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.

Greg Nordfelt’s Story

Laura & Greg

Image credit: Greg & Laura 2011

One of the benefits of my caregiving journey is the people I meet and have the privilege to rub shoulders with. I met Greg and Laura Nordfelt at the 2013 Annual Brain Injury Conference. Immediately, our hearts connected when they shared their story with me. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the fight to return to a familiar way of life are very similar. They agreed to let me share their story on Uniting Caregivers in March of 2014, Greg and Laura Nordfelt’s Story. We have kept in touch over the past two years and I’ve enjoyed my friendship with them. Watching this couple grow and seeing the amazing outreach they both give to others inspires me. Thursday, September 17, 2015, Greg shared more of his story with Channel 4 News. With their permission, I share what Laura writes and the Channel 4 News interview.

“I am so proud of Greg Nordfelt and this interview on Thursday with Channel 4 news. Most of the recording ended up on the cutting room floor, but what showed was a glimpse of what he has been through in the last 4 years with his recovery process. More than all of this is the amazing job he has done volunteering with the TBI patients since then at TOSH, who meet twice a week working through their aphasia issues. On top of all this, three weeks ago he started volunteering at Intermountain Medical Center (IMC) on the very floor where he learned to get his life back with Physical, Occupational and Speech Therapy, giving hope to TBI patients and their caregivers. This is my sweet, giving and incredibly loving husband. xoxoxo .”

http://www.good4utah.com/news/local-news/new-study-provides-better-treatment-for-traumatic-brain-injury-patients

Greg & Laura

Image Credit: Greg & Laura 2011

I appreciate the inspiration Greg and Laura give to everyone who knows them. I am grateful for the awareness of TBI they spread by sharing their story. Together they are a powerhouse and are making a positive difference in our community. I can’t wait to see what they accomplish next. They are wonderful and I’m blessed by their friendship. Ride on Greg and Laura!

Greg and Laura Nordfelt’s Story

Laura & Greg

Greg and Laura Nordfelt                The day before the accident.

On August 15, 2011, our friend Jimmy, my husband Greg and I were riding our Harley motorcycles along a scenic section of highway 95, about 60 miles south of Coeur d’Alene, Idaho. Greg was feeling sick, from food poisoning contracted at a diner the night before, but he insisted that we continue on with our planned trip. I was on my own Harley behind Greg and saw him pass out and crash into a bed of lava rocks at the side of the road. I anxiously ran to him and gave first aid until the Emergency Medical Technicians (EMT) came. I’ve had EMT training and my skills took over until the professionals arrived. Greg was transferred by life flight to the nearest hospital in Coeur d’Alene.

Even though Greg was wearing a helmet he suffered a severe brain injury, a crushed leg and had deep open wounds from the impact. We spent 11 days at the hospital in Coeur d’Alene until he was able to be flown to the Neuro Rehab at Intermountain Medical Center (IMC) in Murray, Utah, which was closer to home and family. He was there for a couple weeks before coming home. He worked extremely hard to get back to work as a banker full-time over the next 5 months (starting initially at only 2 hours a week).

The left side of Greg’s brain was damaged beyond repair and the right side had to learn to take over the tasks of reading, writing, talking, walking, banking etc. This was difficult for both of us because it effected his personality and how we related to each other. Greg read a book called “My Stroke of Insight” by Jill Taylor, which explains in detail a neurologist’s loss of her left side of the brain function during a stroke. She had to cope with a complete driven right brain for all her activities.  This book had a tremendous impact on both of us.

Laura & Greg kissingOur marriage has been very different since the accident and not what I was prepared for. I’ve had to cope with his strange changes and sometimes I say to him, “Who are you and what have you done with my husband?” I wouldn’t say I’m a patient person and our six children can probably attest to that, but I have been extremely fortunate to be able to take one day at a time.  After all, isn’t that what marriage is all about?

Greg and I were very “fly by the seat of our pants” kind of people . . . always ready for the next adventure, whether it was motorcycles, riding our bicycles down hills at 60 mph, hiking where we maybe shouldn’t be hiking, jumping off cliffs, extreme diving, etc.  NOT so much now.  We are discovering new adventures in less dangerous ways.

I was not prepared to be a caregiver for my husband. My EMT training seemed to help some, but as a mother, being a caregiver came naturally. However, the thought of taking care of an adult TBI survivor long term was extremely hard, especially when there was no one taking care of me.  Brain injury patients are constantly surrounded by doctors and therapists. They are initially monitored and recorded and any progress is celebrated.  As a caregiver, I was left completely on my own to figure out my new life and how to make it work. I felt like I was set up to fail! There were no guidelines, no manuals and no pats on my back.

I was also dealing with Post Traumatic Stress Disorder (PTSD) from the accident. I tried personal therapy a couple of times, but couldn’t seem to find the right therapist for me.  I looked for caregiver groups, but none were readily available.  Within a year after Greg’s accident I asked to join the board of directors at the Brain Injury Alliance of Utah (BIAU).  It was my attempt at giving back to the TBI community. I was motivated specifically to start a “Caregivers Support Group” that was not available to me during Greg’s recovery. It was extremely important to me to help other caregivers that were lost like me. I also felt it would help my own healing while supporting the daily living issues of other caregivers. I felt that working together in groups would be therapeutic and healing for all of us.

Now we have our very own Caregiver Group monthly, at Intermountain Medical Center in Murray, Utah. We meet in conjunction with the Survivor Group on the third Thursday, at 7:00pm. Together we can learn how to cope, and find helpful resources. A big shout out of thanks goes to Kim Kirkham at TOSH for all her help launching this group and for her continued support. Greg has also been supportive and has helped me find a way to support TBI caregivers.

Monthly updates concerning the caregiver support group can be found on our facebook page: https://www.facebook.com/pages/Caring-for-the-TBI-Caregiver/705869382781093  Please press the “Like” button to get updates.

You can listen to Greg and Laura recount their experience and tell their amazing story.