Young Adults with TBI Support Group

060811 minutes-1

here are the minutes from Wednesdays meeting : 051111 minutes

and since it’s referenced to, here’s a link to the nutrition document

4 13 11 minutes

Here are the minutes from this month’s meeting!

3/9/11                                    Support Group

Silas gave a couple announcements to start the evening:

• Tonight will be about goal setting   —   Will be small groups and then whole group.
• New page on the blog with links to newsletters and websites
• TBI Conference is on 4/28 and 29 of this year

Neat conference with different tracts: some for TBIs, caregivers, kids, and some                                                                                           professionals

There is some scholarship help available, some via the support group

• The contact list will be put out for people to contact each other for outside the Support Group                                     communication and connections

Carpooling is also a possibility

• The Yoga group on Fridays from 4-5 at The Good Shepherd is specifically for TBIs and those associated with them, but not just anyone off the street.

There is a link on the blog

Then the Confidentiality Agreement and Ground Rules were read aloud to remind all of us to be sure we treat each other fairly and appropriately during and outside the support group.

The sign in-sheet was passed around to be sure we all signed in. The sign –in helps justify the need, and therefore the funding, for the support group.

The group then decided to stay as a whole group for the night’s discussion. While goal setting was never addressed, a variety of useful information was then shared by a variety of participants.

• The Department of Vocational Rehabilitation (DVR)

80% federally funded,

Help to place TBIs in jobs and help them be successful in those jobs

Counseling regarding how many hours can be worked and how much money can be earned to                                                      maintain Social Security Disability

• There is a link on the blog to Social Security’s policies and procedures, including impairment                                     related work expenses, modifications /accommodations at a job
• Harborview also has a program for people who have never held a job to learn how to be                                                       successful at a job and how to live on their own
• Benefits Specialists can also help navigate Social Security
• Our next Support Group meeting will be about Social Security. As there is a forum afterwards,                                     we will focus on what outcomes/information we’d like from the presentation, and what                                     focused questions we’ll need to ask to focus that forum.

Each group member was asked if they were comfortable to share anything with the group they’d feel comfortable sharing.

One member shared that she had finally graduated high school.

Another shared she has received accommodations for taking the SAT.

Silas shared he goal has been to start a for-profit whose policy requires a portion of those profits go to                                                       certain non-profits.

One member shared the title of a book for those interested: Head Injury Recovery in Real Life. And that                                                       through Facebook had connected with a friend from high school who has also survived a TBI.

A couple of the moms/caregivers shared parts of their stories and frustrations in their journey

Two members are new to the group.

Group was surveyed to see if there was interest in a concurrent caregiver support group. Those who spoke felt it was better for the group to stay together as a whole than to split up.

There was also discussion of organizing a game night so we might gather socially, instead of just as a therapy group.

Muchimos Gracias a Senorita Ali for writing these minutes!

YAWTBI MEETING MINUTES 12^th January 2011

 

6pm: Good to see new faces in the room J

• Silas announced:

o      NW Hospital is offering a journaling class/workshop on wellness, held by Joan Jaeger for $100 – please see/contact Silas for more info or to get a flyer

o      TBI Model Sys Forum: depression 1/19 held on the 9^th floor

§       Silas available before forum if people want to brainstorm questions or talk for a bit

§       Can have parking reimbursed for attending forum

• HS trauma mama’s dinner is meeting at Agua Verde before the forum 5pm: will have one table for adults/caregivers and one table for young adults and mentors
• Silas and Desiree (HS) proposed different options for trying to help coordinate trauma mama dinners and the YAWTBI meetings – thoughts were fairly unanimous to leave as it is, so that people can attend both functions. Please check the HS calendar for an update of when caregiver dinners will be held.

 

• Mara was our presenter for the meeting, she is an SLP working at UW and her experience is in cognitive therapy rehabilitation –she led our discussion:

o      ? What is time Management?

§       Planning what you will do at specific times of day

§       Responsibility

§       Prioritizing and meeting deadlines

§       Making to do lists

§       Ask/understanding of tasks and their expectations

§       Staying focused: being able to keep your attention concentrated; stay interested in what you are doing; how to ignore/handle distractions?

§       Continuously practice routines, repetition is the best way to have things stick

§       Advocate for yourself: find the best time of day for you to complete different tasks, and organize your routine accordingly

§       Memory: forgetting what you need to do – different ways to help you remember? Write down on sticky-notes and leave out to see; if trying to remember to take something with you, put it in an unusual place where you won’t miss seeing it

§       Distraction and memory have a strong correlation; the more distracted you are the less likely you are going to be able to remember what is needed to do. Finding ways to reduce your distractions increasing your ability to remember what you are doing and need to do.

§       Planning an accurate amount of time for yourself to complete an activity and building that time frame into your schedule

§       There is a big challenge in finding the right system for YOU:

• How to label things?
• How to remember to check/ways of reminding yourself to use systems/planners
• Alternative to using a planner: phone reminders?

 

• ? What can you do to improve time Mgmt, planning, remembering, staying-focused?

o      Have a relative/mentor/caregiver: coach, cue you to reference your calendar/planner/reminder system

o      Program yourself to prioritize most important first

 

• ? How do you stay motivated?

o      Have a vested interest in what you are doing

§       Enough so that you choose to follow through on what is needed to be done to attain your goals

• Excitement?
• Future plans?
• Make an association for yourself
• Emotional attachment: easier to remember
• ID goals
• Assign meaning to the smaller/mundane tasks to help remember to complete them = each little step you take and daily task you complete helps to attain that larger goal you have for yourself

 

• ? How can you help yourself remember to pay attention?

o      Set timer when cooking

o      Stay-focused

o      Turn off/silence phone

o      Keep pretty girls away

o      Medicine (ridalin-ADD)

o      Reduce external white noise; loud coffee shops; radio, tv, etc.

o      Put things in different locations to jog memory

o      Recognize when your own mind wanders, and leaves the present conversation or task at hand

o      If in a conversation, you can ask someone to repeat the last sentence/phrase to keep you on track if you get distracted

o      For school: print notes ahead of time to be able to more easily follow a lecture; only note take on what is said; doodle if that helps you focus

o      Sit at the front of the room if you are in a large group setting

o      Finding your best style to stay focused may be different than what you were used to pre-injury; go with what fits now

o      Have a reward system to stay on track

o      Keep your plans manageable

o      Keep a good balance of work/fun = healthy lifestyle

 

• Challenges in figuring out parent/child dynamic

o      Figure out who you are; not who you were

 

• Temptation dynamic: how to deal with the temptations that you lead you to distraction
• 6:55pm break into small groups for individual topic discussions
• 7:30pm reconvene and share with group

o      Suggested that we talk about all different types of alternative therapies for an entire meeting

o      Look at future as: having the best possible recovery/healing process you can as opposed to getting back to the “old you.”

o      Strive to have a better day tomorrow than you did today J

o      Help youth find meaning and passion to give reason their life – striving to find an individual path to follow

o      Ways to improve anxiety/depression:

§       Deep-breathing

§       Talk anxiety through

§       Yoga/meditation

§       Analyze: is this a big deal/small deal

§       Count your blessings

§       Have alternative plans

§       Be a good listener

§       Keepy busy J

§       Journaling/write down your feelings

o      Relief/hate relationship with time mgmt:

§       It is mostly a negative relationship

§       Feelings of frustration and guilt are often associated: especially when you are already feeling down, and then you do not make a deadline because you are not feeling up to completing task.

• To get out of a rut:

o      Have friends present in your day that you trust

o      Exercise

o      Create realistic goals for yourself; modify if a day is going horribly wrong

o      Have help getting out of the house

o      Feelings of depression takes away the will to do what you said you would do – find ways to help yourself not end up in a depressed state. Or have help getting out of the depressed state.

§       Getting something accomplished and checked off your list is often it’s own reward

§       Completion = feelings of pleasure

 

December 8th, 2010 Meeting Minutes
Young Adults with TBI Support Group
yawtbi.wordpress.com

This month we had a full agenda.  We started by going through ground rules and our confidentiality agreement.  Next Silas reminded all of us about the super awesome TBI document resource that is our blog.  He said there’s a bunch of really neat stuff from the UW TBI Model System study on there in the “downloadable documents” section.  Check it out.  Then we got some updates about the following:
TBI clubhouse potluck coming up on December 15th
Headstrong holiday party coming up on December 18th
TBI clubhouse making legislative appearance on December 10th

Next Silas presented a fantastic document that he generated for a panel he sat on at the TBI conference last year about reconnecting with your community.  It’s also available on the blog for review.

We then broke into 4 small groups and talked about the following:
Group 1 – talked about positives from their week and went into more depth about each person’s           current situation.  Also discussed games and technology that they’re into right now.  And had the final statement of “live life, have fun, be careful”.
Group 2 – talked about loneliness and how it’s good to start interacting with small groups and    practice outings and then report back to your family members how it went well to help     build their confidence.
Groups 3 and 4 – talked about time management and how it really does matter so we need to find         the motivation to do it one way or another.  Also discussed resources available and how       best to use them and figured out that the best way to start working on time management is     to break tasks up and just do one thing at a time to try to avoid getting overwhelmed.

This month we had a good question and answer time with a rehab doctor as follows:

Question and Answer with Dr. Shenouda

Q: What would a “standard” course of therapy / care be at 4 months post injury?
A: Treatment plans are very individual. The best course of action is to get individual direction from your doctor.

Q: What is the difference between a coma and a medically induced coma?
A: One is an induced state that doctors are trying to keep you in and the other is a naturally occurring state that doctors are trying to get you out of.

Q: What is the cause of hemiparesis?
A: Hemiparesis is directly from a brain injury.

Q: How does someone who is mentally ill do stuff right?
A: Sometimes previously known skills come through.

Q: What is on the horizon with rehabilitation? Specifically physical rehab.
A: Lots is on the horizon. It is both an exciting and frustrating time. It is exciting because brain injury is getting much more media exposure due to high-profile war injuries and sports injuries. Brain injury is becoming less of a medical term and more commonplace in the household. It is a frustrating time because it is so difficult to study cognition. Many of the studies out there are flawed because of the multi-faceted nature of cognition. It is really hard to make a well designed study surrounding cognition.

Some of the new technologies on the horizon for rehab are stem cells and robotics.

Q: Why do I still feel “normal” even after my brain injury? How can I get back to “normal”?
A: You still “feel” normal because your brain is recovering. How you can get back to “normal” is very individualized for just you. Definitely something to talk about with your doctor.

Q: How do you know when your brain is healed?
A: We don’t currently know how to know.

Q: Can a brain scan tell if your brain is healed?
A: CT scans and MRI scans are not useful for this currently. Scans show structure and not function.

Q: What causes the difference between hemiparesis and hemiplegia?
A: Severity of injury sustained.

Q: Are there things that we can do to help / harm neuroplasticity?
A: Depends on the phase of recovery you’re in. You can certainly help by limiting cognitively sedating medications, finding the right balance for you between rest and stimulation, having good nutrition, and limiting alcohol.

Q: What is the difference between a TBI and a concussion?
A: A concussion is a mild TBI.

Then we broke into 3 smaller groups and talked. Some groups talked about adaption strategies post-TBI and some talked about situations with non-injured people and how to deal with them. Lots of good discussion took place.

The idea was brought up of making a group contact list. No comments were made on this idea.
We brainstormed about future forum ideas.
There was also the opportunity brought up about taking part in the CAST study. Details are available on the blog. Contact Silas if you’d like to participate.