[Jamie]

Wishing there was more discussion on these platforms . . . thanks for your efforts. In case it helps someone . . . . my neuropsychologist had recommended I come up with a half sheet I could hand someone for appts or outings and it’s been helpful to me! Here’s what I came up with :

I realize you won’t be abel to tell by looking at me that I have a traumatic brain injury.

Everything takes more time and effort now. My brain takes longer to register things and respond, and gets mental traffic jams.

*Quick speech and movements,

*Multiple things happening at once i.e. more than one speaker at a time, multiple conversations at once

*multiple things going on visually–tvs, kids moving, etc.

*background noise or music

All these make it harder for me to process what you are saying to me.

*Standing or walking for prolonged periods

*Listening for sustained periods,

*Lifting and carrying

are all challenging for me

It helps when you converse:

-At a pace s l o w e r than you usually would

-With regular pauses of silence

allowing me to digest what you’re saying, especially in changing topics to give my brain time to catch up and clear the traffic. Thank you!

I’ve found this helpful and necessary to give and remind both friends and providers–even those who were treating me for some aspect of brain injury. And it helps me assert my needs more easily during an appt or conversation because the other person has a reference point already.

[Jamie]

I need to find and use my voice more in many areas and this was true before the brain injury, so in a way the injury is a blessing that’s been forcing me to learn this. I want to create a ready list of catch phrases and get better at recognizing and using those . . . I’m needing to learn how to pause or end a conversation when my neurofatigue flares and I need a break. I want to recognize and have different approaches for different scenarios since it’s different with friends who already know about my injury vs. someone I’ve just met. I also want to get better at keeping things concise.

For the first several years I was in so much pain and so fatigued I couldn’t distinguish what was adding to the pain/fatigue and then after being so isolated by it all sometimes I don’t want to speak up about needing quiet/a break because it cuts off connection again and feels rude. But I’m learning and hope to grow my skills here that I need to voice my needs and it doesn’t need to be rude or disconnecting, but can bring connection in compassion and helps me take care of myself as I continue to heal.

[Jamie]

Not so much a challenging question . . . but find it challenging how to respond when someone says –“you look great” and the implications that come with that

[Jamie]

Thank you!! It really helps my attention and memory during the seminar having the handouts more than 10min in advance!!

[Jamie]

I have enjoyed using Day One for journaling as it transcribes audio dictation when thoughts are coming more easily by speaking than by typing. I’ve also used audio recording app, called Voice Recorder, that lets me record dr. appts and title and organize them in folders–then when they say something important that I want to remember or review, I jot down the time stamp so I know where to go back to re-listen.

I also use Google Sheets for a master list of all my providers and their contact info and area of treatment; and a separate sheet for list of medications with dosing/time of day taken/ special instructions/prescriber. I have downloaded but not yet learned to use the BEST suite apps—before the website updated I thought I found a tutorial on each one, but can’t find that now and not sure if there is such a thing.

For calendars I still much prefer paper but have found it helpful to post a chart on the wall with 1/2hr time slots and have printed off different colors to represent different things (appts, errands, appt review or appt prep, meals, laundry, rest breaks, bills, social activities etc.) and having the color and being able to physically manipulate the color blocks to visualize each week helps me see when the week is missing something or overloaded and I need to ask for help or reschedule.

[Jamie]

I can relate. Even when taking in note sheets, I would get overwhelmed at Dr appts and easily thrown off by an unexpected question or reply. After one appointment, I typed my frustration and a message I wanted to get across & edited and took along next time (tho that was 6mo later).

Telling what appreciated . . . THEN that I am Frustrated how pain, anxiety, and issues in my mental processing made it hard to communicate with you and other providers for the help that I needed. Thankful to see this improving with time. & that I want you, Dr, to know that I am having and have had pain in x, y, and z places daily this whole time since the accident

That seemed to help some in communicating to the Dr but also for me to get to identify & express it