The effects of brain injury vary and can be puzzling. I’ve gathered pieces of information from this month’s support groups and therapy services offered in the Salt Lake Valley. In case you missed last months meeting’s, I’ve attached notes on the information covered. Please don’t forget to check out the upcoming events and mark your calendar. Also included are links to useful websites. Putting the puzzle together is easier with the help of others. If you have an activity, announcements or other information you’d like to share in this newsletter, please email Barbara@UnitingCaregivers.com.
FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY
May 9, 2017– Brain Injury Alliance Support Group for Adults, 6-8 p.m. Meets every 2nd Tuesday monthly at Sanderson Community Deaf Center, 5709 South 1500 West, SLC, UT 84123. This is a social group where dinner is enjoyed together and then games played or crafts made.
This month is the annual Kentucky Derby Races and I’m betting it will be a lot of fun! All caregivers and survivors are welcome. For more information call: Jennifer (801) 468-0027 or Beth (801) 585-5511.
May 18, 2017 – Caregivers and Survivors Education Group will meet together this month, 7-8 p.m. Meets every 3rd Thursday monthly at Intermountain Medical Center (IMC) 5171 S., Cottonwood St., Bldg. 1 Floor 7 Murray, UT 84107
Dr. Matt Townsend will be speaking on Improving Relationships. He is the founder and president of Townsend Relationship Center, a relationship skills-building organization. Through entertainment and humor, Matt teaches life-changing skills that will help improve our most important relationships.
May 23, 2017 – University of Utah Brain Injury Support Group 7 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center (801) 581-2221 1138 E. Wilmington Avenue.
FREE WEEKLY GROUPS
INTERMOUNTAIN HEALTH CARE NEURO THERAPY SERVICES
Aphasia Talking Practice Group – Meets every Tuesday Noon-1 p.m. 5770 South 250 East #G50
Meditation Group – Meets every Wednesday 3 p.m. 5770 South 250 East Cafeteria Conference Room
Cognitive Skills Group – Meets every Thursday Noon-1 p.m. 5770 South 250 East #G50
Contact: Dr. Russo at firstname.lastname@example.org
Epilepsy Groups for those affected by seizures.
Together we share coping strategies, provide encouragement, comfort and advice from people with common experiences. For more information contact Margo at (801)455-6089 or Utah@efa.org
May 5, 2017 – Epilepsy Group for Parents 7:00 p.m.-8:15 p.m. Meets every 1st Thursday of the month Riverton Library Auditorium 12877 S. 1830 W., Riverton, UT.
May 11, 2017 – Epilepsy Group for All Effected by Seizures 7:00 – 8:30 p.m. Meets every 2nd Thursday of the month Intermountain Medical Center (IMC) 5171 S. Cottonwood St., Bldg. 1, Ninth Floor, Murray, UT. This month Cynthia Peterson, PT will share insights and exercises. Her presentation is Breathe, Sleep, & Kiss Your Way to Better Health & a Happier Brain. Come to learn and bring your questionsI
May 17, 2017 – Epilepsy Group for All Effected by Seizures 6:30 – 8:30 p.m. Meets every 3rd Wednesday of the month SLC Main Library 200 E. 400 S., SLC, UT (2nd floor conference room).
May 24, 2017 – Epilepsy Group for Teens 7 p.m. Will meet the 4th Wednesday monthly at the West Jordan Library, 8030 So. 1825 W., West Jordan, UT. There will be two teachers overseeing this group. Come to enjoy an activity and meet other teens with epilepsy.
May 25, 2017 – Epilepsy Group for Women Only 7:00 – 8:15 p.m. Meets every 4th Thursday of the month SLC Main Library 200 E. 400 S. (3rd floor conference room)
THE BRAIN INJURY ALLIANCE SUPPORT GROUP for ADULTS MEETING NOTES
Tuesday, April 11, 2017
Sanderson Community Deaf Center located 5709 South 1500 West, Murray, UT 84107
After a variety of yummy pizzas to choose from, we played Easter Bingo and then regular Bingo. The winners were offered an assortment of Spring prizes to choose from. Thank you Jennifer Gee and Beth Cardell for doing a great job directing this group. For more information call Jennifer (801) 468-0027 or Beth (801) 585-5511.
CAREGIVERS EDUCATION MEETING NOTES
Thursday, April 20, 2017
Intermountain Medical Center 5171 S, Cottonwood St., Bldg. 1 Floor 7 Murray, UT 84107
Lauri Schoenfeld gave an excellent presentation on embracing fear to move forward. She addressed what holds us back and how to overcome it so we can be our best selves. She was positive, fun and energetic. Her four tips included:
- Recognize your fear and call out to it. Ask yourself:
- What happened to create this fear?
- How is it holding you back?
2. Face your fears. You have to surrender them and become willing to create a different reality. Write down your truths. For example, mine are being a child abuse survivor, scoliosis survivor, a writer, speaker and a mom. Face your fears by doing the following:
- If you’re afraid of speaking, go speak.
- Encourage yourself to do one scary thing each day.
- Courage, confidence and even fearlessness are the result of facing, embracing and dancing with fear.
3. Learn to love yourself and appreciate all that you are. Six suggestions on how to do this are:
- Motivational videos
- Gratitude journal
- Positive affirmations
- Take time out to breathe
- Read uplifting books
- Get an accountability/support buddy
- Surround yourself with people who can relate to you and the things you’re going through
4. Be present and realize that this is your life. Why are you waiting? Why not now?
To read the presentation in full see: https://unitingcaregivers.wordpress.com/2017/05/09/embrace-your-fears/
Notes from Greg Nordfelt, MBA & TBI Survivor
SURVIVORS EDUCATION MEETING NOTES
Thursday, April 20, 2017
Intermountain Medical Center 5171 S, Cottonwood St., Bldg. 1
Dr. Cara Reddy, Directory of Neuro Rehab, IMC, gave an informative presentation on brain injury and fatigue.
Dr. Reddy is from Pittsburg where she spent 15 years in physical medicine. She and her husband decided to move west to advance their careers. They have two children, 10 and 15 years old. Dr. Reddy follows the TBI Model System, national leaders in TBI research and patient care.
After a TBI (Traumatic Brain Injury), survivors usually have more than one type of fatigue:
- Physical – I’m tired and need to rest.
- Psychological – I just can’t get motivated to do anything and I’m depressed.
- Mental – After a while I just can’t concentrate anymore. It’s hard to stay focused. My mind goes blank.
Dr. Reddy indicated that most of her TBI patients have fatigue. Their mornings are easier to handle than late afternoons. Fatigue usually hits hard in the evenings. She said its not like having a broken leg that heals and then you’re better. People say, “You look better so why are you so tired?” Patients say to themselves, “I look okay. Shouldn’t I be okay?”
Fatigue affects brain injury patients differently. For example:
- some can’t fall asleep
- some sleep all the time
- some get over stimulated doing taxes
- some get over stimulated at the grocery store
- some get over stimulated at family parties
- some are anxious
TBI brains don’t run as efficiently as they used to. On good days brain filters run really well. On bad days they don’t and that’s when the brain injury impact becomes extremely evident. Everything is all of a sudden amplified and loud! Conversations from others appear to be YELLING, everything is NOISY, and sounds coming from the street, hallways, offices and diners are CONFUSING! To top it off, what’s left of our working brain muscles get tired easily.
Dr. Reddy said when your brain is fatigued, its your brain’s way of saying “you’ve had enough”. Stop, you’ve had enough and its time for a brain rest.
She advised, “Don’t push your way through it. You’ll have to decide overtime what things are worth paying the price for and what aren’t. But, you will pay the price later. Sometimes it will take several days or weeks to recover.”
Fatigue is the feeling of exhaustion, tiredness, weariness or lack of energy. The most important routine in getting a good nights rest is picking a consistent time to wake up in the morning. She indicated being consistent in waking up and choosing a relaxing hour routine before bedtime will enhance sleep. Sleeping soundly will fight the fatigue battle. Dr. Reddy said she sleeps 9 hours a night to build up energy stores.
Don’t use TV, cell phones, iPads and other electronics 1 hour before going to bed. Melatonin is the natural chemical the brain uses to detect when its time to go to sleep and wake up. When we use electronics, the brain detects that its not time to go to sleep.
Dr. Reddy indicated, “I’m not a fan of sleep medication.” She reiterated sleep drugs should not be used unless they are absolutely necessary. She is okay with melatonin supplements occasionally until you get into a pattern when you don’t need them anymore. If it takes more than a half hour to fall asleep, get out of bed. Bed should be a place for sleeping.
Use mindfulness and meditation if you are having problems sleeping. Train yourself to sleep. Its okay to read before sleeping if its relaxing and not stimulating. If you need naps during the day, take them 30-40 minutes at a time.
She shared two handouts, Fatigue and Traumatic Brain Injury plus Traumatic Brain Injury and Sleep, by BrianGreenwald, MD and Kathleen Bell, MD and Model Systems Knowledge Translation Center. See http://depts.washington.edu/tbicomic
Thank you, Greg, for sharing your notes!
BIAU 5K Run, Walk & Roll
Date: May 20, 2017
Time: 8 am
Place: Liberty Park – 650 E. 1300 S., Salt Lake City
http://www.caregiver.org (online webinars for caregivers)
http://www.tbicommunity.org (online educational programs)
http://www.braininjury.com (medical, legal, information resource)
http://www.abta.org (brain tumor education and information)
http://www.cdc.gov/ncipc/tbi (brain injury facts, programs, education)
http://www.ninds.nih.gov/Disorders/all-disorders (education for brain injury, stroke and other neurological disorders)
http://www.msktc.org/tbi (TBI Model Systems Knowledge Translation Center) national leaders in TBI research and patient care.
www.nationalmssociety.org/Resources-Support (resource for those with MS)
http://www.epilepsy.com/utah and/or http://www.epilepsy.com (seizure education and support by state or national)
https://biau.org (resource for those with brain injury)
http://www.brainline.org (preventing, treating and living with TBI)
Laptops http://www.brainline.org/abbymaslin (blog about loving and learning after TBI)
http://www.unitingcaregivers.wordpress.com (caregivers sharing stories, tips and thoughts)
http://www.facebook.com/UTteensupportgroup (social interaction and the exchange useful resources)
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