and real. Ben’s Friends has 50 different peer support rare conditions communities, so although you are a member of the TBI community, there are many more in our network. Everything from Acute Disseminated Encephalomyelitis (ADEM) through to Von Willebrand Disease (VWD). We have a team of us that help to monitor keep the communities active, civil and respectful. We have some ‘techy’ people to make sure it all runs smoothly. We have community moderators who look after their specific communities and because we are all patients, we have that ‘Hands on, real life’ experience that no textbook can ever give.
Ohh, yes, we are VERY real.

Merl from the Modsupport Team

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Hello Trey,

Seenie here from ModSupport. Nice to meet you! Merl, our moderator extraordinaire on this community is right: we’re a bigger organization than you might think. If you go to BensFriends.org and then click on the Community List tab, you’ll get a feeling for the expanse of our network. That said, there are quite a few commonalities amongst people with rare diseases, the most pervasive being a feeling of loneliness and abandonment. Nobody feels alone with Ben’s Friends: we’re all in this together, and although we may never have met in person, we “get it”. All of it.

Yes, we certainly are genuine and real, as are you! And we’re glad you’re here.

Seenie