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 

 

 


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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. To subscribe to a monthly emails list, please email Barbara@UnitingCaregivers.com

Seizure Insights

Christine told about her sister’s seizures in Laura’s Story, part 2. Seizures are scary to witness, especially when you don’t understand what’s going on. I know because I’ve seen Mark have many. They look painful and leave him very confused and sometimes unresponsive. Mark’s first seizure was seven years after his traumatic brain injury (TBI) and left me with many questions and concerns. I found the short article below very informative.

What is a seizure? 

Reference http://www.epilepsy.com/learn/epilepsy-101/what-seizure

  • A seizure is a sudden surge of electrical activity in the brain.
  • A seizure usually affects how a person appears or acts for a short time.
  • Many different things can occur during a seizure. Whatever the brain and body can do normally can also occur during a seizure

What happens in the brain during a seizure?

  • The electrical activity is caused by complex chemical changes that occur in nerve cells.
  • Brain cells either excite or inhibit (stop) other brain cells from sending messages. Usually there is a balance of cells that excite and those that can stop these messages. However, when a seizure occurs, there may be too much or too little activity, causing an imbalance between exciting and stopping activity. The chemical changes can lead to surges of electrical activity that cause seizures.
  • Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.

The nature of seizures varies, because the lobes of the brain control different behaviors, movements and experiences.

Does just one or two seizures mean I will get epilepsy?

  • About half of the people who have one seizure without a clear cause will have another one, usually within 6 months.
  • If there is a known cause for your seizure (for example, brain injury or other type of known brain condition), then you are twice as likely to have another seizure.
  • If you have two seizures, there’s about an 80% chance that you’ll have more.
  • If your first seizure occurred at the time of an injury or infection in the brain, then you are more likely to develop epilepsy. Often, more seizures don’t occur until weeks or months after the initial injury or infection.
  • More seizures are also likely if your doctor finds abnormalities on a neurological examination (tests that are done in a doctor’s office to see how the nervous system is working).
  • An EEG test can look at the electrical activity of the brain and may help predict whether more seizures will occur. Certain patterns on the EEG are typical of epilepsy. If your brain waves show patterns of that type, you are about twice as likely to develop epilepsy.

Survivor—Nich’s Story Update

On February 16, 2014 Jamie wrote Survivor—Nich’s Story. I invited her to give us an update, which she graciously accepted.

Written by, Jamie Sorensen

Nich's FamilyFebruary seems like such a long time ago. We celebrated our six-year wedding anniversary and we’ve all got another year older! Since I last posted Survivor—Nich’s Story, part 2 back in February, there have definitely been a few changes in our lives. Unfortunately, Nich’s seizure activity has become more frequent, more severe and the recovery time has increased substantially.

In June, the neurologist that Nich’s seen since his car accident in 1999 retired and the entire practice closed. To make things even more difficult, they didn’t have any recommendations or referrals. After seeking advice from Nich’s neuropsychologist and our good friend “Google”, we were given the name of one of the top neurologists in Utah. The doctor reviewed his 15 years of files and decided to take him as a patient.  With epilepsy increasing in activity and severity, we discussed some different options. We’ve decided to go with a VNS (Vagus Nerve Stimulation) Therapy, which is basically a “pacemaker for the brain”. During the surgery, a small device is placed just under the skin up near the collarbone, and a wire runs from the device up to the vagus nerve in the neck. A special magnet held near the device triggers it to deliver a burst of stimulation, outside of the regular programmed intervals. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. For the most part, he’s able to “sense” approximately 75% of his seizures.  We are hoping and crossing our fingers that the VNS will help in decreasing his seizure activity, as well as helping the recovery process afterward. The surgery is scheduled for October 10th.

Nich & JamieAs Nich’s caregiver, I’ve had to learn to cope with the ever-changing and increasing seizure activity. It’s been really emotionally and physically exhausting. I have felt so helpless at times. If you’ve ever had to watch someone go through a seizure, you know exactly what I’m talking about. I have such a hard time leaving him when I have to go to work each night. I feel like I’m abandoning him as I back out of the driveway. I wish I could stay home to take care of him full-time and do more to protect him. My heart breaks a little bit every time Nich calls me while I’m at work crying, not knowing what just happened and why his entire body hurts. I want to run to my car and drive straight home to comfort him. I hate seeing my husband, my best friend, my whole world, scared and in pain.

Last month our daughter, McKenzie, actually witnessed Nich having a seizure. Even though we’ve talked about it a million times and have gone over “instructions” on what to do, she admitted that it was scary to see her Dad like that. Later that night, I talked with her and explained everything that had just happened. I walked her through what to expect when Dad has a seizure. It helped her to realize what a seizure really looks like, instead of just hearing about it. Now that she’s seen it, she isn’t as scared anymore.

Coping with being a caregiver can be difficult at times. One of the ways I cope is through writing.  I love to put my thoughts onto paper. I may not share them for the most part, but it seems to help. I love reading. I love listening to music. I’m that lady in the car on my way to work with the radio blasting, singing to myself. For the most part, the only time I really get to be by myself is during my shower, the drive to and from work, and of course the bathroom! I’m still trying to find more ways to cope and get things out instead of letting them build up inside. I admit I need to do a better job of taking care of myself. I need to sleep more, work out, eat better, etc. I need to make time for myself, even if it’s just 30 minutes to read or take in a movie, taking time to rejuvenate, so that I have the energy and strength to care for those I love. I don’t know how, but I need to somehow find the time.

I’ve been a little lost along the way in the form of support. There aren’t very many people I’ve come across who can even remotely understand what I’m going through. My husband found the perfect quote online the other day. “The emotional and physical abuse your body goes through having epilepsy is almost impossible to explain to anyone who doesn’t have it themselves. It’s frustrating trying to explain the overwhelming emotions you have right after a seizure.” This is the same for those of us who have to watch a loved one during and after a seizure. It’s not easy trying to explain to people what we are dealing with or going through.

Nich's kids1Being a caregiver has truly been an extreme blessing in my life. Yes, it is tremendously challenging and can sometimes push me to the limits.  However, it is also abundantly rewarding.  I love taking care of my husband. I’m proud of my family and what we do for each other. I love knowing I am here for him when he needs something. I am grateful for the lessons my children are learning.  They are becoming so responsible and so grown up. I love that they worry and get concerned. I love that they can now pick up on Dad’s “bad days” and know when he’s just simply “off”. They put others before themselves.They pick up the slack and chip in whenever they can. I couldn’t have better kids!

Earlier this month, I wanted to do something to connect with my husband and to show him how much I truly love every part of him and to remind him that I married him “in sickness and in health”, so I designed a tattoo. We went together and got our tattoos of purple and green ribbons. The green is for TBI (Traumatic Brain Injury) and the purple is for Epilepsy.

Nich's tattooNicholas is truly an amazing person.  He is one of the strongest people I know. I admire his drive and passion for life; he honestly never gives up! No matter what cards he’s dealt, he always finds his way through the challenges. Nich is such an incredible father and is constantly making sure that the kids and I are happy and have everything we could ever hope or ask for. I couldn’t ask for a better partner in life. I love knowing we get to spend the rest of our lives together. I am proudly a Caregiver for life.

Thank you Jamie for sharing your story. We wish you both the best in the upcoming months and hope the VNS helps Nich’s seizures! It has helped lessen Mark’s. We’ll look forward to hearing how the surgery went and the improvements it makes. You and Nich will be in my thoughts and prayers.