Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 07-29-2010, 09:08 PM #1
Mark in Idaho Mark in Idaho is offline
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Default Dr Glen Johnson's TBI Survival Guide update

Dr Glen Johnson's TBI Survival Guide. Dr Johnson is a great advocate for the brain injured and support us by making his TBI Guide available for free. Be respectful of his contributions by giving him credit for his great work if you provide a copy of the TBI GUide to someone else. If you have benefited from his TBI Guide, he accepts donations to support his web site costs. A $5.00 donation is a great thank you.

Anybody who wants a copy of the TBI Survival Guide can PM me with your email address and I will send you a copy of the doc file exactly as Dr Johnson has posted it for download. You will notice that it does not carry any copyright terms. This is as he made it available.

If you try to post your email address in a thread, the address will likely be deleted. If you send it to me in a Private Message, I can then send you the doc file by email.

Those of you who are newbies will not have access to the PM function right away. You can see the TBI Survival Guide at www.tbiguide.com
You can read it online and copy and paste individual chapters into Word for printing.

I will try notifying Dr Johnson of the problem with his download site and maybe it can be corrected.
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Last edited by DocJohn; 08-03-2010 at 06:09 AM. Reason: Removed copyright argument
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Old 07-30-2010, 08:52 PM #2
Mark in Idaho Mark in Idaho is offline
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Dr Johnson has been quick to respond to my note of the bad download link. He is planning an update in the future and will attempt to get the download link fixed at that time.
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Old 09-23-2021, 03:31 PM #3
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Hi Mark. I'm new to this site, and I haven't had a chance to properly introduce myself yet. Long story short, I was in a motorboat accident when I was 19, and various issues have cropped up for me over the last 15 years (I'm now 34 if I remember correctly ). I am scheduled to do my first neuropsych evaluation next month, and I was feeling very distraught over the particular office that I was referred to by my regular physician . The receptionist was short/insensitive with me, the practice website did not impress, and I was getting the newbie doctor (no offense to younger docs but it's going to cost me a lot out of pocket and I want the most experienced clinician available).

I live in the middle of nowhere, northern Michigan. Traverse City is where I need to go for specialists, and that is where Dr. Glen Johnson practices! I did see Dr. Johnson's website last year when I was first made aware of neuropsychology, but never got around to scheduling my test until this year. Seeing your postings of "the TBI guide" along with some of your other comments on here helped me to decide to reschedule my testing with Dr. Johnson. His lovely receptionist is holding an appointment date for me, and my referral is being sent in the next couple of days. I'm feeling much more optimistic about getting seen/heard by someone who will fully understand! I'm not expecting much in terms of answers or solutions, but at this point in the game I know how every little bit helps. It's been a long journey for me. I'm tired.

So thanks, and I look forward to interacting more on this site. I'm really glad I discovered this forum!
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Old 09-24-2021, 01:03 AM #4
Mark in Idaho Mark in Idaho is offline
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You are so fortunate. It is rare to find a Neuro Psych who is not crammed full of biases against injured people.

Let us know how your experience goes.

I know a NP here in Idaho that is great.

The best NPs for TBI are usually affiliated with neuro rehabilitation hospitals.

What are you hoping to do with your report/results?
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Old 09-24-2021, 02:08 PM #5
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Quote:
Originally Posted by Mark in Idaho View Post
What are you hoping to do with your report/results?
That’s a good question! I’ve been working on my narrative/bullet points for what I need to communicate at intake, so this ties in well with that… thanks for the prompt.

I'm hoping to get:
1. clarification around my diagnoses
2. support for managing my symptoms - tailored to me and my life (and any specific weaknesses if they can be identified)
3. recommendations for both a therapist and a physiatrist who are familiar with the effects of TBI and can help me with PTSD, marijuana addiction*, and chronic neuropathic pain (possibly CPRS/RSD) from a soft tissue injury on my leg from the same accident as the TBI

*Yes THC gives me tremendous relief, and no it's not my preferred solution. I've been stuck in a cycle of quitting/relapsing for more than 12 years.
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Old 09-25-2021, 03:34 AM #6
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Please tell me about your possible CRPS. I know a man who fought its aggressive progressive form that advanced up his leg from his foot for years until he took a step that many considered drastic but changed his life for the better. His CRPS had destroyed his marriage and family relationships.

Living with CRPS pain makes the challenges of TBI much worse. Stress magnifies TBI symptoms.

I urge you to be brief with your narrative. Let Dr Johnson diagnose you with minimal subjective complaints unless he specifically asks. Maybe a few " I used to be able to do 'xyz' but I have struggled to do xyz since my injury. I hope to understand this struggle and maybe learn some work-arounds. " "I get stuck in self-doubt when I can't do things that I think I should be able to do." Don't sound whiny. Sound like you want to get better.

For me, the NPA report just told me my struggles were real. I was not crazy or deluding myself. I've had 2 since my first NPA in 2002.
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Old 09-26-2021, 12:40 PM #7
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I will try to keep it brief with the doctor at intake. I just know that I will turn into a puddle of tears if I do not take the time to put the right words down on paper ahead of time. It takes me a lot of time and energy to get my thoughts in order, but it really seems to be worth it.

Uncontrollable crying is my biggest problem in life at this point, and the strange sensation in my leg is one of the main triggers. It's very hard to describe. I can tell you that I did not used to be the crying type. A few years ago, a light touch to my leg from a massage therapist made me burst into tears completely out of the blue. That's what actually confirmed for me that my emotional breakdowns that I'd been having, which I thought were due to regular stress, were indeed connected to the motorboat accident. My hypersensitivity has continued to get more frequent and more intense. I feel silly for bringing up my injuries from so long ago, but I'm getting more confident that this is what needs to be addressed. And the injury on my leg was the least severe - no broken bones or even broken skin. It was just a giant hematoma. Now it's like a touchstone that reminds me of what happened, of which I remember nothing. I just know the story that's been told to me.

I was in a collision of two motor boats, at night, after a party, on a lake, in El Salvador. One person died. My head got caught in the propeller of the boat that hit us. When I reread the medical report from my surgeon, it says that I came in with a broken jaw and teeth, lacerations on my head, face, and neck, 2nd & 3rd degree burns on my chest; I had nearly drowned, lost a ton of blood, and convulsed multiple times. And I came in complaining of pain in my leg! So it must have been pretty significant impact that I absorbed in that area, and it seems to be the seat of my emotional pain. Like ground zero for my traumatic experience. I have no memory of the accident and I don't even know what object impacted my leg, but I assume it was the side of the boat.

I lost sensation in part of my face, and I have discomfort in the scar tissue around my jaw. But the area in my leg is like a different animal. It's not excruciating pain at all, but it is uncomfortable, and it's constant. I can feel it at all times. It feels more intense when I'm stressed. Deep in my flesh, it feels tender, like an open wound. That feels like it's wrapped in hard, calcified scar tissue. The sensation on my skin is a tingly feeling. I'm not sure if there's any swelling, but it looks like a dent in my flesh, and now thanks to gravity and time it's more lumpy and saggy. I rarely wear shorts or skirts, and usually wear jeans or leggings because the light compression feels a little better than air. I have had a very light burning sensation in my skin on my other leg, like a mirror image. I don't have any mobility issues. I can't say I have noticed any issues with temperature.

That's all I've got for now. Thank you for your concern.
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Old 09-26-2021, 12:57 PM #8
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We also have an RSD/CRPS forum that might be of interest ..
https://www.neurotalk.org/reflex-sym...rsd-and-crps-/
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Old 09-26-2021, 07:12 PM #9
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Thanks Jomar. I saw that. I don’t have an official diagnosis for CRPS at this point, so I’m hesitant to get too invested in exploring that part of the forum right now. Too many intense emotions at the moment. Waiting to get through my NP testing first.
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Old 09-26-2021, 08:25 PM #10
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From my past reading about rsd, the sooner you can try blocks the better.Of course finding a good Dr is important too.
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