[Mark in Idaho]

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.

[Mark in Idaho]

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.

[HitByABoat]

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!

[Mark in Idaho]

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?

[HitByABoat]

Originally Posted by Mark in Idaho

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.

[Mark in Idaho]

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.