July 2017 Newsletter

July fireworksThe effects of brain injury vary and can be complex. Putting the puzzle together is easier with the help of others. For this reason I’ve gathered pieces of information on this month’s support groups and therapy services offered in the Salt Lake Valley. July starAlso included are notes from last months meeting’s in case you missed it and upcoming events to mark on your calendar. I have listed links to useful websites. If you have an activity, announcements or other information you’d like to share in this newsletter, please email Barbara@UnitingCaregivers.com.


reminder

FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

July 11, 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. All caregivers and survivors are welcome. For more information call: Jennifer (801) 386-2195 or Beth (801) 585-5511.

July 20, 2017 – Intermountain Healthcare Support Group meets every 3rd Thursday monthly usually at (IMC) 5171 S., Cottonwood St., Bldg. 1 Murray, UT 84107. This month the Caregivers and Survivors will combine for the annual summer picnic at 5:30-8 p.m. This year Wasatch Adaptive Sports is hosting at 9385 S. Snowbird Center Drive, Snowbird, UT 84092. There will be free tram rides and fishing! Intermountain will provide sandwiches, water, and paper goods. Please bring a side dish to share.

July ClipArt

July 27, 2017 – University of Utah Brain Injury Support Group 7 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. Call Ryan Pello for questions at (801) 581-2221


Please Note
FREE WEEKLY GROUPS

offered through

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 antonietta.russo@imail.org


Epilepsy

July heartEpilepsy 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

July 6, 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.

July 13, 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.

July 19, 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).

July balloons

July 26, 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.

July 27, 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)


Missed6

JUNE’S MEETING NOTES FOR:

THE BRAIN INJURY ALLIANCE SUPPORT GROUP for ADULTS, located at the Sanderson Community Deaf Center, 5709 South 1500 West, Murray, UT 84107. Met Tuesday, June 13, 2017, we had a luau. The Hawaiian feast was delicious as we enjoyed visiting about our individual summer plans. After dinner there were some activities available, while others choose to visit. 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.



SURVIVORS AND CAREGIVERS EDUCATION, located at Intermountain Medical Center 5171 S, Cottonwood St., Bldg. 1, Murray, UT  84107.

Caregivers met in the conference room on the 7th Floor and received tips from Kerrie Neu on how to replenish, recharge and renew. She shared with us what has worked for her and other caregivers she interviewed. The presentation was helpful in igniting ideas to meet our personal needs. For more details, click on the green links.

fun in sun

Survivors met in the conference room on the 9th Floor. Thanks Greg Nordfelt for sharing your notes.

The topic was Fun in the Sun, presented by Wasatch Adaptive Sports. Jake Thelen, Program Specialist, introduced their programs and said they focus on increasing independence and mobility in a social environment. They believe in the development of ability and active living through recreation for individuals with adaptive needs and their families. Through personalized assessments and instruction, along with adaptive equipment, they work together to achieve your goals and experience the outdoors without limitations.

Wasatch has three rehab physicians, three physical therapists and up to 30 event employees and therapists to assist in events as needed.  Jake said they keep participant to therapist levels as close to one to one as possible so that survivors are protected and have an absolutely wonderful experience with their activities.

Jake said they have never had a participant not be able to perform the activity they’ve been approved to participate in! Wasatch Adaptive Sports serves approximately 800 to 1,000 survivors per year.

Wasatch have a special relationship with Snowbird and their headquarters is located at 9385 S Snowbird Center Dr, Snowbird, Utah 84092. They have access to a fishing pond at Snowbird that is one of their most popular sites. They also provide activities during each week at Jordan River Parkway, Provo, Liberty Park and Sugarhouse Park.

Jake agreed to host our combined TBI Survivor & Caregiver Support Group annual summer picnic in July and have an activity at the headquarters at Snowbird Utah (instead of a local park in Salt Lake where or annual summer picnics are usually held). This was a very gracious offer and we were all very excited to change venues this year!

For more information see Wasatch website: wasatchadaptivesports.org


University of Utah Brain Injury Support Group, located at Sugarhouse Health Center 1138 E. Wilmington Avenue, SLC, UT 84106. They met Wednesday, June 27, 2017 at 7pm. Christina Derbidge, Ph.D gave the presentation on the grieving process. Unfortunately, I missed this group and hearing the advice, tips and support on this important subject. I wish I could have been there and able to share some notes.


Upcoming Events

BIAU Family & Professionals Annual Conference

Date: Friday, October 13, 2017

Time: 8am – 5pm

Place: Davis Conference Center, 1651 No. 700 W. Layton, UT 84041


Bright Ideas

                              HELPFUL WEBSITES:

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.

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)

Uniquely abledACTIVITIES TO DO WEBSITES:

https://store.usgs.gov/access-pass (free pass to National Parks & Federal Land Agency areas)

https://wildlife.utah.gov/watchable-wildlife-for-disabled.html (watchable wildlife for disabled persons)

http://slco.org/adaptive/plus-one-pass (Salt Lake County Disability Plus One Pass)

https://twilightinsight.wordpress.com/hobbies/hobbies-for-healing-the-brain/tbi-and-selecting-a-hobby (select a hobby – ideas especially for TBI survivors)

http://www.discovernac.org (National Ability Center)

http://wanderookie.com/blog/2015/07/27/12-beautiful-wheelchair-accessible-trails-in-utah
(wheelchair accessible trails in Utah)

https://www.visitutah.com/Media/Default/One%20Sheeters/Accessible_Utah_web.pdf (list of accessible resources)

wasatchadaptivesports.org (Wasatch Adaptive Sports)

http://www.discovernac.org (National Ability Center)

https://www.meetup.com (meet up groups)

Laptops

SHARING WEBSITES:

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)


Thank you for reading

Thank you for reading. I hope you found the information helpful and will follow this website via email to receive notifications of every new post. The “Follow” button is located at the beginning of the newsletter. However, if you want to subscribe only to a monthly newsletter, please email Barbara@UnitingCaregivers.com. I will add you to the newsletter email list and send you the link monthly.

If you wish to discontinue send a statement, “Unsubscribe to Newsletter” and I will remove your email address.

A Caregiver’s Button Box

Do you need ideas on how to replenish, recharge and renew as a caregiver? This month at our caregiver’s support group, Kerrie Neu  gave us lots of ideas. She agreed to let me share them here. With her 19 years of caregiving experience she discussed how to find joy among the challenges. Recognizing that every situation is different, these are some of the points she talked about.

noone@graniteschools.orgWritten by Kerrie Neu

“Just like my grandmother’s button box, we have to find the right button that fits the situation.  What may fit with one person may not fit another. Don’t feel guilty if you try something that other people like to do, but it just doesn’t bring you joy.  It’s okay.  I once attended a quilting class that many of my friends love.  I see their excitement and love their quilts.  However, the first month I went I stressed so much about trying to get my block ready for the next month, that I finally realized this was causing me more stress than joy.  For me, it was not the right button. Instead of acting like Cinderella’s wicked stepsisters who tried to make the glass slipper fit, we can simply find another shoe. We don’t have to fit the shoe in order to find joy and a happy ending, we can find the shoe that fits us and our situations.

escape​Let’s talk about some buttons then. First of all, Brenet Brown talks about buttons we have to be careful of. These are the easy buttons or escape buttons that we use to numb and not think about stress. Often they are self-destructive and don’t replenish us. We may think they momentarily help us forget or be happy, but in the end they usually don’t. For me, one of those escape buttons is TV binge watching. I find when I binge watch I ended up becoming cranky with my family. The TV shows themselves aren’t bad, but what I do with them does not nourish me. So I have to be careful of how often I use those easy buttons.

Neu CarsOn the flip side, Brenet Brown talks about reset buttons, or what I called recharge buttons. These are things that we can do to recharge and replenish ourselves. As caregivers these are critical in order to help us be able to continue to give to our loved ones. We talked about the lesson learned from Lightning McQueen in the movie Cars. When he chose to skip his pit stop in the race at the beginning of the movie, he suffered the consequence in the last lap when he blew two tires and ended up at the finish line with his tongue hanging out and his car in sad shape. He had to learn the lesson of working with others and taking time for maintenance. As caregivers, we must regularly take time to find joy and renew ourselves.

There are many ways to recharge. Sometimes we can do little things that only take moments like drinking a glass of water, breathing, watching wildlife, enjoying nature, watching a child, or reading a poem or inspiring quote. Other times we carve out a little more time to connect with a friend, take a walk, play a game, read a book, or create something. Periodically, it’s also good to plan for some extended time to get away and visit with family, attend a conference, or take a vacation. It’s important to find a balance in our life because we cannot give from an empty cup.  ​

Nue Bike TourOver the last 19 years, we have explored many things to see what brings us joy.  Some of our explorations were quite successful, like our bike trip to the Hiawatha Trail in Montana. Others were not so successful, like our bike tour of London.

Nue Bike Tour 1In each case, though, we learned something important and kept exploring. Never give up. Just this year we discovered that Laurent loves to listen to audio books and to do puzzles. Sometimes it takes a little thought, creativity, and extra planning to be able to do something with the one you’re giving care to, but in the end it is so worth it.

Neu Joy​Wes Stafford, former president and CEO of Compassion International said, ‘Joy is a decision, a really brave one, about how you are going to respond to life.’ Life’s hard. Choose joy anyway.”

My take away from this presentation is to be mindful of the escape, easy or numbing buttons which take me nowhere. Instead, look for the creative buttons that replenish, recharge and renew me as a caregiver. The buttons which work for me may be different from the buttons that work for you. What activities bring you joy? Writing is one of mine.

On Thursday, I will post more ideas Kerrie shared with us. You are bound to find some new buttons to try. 

To see the full presentation slides, click here.

To read more from Kerrie Neu see neusounds.com

 

 

June 2017 Newsletter

The effects of brain injury vary and can be complex. Putting the puzzle together is easier with the help of others. For this reason I’ve gathered pieces of information on this month’s support groups and therapy services offered in the Salt Lake Valley. I also included notes from last months meeting’s in case you missed it. Check out the upcoming events and mark your calendar for the BIAU Annual Conference. Also included are links to useful websites. If you have an activity, announcements or other information you’d like to share in this newsletter, please email Barbara@UnitingCaregivers.com.


reminder

FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

June 7, 2017 – Aphasia Support Group at 7:00 p.m. Meets the 1st Tuesday monthly at Brookdale, 76 South 500 East, SLC, UT. (Parking in the rear of the building.  Enter from 100 South.)

Topic: Vision Disorders and Treatment after a Stroke by Jennifer Thomas, OTR/L Occupational Therapist. For more information, please contact Christina Nessler (801) 582-1565, Extension 5379 or Kiera Berggren (801) 585-9717.

June 13, 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. All caregivers and survivors are welcome. For more information call: Jennifer (801) 386-2195 or Beth (801) 585-5511.

June 15, 2017 – Caregivers and Survivors Education Group will meet separetly this month, 7-8 p.m. Meets every 3rd Thursday monthly at Intermountain Medical Center (IMC) 5171 S., Cottonwood St., Bldg. 1 Murray, UT 84107.

noone@graniteschools.orgCaregivers Meet in the conference room on the 7th Floor. Topic: A Caregiver’s Button Box, Finding Ways to Recharge, Replenish and Refresh. Start thinking of the little things that bring you joy to be able to share with each other.

Our presenter, Kerrie Neu’s husband, Laurent, is a brain injury survivor from a motorcycle accident in 1998. Kerrie will share ideas on ways to recharge and nourish ourselves. Helpful insights come from nineteen years of experience as a caregiver and a mother of two children, who were small at the time of the accident. She works for Granite School District as the Dual Immersion Specialist, coordinating and coaching teachers in Spanish Immersion, and is working on her Master’s degree in Spanish Language Pedagogy (teaching methods).

fun in sun

Survivors Meet in the conference room on the 9th Floor.  Topic: Fun in the Sun, presented by National Ability Center. Come learn what adaptive sports are available.

June 27, 2017 – University of Utah Brain Injury Support Group 7 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. Call Ryan Pello for questions at (801) 581-2221


Please Note
june-clipartFREE WEEKLY GROUPS

offered through

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 antonietta.russo@imail.org


Epilepsy

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

June 1, 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.

June 8, 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.

June 21, 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).

June 22, 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)

newJune 28, 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.


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THE BRAIN INJURY ALLIANCE SUPPORT GROUP for ADULTS MEETING NOTES

Deaf CenterSanderson Community Deaf Center located 5709 South 1500 West, Murray, UT 84107

Tuesday, May 9, 2017, we had a great time at the horse races with paper money. 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.


Intermountain Medical Center 5171 S, Cottonwood St., Bldg. 1, Murray, UT  84107

SURVIVORS AND CAREGIVERS EDUCATION MEETING NOTES

Matt-Head-Shot

Thursday, May 18, 2017, Matt Townsend gave an entertaining and poinent presentation on relationships.

We all want loyalty, happiness and honesty in a relationship. To feel joy and peace in a relationship we must feel:

  • Safe – including physical, financial, mental, emotional, social and spiritual safety
  • Trust – consisting of honesty and competence
  • Appreciation- hearing or seeing words of approval (remember it takes four positives to ease one negative comment)
  • Respect – showing through words and deeds
  • Validate – hearing what is said to understand without having to agree
  • Encourage – getting into the heart of your loved one and doing what you can to help them reach their goals
  • Dedication – committing to your relationship and making them feel more important than any place or thing.

Matt said trauma or health issues are the number one way to expand in these areas. We don’t grow unless we are pushed. We learn through our challenges.

For a full synopsis of what I learned from Matt and a YouTube video, see my article, The Starved Relationship, or https://unitingcaregivers.wordpress.com/2017/05/25/the-starved-relationship

Dr. Matt Townsend has many podcast, YouTube videos and sponsors The Matt Townsend show on BYUradio. Entertaining insights on improving relationships for free. He’s also founder the the Townsend Relationship Center. For more information see Matt’s Website: http://matttownsend.com/


MassageUniversity of Utah Brain Injury Support Group located at Sugarhouse Health Center 1138 E. Wilmington Avenue, SLC, UT 84106.

Wednesday, May 23, 2017 topic was on the Benefits of Massage given by Molly Sullivan, LMT. Ryan Pello organizes this meeting. If you have questions by call (801) 581-2221.


Upcoming Events

BIAU Family & Professionals Annual Conference

Date: Friday, October 13, 2017

Time: 8am – 5pm

Place: Davis Conference Center, 1651 No. 700 W. Layton, UT 84041


Bright Ideas

                              USEFUL WEBSITES:

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.

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 Laptopsstories, tips and thoughts)

http://www.facebook.com/UTteensupportgroup (social interaction and the exchange useful resources)


Thank you for reading

Thank you for reading. I hope you found the information helpful and will follow this website via email to receive notifications of every new post. The “Follow” button is located at the beginning of the newsletter. However, if you want to subscribe only to a monthly newsletter, please email Barbara@UnitingCaregivers.com. I will add you to the newsletter email list and send you the link monthly.

If you wish to discontinue send a statement, “Unsubscribe to Newsletter” and I will remove your email address.

April 2017 Newsletter

PuzzleI’ve gathered pieces of information on this month’s support groups and therapy services offered in the Salt Lake Valley. In case you missed last month’s meeting, I’ve attached notes along with upcoming events you’ll want to put on your calendar. Also included are links to useful websites. If you have activity announcements or other information you’d like to share in this newsletter, please email Barbara@UnitingCaregivers.com. By assisting others with their puzzle, we get a clearer view of our own.

Mark this

FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

April 11, 2017 – Brain Injury Alliance Support Group for Adults, 6-8 p.m. Meets every 2nd Tuesday monthly at Sanderson Community Deaf Center5709 South 1500 West, SLC, UT  84123

This is a social group where dinner is enjoyed together and then games played or crafts made. All caregivers and survivors are welcome. For more information call: Jennifer (801) 468-0027 or Beth (801) 585-5511


April 20, 2017: Caring For the Caregivers Group, 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

LauriThe presenter for this night is Lauri Schoenfeld. Her topic is Embracing Fear to Move Forward. Lauri is a wife, mother of three, writer, child abuse survivor, scoliosis survivor and has dealt with massive depression. She will address what holds us back and how to overcome it so we can be our best selves. She is positive, fun and energetic. You’ll be glad you came.


 

April 20, 2017 – Brain Injury and Stroke Survivor Group 7-8 p.m. Meets every 3rd Thursday monthly at Intermountain Medical Center (IMC) 5171 S, Cottonwood St., Bldg. 1 Floor 9 Murray, UT  84107

Dr. Reddy

The presenter for this night is Cara Camiolo Reddy, MD, MMM. Her topic is Managing Mood and Fatigue. She is a new Neuro Rehabilitation Specialist and her favorite thing to remedy is neuro fatigue.


 

 

April 25, 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


Please Note

FREE WEEKLY GROUPS offered through INTERMOUNTAIN HEALTH CARE NEURO THERAPY SERVICES

Aphasia Talking Practice Group – Meets every Tuesday  Noon-1 p.m. 5770 South 250 East #G50

­­­­­­­­­­­­­­­Cognitive Skills Group – Meets every Thursday Noon-1 p.m. 5770 South 250 East #G50

 Meditation Group –  Meets every Wednesday 3 p.m. 5770 South 250 East Cafeteria Conference Room

Contact: Dr. Russo at antonietta.russo@imail.org


Epilepsy

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 @ (801) 455-6089 or Utah@efa.org

April 6, 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.

April 13, 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  84107

April 19, 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)

Sorry, cancelled this month – 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)

Coming Soon

Coming Soon  May 24, 2017Epilepsy Group for Teens 7 p.m.   Will meet the 4th Wednesday monthly West Jordan Library 

 

 


 Missed6

NOTES FROM MARCH MEETING’S

Deaf CenterBrain Injury Alliance Support Group for Adults  met Tuesday, March 14, 2017 at the Sanderson Community Deaf Center located 5709 South 1500 West

This social group enjoyed delicious meatball sandwiches together. Afterwards they played board games. All caregivers and survivors are welcome. 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.

  

Caring For the Caregivers Group plus the Brain Injury & Stroke Survivor Group Thursday, March 16, 2017  Speakers: Greg and Laura Nordfelt their topic was    Nurturing Relationships After Brain Injury

The Nordfelt’s spoke candidly about their personal experiences in Greg & Laura-tableregard to family and friend’s relationships.  The turned down meals, visits and other offers of help because they were overwhelmed with their new situations and were fiercely independent, resulting in friends and family giving them the space they thought they wanted or needed for healing. This left them feeling neglected, ignored, lonely, abandoned, isolated, disrespected, unsupported and misunderstood. They overcame those feelings by reaching out to others, making new friends and mending broken relationships.

For more detail on their presentation see articles:

 What Doesn’t Kill Us Makes Us Stronger, part 1

What Doesn’t Kill Us Makes Us Stronger, part 2

Nurturing Relationships 


Upcoming Events

BIAU 5K Run, Walk & Roll

Date: May 20, 2017

Time: 8 am

Place: Liberty Park – 650 E. 1300 S., Salt Lake City


Bright Ideas

USEFUL WEBSITES:

www.caregiver.org (online webinars for caregivers)

www.tbicommunity.org (online educational programs)

www.braininjury.com (medical, legal, information resource)

www.abta.org (brain tumor education and information)

www.cdc.gov/ncipc/tbi (brain injury facts, programs, education)

www.ninds.nih.gov/Disorders/all-disorders (education for brain injury, stroke and other neurological disorders)

www.nationalmssociety.org/Resources-Support (resource for those with MS)

 www.epilepsy.com/utah and/or 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)

 www.unitingcaregivers.wordpress.com (caregivers sharing stories, tips and thoughts)

www.facebook.com/UTteensupportgroup (social interaction and the exchange useful resources)


Thank you for reading

Thank you for reading. I hope you will follow this website via email to receive notifications of every new post. The “Follow” button is located at the beginning of the newsletter. However, if you want to subscribe only to a monthly newsletter, please email Barbara@UnitingCaregivers.com. I will add you to the newsletter email list and send you the link monthly. If you wish to discontinue send a statement, “Unsubscribe to Newsletter” and I will remove your email address.

March 2017 Newsletter

Missed6

NOTES FROM FEBRUARY MEETINGS

Deaf CenterBrain Injury Alliance Support Group for Adults  met Tuesday, March 14, 2017 at Sanderson Community Deaf Center in Murray.

This is a social group where dinner is enjoyed together and then games played or crafts made. All caregivers and survivors are welcome. In February, the second Tuesday fell on Valentine’s Day. We enjoyed a Panda Express dinner together and made valentine cards. Jennifer Gee and Beth Cardell do a great job directing this group. For more information call: Jennifer (801) 468-0027 or Beth (801) 585-5511


communicate Caring For the Caregivers met Thursday, February 16, 2017 at Intermountain Medical Center (IMC) in Murray. The speaker, Kim Kirkham, M.S. CCC-SLP shared Tips for Improving Communication.

Notes from caregiver, Barbara Wilson

Kim directed a helpful discussion and gave valuable communication tips. She was the perfect choice for this topic based on her profession as a speech therapist and personal experience with her dad being a TBI survivor. We appreciated her sharing information with us. Some helpful tips Kim shared: Body language is 55% of our communication. Tone of voice is 38% and the words used are merely 7%.

People will remember how they felt in your presence rather than the words you said.  Don’t have problem solving conversation when either one is tired. Have good lighting on your face and use eye contact, especially if hearing is an issue. To get their attention, use their name and move closer instead of getting louder.  Decrease background noise, if possible. If they’re in a chair, sit to the side of them. Standing in front conveys authority, not equality.

If memory is a problem, chalk or white boards are helpful for important events or schedules. Write in caps, it’s easier to read.

Repeating causes distress and frustration. Set boundaries to help you stay compassionate. Be mad at the disease and not at the loved one.


fatigueBrain Injury & Stroke Survivor Group met Thursday, February 16, 2017 at Intermountain Medical Center (IMC) in Murray. The Speaker, Dr. Jason L Smith, DC spoke on, Natural Ways to Decrease Fatigue and Improve Endurance.

Notes from survivor, Greg Nordfelt  gregnordfelt.com

Dr. Smith gave an educational presentation and slides. What we eat instantly impacts “neurodegeneration” (loss of connection between brain cells, fatigue and symptoms of aging, Alzheimer’s, etc). The same is true if we stop learning: it immediately impacts our stomach, our physical body starts to age, taking cues from our brain that we have passed our learning stage and are now physically supposed to start aging, become more lazy, tired, less active, less muscular, etc.

3 Keys to Decrease Fatigue:

  • Decrease sugar & increase protein! Stay completely away from fake sugar (it’s poison flat out!) Increase blood flow. Exercise 5 minutes as soon as you wake up!
  • Decrease inflammation. Don’t eat grains, dairy or soy. Exercise or walk (or move available body extremities) vigorously at least 2 miles 3 times a week (refer to Dr. Doidge’s 2nd book “The Brain’s Way of Healing”. This is the number one way to fight against neurodegeneration and fatigue. Exercising 2 miles generates dopamine. It also generates new brain cells.
  • Learn something new. Challenge your brain to learn new things as you age. This, along with exercise and feeding our stomach healthy protein, will release good brain chemicals and grow good brain cells.

Last, but definitely not least, five minute brain breaks per hour decreases fatigue. If you’re in a stressful time crunch, take 6 calm breaths because if you don’t, he said, “you’re going to crash”.

Dr. Smith says, “The brain and the stomach are connected. Feed both and exercise to win the daily fatigue battle.”

Thank you, Greg, for sharing your notes!


Bright Ideas

USEFUL WEBSITES:

www.caregiver.org (online webinars for caregivers)

www.tbicommunity.org (online educational programs)

www.braininjury.com (medical, legal, information resource)

www.abta.org (brain tumor education and information)

www.cdc.gov/ncipc/tbi (brain injury facts, programs, education)

www.ninds.nih.gov/Disorders/all-disorders (education for brain injury, stroke and other neurological disorders)

www.nationalmssociety.org/Resources-Support (resource for those with MS)

 www.epilepsy.com/utah and/or 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)

 www.unitingcaregivers.wordpress.com (caregivers sharing stories, tips and thoughts)

www.facebook.com/UTteensupportgroup (social interaction and the exchange useful resources)


Thank you for reading

Thank you for reading. I hope you will follow this website via email to receive notifications of every new post. The “Follow” button is located at the beginning of the newsletter. However, if you want to subscribe only to a monthly newsletter, please email Barbara@UnitingCaregivers.com. I will add you to the newsletter email list and send you the link monthly.

Where to Find Support

Support gearsWhen Mark was in a coma twenty-six years ago, the hospital provided a class once a week to discuss the effects of traumatic brain injury. Hating the position I was in and the information I now needed, I continued to drag my overwhelmed self into class every week. I wasn’t ready for the information, but I continued to go to the class and read the material they provided because I knew I had to know what might be ahead of us. I felt like I was just going through the motions, but it helped prepare me. Being with others who were in a comparable frightened state brought solace. Through our similar feelings and circumstances, empathy was found.

Months later at the rehab center there was a monthly support group, which Mark and I attended together. I felt comfort associating with others who were experiencing like situations. There is consolation when you realize you’re not isolated from society.

In the past, I hadn’t heard of a support group especially for caregivers, nor did I feel I had the time to participate in one. I knew there was a need, but finding the time is difficult if not impossible for some caregivers. That’s why I started Uniting Caregivers, which includes stories, tips and thoughts for online support.

My good friend, Laura Nordfelt, had a different vision. She saw the need to actually meet and strengthen each other by sharing experiences. She started Caring for the Caregiver shortly after I started Uniting Caregivers in October 2013. They meet monthly at Intermountain Medical Center in Murray, Utah and she’s done a marvelous job picking topics for caregivers. Laura asked me several times during the past three years to join forces since we are both passionate about supporting caregivers. I’ve given a few presentations to the group, but really didn’t know how I could add another item on my overloaded plate, even though it looked delicious and tempting to so.

This group meets at the same time the survivors do so I didn’t have to worry about Mark while I was at another meeting. I also belong to two writing groups; I enjoy the encouragement and information shared amongst authors. Support groups enhance my life and meeting face-to-face deepens relationships.

I decided it was time to juggle my schedule and join forces with Laura last November. I’m excited about the New Year and the presenters we have lined up and will share more of that information in upcoming newsletters.

Support-Stronger TogetherI still realize how hard it is for some caregivers to make time for a support group meeting. Since my mission is to encourage and help others realize they are part of a special society, I’ve decided to write monthly newsletters. I’ll share information and notes from the support group meetings I attend and list others around the Salt Lake Valley. I will include this newsletter on Uniting Caregivers. If you’d like to follow the blog, enter your email address on the website and receive notifications of new posts by email.

If you prefer just a monthly newsletter, please email Barbara@UnitingCaregivers.com. Type “subscribe to newsletter” in the subject line and you will receive a monthly newsletter with upcoming events and information on support groups.

March 2017 Newsletter <<<Click for PDF

What has been your experience with support groups?

 

Carry On

July is full of outdoor activities and celebrations that last all month long in Utah. It’s my favorite time of year with family reunions, outdoor plays, concerts, parades and many festivities to look forward to. The sun rises early, which makes it easier for me to do also. The weather is usually sunny and the daylight lasts until 9 pm, making this month the one to accomplish the most outside. I always have great aspirations for this month.

This year we started the month out by driving to Vancouver, Washington with our daughter, Katie. We enjoyed visiting with Mom Wilson, Karen and Mark Ray. Lucky for us our son, Christopher, lives just across the Columbia River in Portland, Oregon making our visit quadrupled the fun. We enjoyed an Independence Day celebration at the park with energetic music, food trailers, beautiful fireworks and the great company of family. It’s always hard to say good-bye to loved ones especially without knowing when we’ll see them again. We made the long trek home in about fourteen hours, which includes our fuel and rest stops.

My asthma flared up during our trip and I struggled more than usual to get it under control. When we returned home I went to the doctor for what I thought would be just a medication change. I left Mark home alone, expecting it to be a short doctor’s visit since I was her second appointment of the day. My oxygen level was low so they gave me a breathing treatment and oxygen, which confined me to the room until my oxygen level reached normal.

Two hours later, I left the room anxious to get back to work and to Mark. Remodeling construction had started near the large entrance/exit sliding glass door of the building. With no cone or sign before it, I didn’t see the piece of metal track that had been attached to the tile floor during my doctor’s appointment. I tripped and fell on it, landing hard on the tile, dislocating my right shoulder.

Dislocated shoulder 1

Dislocated Shoulder 07/08/16

My body wrenched in pain like I’d never felt before. I tried to get up, but couldn’t. A man came to my aide and before I knew it, I was sitting in a wheelchair and whisked to the Urgent Care Clinic in the building.

I heard someone report I was in and out of consciousness and my vitals dropped. “Call an ambulance; she needs to go to the hospital.”

“Please put my shoulder back in place,” I pleaded. “I need to get back home to my husband.”

The look on the doctor’s face helped me realized how silly the statement sounded, so I explained. “My husband has a traumatic brain injury and is confined to a wheelchair. He depends on me to get him in and out of the chair.”

“I don’t believe you’re going to be able to lift him for six to eight weeks,” he said while placing an IV for fluids and another one for morphine.

The first stranger who rushed to my aide looked at me drenched in perspiration from the pain and in sympathy said, “I’m sorry. Don’t worry about the medical cost. We’ll take care of you.” I assume he was the job foreman.

Submissive to all the medical team requests, I moved every which way they asked as they transferred me to the stretcher and rushed me to the hospital. For the next three hours the only thing on my mind was getting my shoulder back in place. My right arm went from feeling like it weighed 100 pounds, to numbness, to sharp, shooting pains running down it. I was sure my arm was dying and at times I thought death would be my only relief. No matter how many times I begged them to fix my shoulder there were tests that needed to be done to make sure I didn’t need surgery or an x-ray that had to be taken to show the best way to maneuver it back in place. Finally I was given a conscious sedation and like Humpty Dumpty who fell off the wall, I was put back together again. Instant relief followed, but then came the body shakes, which I will take anytime over the pain of a totally dislocated joint.

Located Shoulder 2

Healing shoulder, 07/19/16. The bump on my clavicle is from the break 25 years ago. I’m glad it didn’t break again!

I’m an aging caregiver who is dedicated to the love of my life. My worst fear is not being physically capable of caring for him. I’ve always known it’s a possibility, but I don’t know how to prepare for it. I know the options and none of them feel right. Even the option of relying on family and friends for help ties my stomach up in knots.

This year the sunny month of July has been the darkest I have felt in a long time. Depressing thoughts linger because my body can’t do what it wants to do. With my arm splinted in a sling and strapped to my side to allow torn tendons and ligaments to heal, my mind keeps focusing on the negative aspects of my life. Having to depend on others to help with Mark’s care for several weeks makes it hard for my heart to find hope in a brighter future. How do I dig out of this gloomy place and feel the sunshine in my life again?

brigham-young-and-pioneers-entering-the-valleyAnnually on July 24th, our state honors the Mormon pioneers who arrived in the Salt Lake Valley in 1847. I imagine after pulling handcarts or driving wagons with oxen or horses across the plains more than a thousand miles, the pioneers were happy to settle the desert landscape now known as Utah. Last week our celebration reminded me their trek exemplifies courage and faith. Their stories inspire me. They endured harsh weather, death of loved ones and starvation as their food and water supplies diminished.  Nothing had prepared the majority of these travelers for the exhaustion, illnesses and injuries they would suffer. They were beginners in a new territory, learning a new way of life.

I see similarities between my caregiving trek and my pioneer ancestors who walked approximately 1,248 miles from Nauvoo, Illinois. Although we thankfully have the comfort of a home with plenty of food and water, nothing had prepared me for the anxiety and exhaustion of caring for another, or the illnesses and injuries which keep arising. As we make it through one challenge only to receive another, I continue to be a beginner in a new territory, learning a new way of life that most people can’t fully understand. I am a modern-day pioneer and so are you as we struggle through our own personal trek. This connection gives me courage and faith to carry on.

The pioneers didn’t know how or when their journey would end. Similarly, I don’t know how or when ours will end. Like my ancestors’ examples, I’m committing to carry on with faith in every footstep for a brighter future. Even if we don’t reach our desired destination in this life, I believe we’ll be blessed beyond the grave, free from the harsh physical ailments which we have endured. With confidence, I picture this celebration far grander than I’ve ever witnessed and possibly can even imagine.

Just as I started the month of July with great aspirations, I end it with the same for the future and will carry on as best I can.