May 2018 Newsletter

Welcome.AprI’m a wife and caregiver to a brain injury survivor who also has epilepsy. We benefit and enjoy meeting with others in similar circumstances. For this reason I’ve gathered information on this month’s support groups and therapy services offered in the Salt Lake Valley. If you live outside of this region, or are affected by another kind of condition, I encourage you to look for support groups near you relating to your particular health issues. Learning from and encouraging others in like situation makes the journey easier.

In case it’s impossible for you to get out, or you don’t live in this area, I’ve also included links to useful and inspiring websites.

If you have an activity, announcements or other information you’d like shared in this newsletter, please email Barbara@UnitingCaregivers.com


Spring1FREE SUPPORT GROUPS FOR BRAIN INJURY SURVIVORS AND CAREGIVERS

May 8, 2018 – 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 social group is for all caregivers and survivors. All are welcomed to share a main dinner dish together with a game afterwards.  Bring a side dish or dessert to share if you’d like. Call Jennifer (801) 386-2195, or Beth (801) 585-5511 for more information.

May 17, 2018 – IMC Caregivers and Survivors Education Groups, 7-8 p.m. Meets every 3rd Thursday monthly at IMC Cottonwood Medical Tower (TOSH Campus) 181 E. Medical Tower Drive, Murray, UT 84107. Caregivers meet on the 1st floor conference room and the Survivors meet on the 2nd floor conference room.

Caregiver’s topic – Getting the Most From Your Medical Insurance by Rob Benda, caregiver and father of a TBI Survivor. Rob will share pointers on how to work with your insurance company.

Survivor’s topic – Resilience by Alexandra Terrill, Professor of Occupational Therapy.

May 22, 2018 – University of Utah Brain Injury Support Group 7-8 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. May’s topic: Dr. John Speed, Physical Medicine & Rehabilitation, will host an “Open Mic” to answer all questions surrounding Brain Injury. Please call Ryan Pello or Annie Wallace at (801) 581-2221 for questions.


ReadyToRoll (1)

 

May1FREE WEEKLY GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPY 

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

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

Parkinson’s Talking Loud Group – Meets every 2nd Wednesday of the month-3:00pm at 5770 South 250 East #G50

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

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


Spring5FREE EPILEPSY SUPPORT GROUPS FOR THOSE EFFECTED 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 3, 2018 – Epilepsy Group for Parents, 7:00 – 8:15 p.m. Meets every 1st Thursday of the month at the Riverton Library Auditorium, 12877 S. 1830 W.

May 9, 2018 – Epilepsy Group for All, 7:00 to 8:15 pm. Meets every 2nd Wednesday of the month at the Provo City Library – 555 N. University Ave.

May 10, 2018 – Epilepsy Group for All, 7:00 – 8:30 p.m. Meets every 2nd Thursday of the month. – Intermountain Medical Center, 5171 S. Cottonwood St., Bldg. 6, 1st floor – CR2 in the Doty Education Center.

May 16, 2018 – Epilepsy Group for All, 6:30 – 8:30 p.m. Meets every 3rd Wednesday of the month at the SLC Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).

May 24, 2018 – Epilepsy Group for Teens, 7 – 8:30 p.m. Meets the 4th Thursday monthly at the West Jordan Library, 8030 S. 1825 W., West Jordan, UT. There are two teachers overseeing this group. Come to enjoy an activity and meet other teens with epilepsy.


Upcoming Events

Children’s Art Summer Program

Date:  June 25-28 & August 6-8, 2018

Time: 10 am to 12 pm

Place: Art Access @ 230 S 500 W #110, SLC, UT 84101

Epilepsy Foundation of Utah and Art Access are excited to bring you the opportunity for your child to express his or herself through art as part of an art therapy summer program. Your child will work with Jill Johnson(MAAT) and other children with epilepsy in a group setting to create art pieces using visual art mediums. Strengthen your child’s artistic voice through learning from others in an open, welcoming environment.

Admission: Free with advanced registration. Class size limited to 10 participants. Classes June 25-28 are for children ages11-17. August 6-8, children with cognitive age lower than chronological age. Please note that this program is exclusively designed for children living with epilepsy. If you have any questions or require more information, contact Margo at (801)-455-6089, or mthurman@efa.org.


 

Bright IdeasHELPFUL 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.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)


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)


LaptopsSHARING WEBSITES:

Laptops http://www.brainline.org/abbymaslin (blog about loving and learning after TBI)

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

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


newsletter

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.

April 2018 Newsletter

Spring6I’m a caregiver to a brain injury survivor who also has epilepsy. We benefit and enjoy meeting with others in similar circumstances. For this reason I’ve gathered information on this month’s support groups and therapy services offered in the Salt Lake Valley. If you live outside of this region, or are affected by another kind of condition, I encourage you to look for support groups near you relating to your particular health issues. As you learn from, and encourage others in like situations, the weight of your worries will be lightened.

In case it’s impossible for you to get out, or you don’t live in this area, I’ve also included links to useful and inspiring websites.

If you have an activity, announcements or other information you’d like shared in this newsletter, please email Barbara@UnitingCaregivers.com


Spring3

FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

April 10, 2018 – 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 social group is for all caregivers and survivors. All are welcomed to share a main dinner dish together with crafts or a game afterwards.  Bring a side dish or dessert to share if you’d like. Call Jennifer (801) 386-2195, or Beth (801) 585-5511 for more information.

April 19, 2018 – IMC Caregivers and Survivors Education Groups, 7-8 p.m. Meets every 3rd Thursday monthly at IMC Cottonwood Medical Tower (TOSH Campus) 181 E. Medical Tower Drive, Murray, Utah. Caregivers meet on the 1st floor conference room and the Survivors meet on the 2nd floor conference room.

Caregiver’s topic: Managing Stress – by Michelle Thornell, stroke survivor, teaching meditation and relaxation techniques.

Survivor’s topic: Lessons From a Survivor – by Kris Sanford a spinal cord injury survivor.

April 24, 2018 – University of Utah Brain Injury Support Group 7-8 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. This month’s topic: Social Communication and Relationships – by Summer Rolin, Psyd. She will give ways for helping others understand your injury. Please call Ryan Pello or Annie Wallace at (801) 581-2221 for questions.


ReadyToRoll (1)


April1FREE WEEKLY GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPY 

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

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

Parkinson’s Talking Loud Group – Meets every 2nd Wednesday of the month-3:00pm at 5770 South 250 East #G50

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

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


Spring4FREE EPILEPSY GROUPS FOR THOSE EFFECTED 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.

April 5, 2018 – Epilepsy Group for Parents, 7:00 – 8:15 p.m. Meets every 1st Thursday of the month at the Riverton Library Auditorium, 12877 S. 1830 W.

April 11, 2018 – Epilepsy Group for All, 7:00 to 8:15 pm. Meets every 2nd Wednesday of the month at the Provo City Library – 555 N. University Ave. New EPILEPSY SUPPORT GROUP in Utah County! 

April 12, 2018 – Epilepsy Group for All, 7:00 – 8:30 p.m. Meets every 2nd Thursday of the month. – Intermountain Medical Center, 5171 S. Cottonwood St., Bldg. 6, 1st floor – CR2 in the Doty Education Center.

April 18, 2018 – Epilepsy Group for All, 6:30 – 8:30 p.m. Meets every 3rd Wednesday of the month at the SLC Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).

April 25, 2018 – Epilepsy Group for Teens, 7 – 8:30 p.m. Meets the 4th Wednesday monthly at the West Jordan Library, 8030 S. 1825 W., West Jordan, UT. There are two teachers overseeing this group. Come to enjoy an activity and meet other teens with epilepsy.


Coming SoonEducational Seminar with Dr. Angela Peters, Dr. Blake Newman, & Dr. John Rolston. This free educational seminar will discuss new treatment options for drug-resistant epilepsy. Learn about new advances in neurostimultion and resective surgery. Come join other individuals living with epilepsy and caregivers.

  • Wednesday, April 4th, 2018Springtulips
  • Davis County Library Auditorium
  • 133 S. Main Street, Farmington, UT 84025
  • Registration begins at 6:30 p.m.
  • Program runs 7 – 8 p.m.

_____________________________________________________________________

Bright IdeasHELPFUL 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.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)


Uniquely abled

Springflowers2ACTIVITIES 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)


LaptopsSHARING WEBSITES:

Laptops http://www.brainline.org/abbymaslin (blog about loving and learning after TBI)

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

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


newsletterThank 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.

 

March 2018 Newsletter

MarchluckThe life of a survivor may not be considered lucky, but it’s made easier by knowing there are others who understand and share similar circumstances. I am a caregiver to a brain injury survivor who also has epilepsy. I’ve gathered information on this month’s support groups and therapy services offered in the Salt Lake Valley for those involved with these health issues. If you live outside of this region, or are affected by another kind of condition, I encourage you to look for support groups near you relating to your concerns. Your luck can improve as you learn from and encourage others in like situations.

In case it’s impossible for you to get out, or you don’t live in this area, I’ve also included links to useful and inspiring websites.

If you have an activity, announcements or other information you’d like shared in this newsletter, please email Barbara@UnitingCaregivers.com


MarchLeprechaunFREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

March 13, 2018 – 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 social group is for all caregivers and survivors. All are welcomed to share a main dinner dish together with games afterwards.  Bring a side dish or dessert to share if you’d like. Call Jennifer (801) 386-2195, or Beth (801) 585-5511 for more information.

March 15, 2018 – IMC Caregivers and Survivors Education Groups, 7-8 p.m. Meets every 3rd Thursday monthly at IMC Cottonwood Medical Tower (TOSH Campus) 181 E. Medical Tower Drive, Murray, Utah. Caregivers meet on the 1st floor conference room and the Survivors meet on the 2nd floor conference room.

Caregiver’s topic: It Takes a Village: A Caregivers Perspective – by Chris Benda. She will share with us how she finds and uses resources available.

Survivor’s topic: Social Skills, Communication & Relationships – by Summer Rolin, Psyd. She will give ways for helping others understand your injury.

March 27, 2018 – University of Utah Brain Injury Support Group 7-8 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. This month’s topic: Brain Injury Resources by Glen Lanham. Learn how the Brain Injury Alliance of Utah can help you. Please call Ryan Pello or Annie Wallace at (801) 581-2221 for questions.


March1FREE WEEKLY GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPY 

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

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

Parkinson’s Talking Loud Group – Meets every 2nd Wednesday of the month-3:00pm at 5770 South 250 East #G50

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

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


March3FREE EPILEPSY GROUPS FOR THOSE EFFECTED 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

March 1, 2018 – Epilepsy Group for Parents, 7:00 – 8:15 p.m. Meets every 1st Thursday of the month at the Riverton Library Auditorium, 12877 S. 1830 W.

March 8, 2018 – Epilepsy Group for All, 7:00 – 8:30 p.m. Meets every 2nd Thursday of the month. New 2018 Murray location is at the Doty Education Center – Intermountain Medical Center, 5171 S. Cottonwood St., Bldg. 6, 1st floor – CR2.

March 14, 2018 – Epilepsy Group for All, 7:00 to 8:15 pm. Meets every 2nd Wednesday of the month at the Provo City Library – 555 N. University Ave. New EPILEPSY SUPPORT GROUP in Utah County! 

March 21, 2018 – Epilepsy Group for All, 6:30 – 8:30 p.m. Meets every 3rd Wednesday of the month at the SLC Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).

March 28, 2018 – Epilepsy Group for Teens, 7 – 8:30 p.m. Meets the 4th Wednesday monthly at the West Jordan Library, 8030 S. 1825 W., West Jordan, UT. There are two teachers overseeing this group. Come to enjoy an activity and meet other teens with epilepsy.


ReadyToRoll


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.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)


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)


LaptopsSHARING WEBSITES:

Laptops http://www.brainline.org/abbymaslin (blog about loving and learning after TBI)

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

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

newsletter


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.

Go For The Gold

Kevin PearceThe Olympics are packed with hopefuls, and I love to hear their stories of overcoming obstacles while pushing the boundaries in pursuit of their dreams. The passion for their sport and years of dedication to training is motivating. A week before the Olympics started, I watched a documentary, The Crash Reel, which gave me a new perspective on the snowboarding events.

Do you remember the snowboarder Kevin Pearce?  He expected to be the gold medal contender for the United States in the men’s halfpipe in the 2010 Winter Olympics. On December 31, 2009, he was critically injured in Park City, Utah, during a training run. He struck his head above the left eye halfway down the pipe doing a double cork. He was flown to the University of Utah Hospital and was in critical care for nearly a month, shattering his dreams for the gold in Vancouver, Canada.

Shaun White won the gold that year, while Kevin was immersed in the hardest, most meaningful training of his life. Once stabilized enough to move, Kevin was taken to Craig Hospital, a center which specializes in traumatic brain injuries located in Denver, Colorado. For the next four months he worked harder and focused entirely on relearning to do the simple tasks of daily living before he could move back home with his family in Vermont.

Kevin Crash ReelThe Crash Reel, recounts the ambitious rise of Kevin and the support of an extraordinary family confronted with a devastating injury. Kevin is the youngest of Simon and Pia Pearce’s four sons. His brothers, Andrew and Adam are also snowboarders. David, who has Down syndrome, snow skis in the Special Olympics. Their story is inspiring as they come together to help Kevin re-discover himself and find purpose and meaning in the snowboarders lost dreams. I appreciated this family for allowing the cameras in his hospital room and in their home to share the intimate details of the recovery process. The documentary captures vulnerable moments as Kevin reconciles his new life post-injury with the snowboarding superstar he was before.

In 2008, Kevin was the first athlete in X Games history to compete in three medal events in one day and he won medals in all three in Aspen, Colorado. Even as a young child he was entirely focused on snowboarding and he couldn’t imagine life without it. After the accident, he was determined to ride on the snow again. His family and doctors tried to discourage him from doing so. Because of his short-term memory problem, it was a constant battle. Kevin states now that the brain injury was hard for him to understand because he couldn’t see it, nor did he have any memory of the tough recovery. When Kevin reviewed the recordings of his accident, he said he’d had worse falls and came out okay, so he couldn’t understand the concern. The neurologist told him he had several concussions leading up to the one that caused a coma, and one more blow to his head could cause death. While most wouldn’t be willing to share such a difficult experience on film, this family didn’t shy away from the opportunity.

kevin-pearce-2 years post TBIKevin resolved to push the limits and return to what he called his “true love.” Almost two years after the accident he strapped on his board and took his first ride with his friends and two brothers by his side. The movement made his vision double. He lacked the coordination for even a small jumped. In many ways, he said, he didn’t feel like himself on a snowboard.

Kevin finds comfort in a quote from Eckhart Tolle, “What could be more futile, more insane, than creating inner resistance to something that already is?”

Likewise, Kevin said, “This brain injury is. This happened to me, so creating inner resistance to this is completely insane because I cannot take it back. I cannot change what happened to me and I never will be able to change December 31, 2009. That day happened.”

Kevin love your brain

Kevin has a new passion now, Love Your Brain Foundation. It was born from the documentary, The Crash Reel. His mission is to educate about concussions and other types of brain injuries, along with transforming physical and emotional well-being through yoga, and building a community through brain health experiences. It’s apparent to me that while Kevin’s life is different now, somethings haven’t changed. Kevin’s still determined and focused. He still gives his all to his passion and never settles for average. Check out the website, it’s impressive. http://www.loveyourbrain.com/

Kevin may not have a gold medal from any Winter Olympics hanging in his trophy case, but his comeback story is real and relatable to all kinds of survivors and caregivers. It’s been a tough journey, but he has found peace and acceptance with his new life, which I believe makes him a first place winner.

I admired the Olympic candidates. Their determination and perseverance for their beloved sport are inspiring. The opening ceremony was enthusiastic, filled with anticipation for the games to begin. The closing ceremony was pleasurable with a flicker of melancholy. The stories of triumphs in between were most rewarding and why I loved to watch the participants. When the flame was extinguished, it felt like the end of an epic holiday. The sadness comes from knowing it will be a while before we’re going to enjoy that kind of excitement and inspiration again. However, their lives and ours go on. Day by day we each have a deep sense of purpose, along with struggles to overcome for advancement. My take away from this year’s Olympians and Kevin Pearce’s story is, embrace where life takes me, while striving to do, and be the best I can. We should all go for the gold, even when life changes our dreams.

Thanks Pyeongchang for being a great host to the world. I wish the love and unity could last forever!

 

 

 

Ending a Thanksgiving Month

This month has been hard, harder than usual. So another fitting title came to mind, Grateful This Month is Over. However, the word thanksgiving makes me smile, so it quickly became my preference.

Sammy

Sammy at 22 years old.

The first two days in November were uneventful, like the calm before the storm.  The cliché is most fitting due to the unseasonably nice and warm weather we were enjoying. On the third day, my month fell apart when our twenty-two-year-old cat, Sammy, disappeared. He seemed anxious that day, meowing and pacing the house. The weatherman predicted a storm coming and I assumed Sammy sensed it too and wanted to go outside to enjoy the nice weather while he could. I let him outside and took advantage of the empty house by vacuuming. When I finished, I opened the back door, but he wasn’t there. At this point I wasn’t too worried and thought he just ventured farther than usual. I went back inside to complete a few more chores. The wind started to howl and it was dark. He wasn’t there on my second check. I earnestly searched all his favorite outdoor spots to curl up, exploring every possible place in our yard and garage. When he wasn’t there I got in our van and searched the streets. No Sammy. Did he run away to die? For the past year I’ve joked he was in hospice care because last November I brought our outdoor cat inside, due to wounds he received in a cat fight.  I really didn’t expect he’d survive then, but wanted to make his last days comfortable and happy even though he often triggered my asthma. He was my irrigation buddy and kept me company every time I worked out in the yard. He was there for us when our children grew up and moved away. A portion of our garage became his apartment, which he could freely go in and out of during the day, but closed in at night. He was there for me every time I came home, which I appreciated, especially during the times Mark was hospitalized. We’ve put a cat down before and I wasn’t ready to do it again despite his old age. I hoped Sammy could pass naturally in our home with us by his side.

It’s hard not knowing what happened to Sammy. I feel cheated I didn’t get to give him a proper goodbye for all those years we’ve enjoyed his companionship. But I’m grateful for the memories made and I especially appreciate this past bonus year we’ve had with him.

Dad & Sammy

Dad with Sammy, Dec. 2016

Six days later, after I’d raked most of the leaves in our yard and moved every storage box in the garage looking for Sammy with no closure made, my dad had a heart attack. Heart disease is unfortunately prevalent in my family. Dad’s first heart procedure was in 1985 – a triple bypass surgery. Then he was only 57 years old. In 1995 he had an heart attack and they put a stent in to correct the blokage. For the past year I’ve been going with Dad to his cardiologist appointments treating his heart murmur, a-fib and congested heart failure. I worried his heart was a ticking time bomb and I fretted about the when and how it would go off. Luckily it was a mild heart attack and not the massive one I feared. Over the next 6 days he had many tests and two procedures to create the best treatment plan for his heart problems. A heart valve replacement and a pacemaker were the remedies given and he made it through the surgeries with only one complication. His heart rhythm was off, so they had to give him a shock treatment which corrected that problem. We were relieved and expected to bring him home in a few days. On discharge day his heart went out of rhythm again and despite medication, they couldn’t get his heart to slow down.

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Taking time to celebrate with my mom and my super siblings. I sure love this crazy bunch! We were missing Dad, so we took the cake and ice-cream to the hospital conference room to have with him. Nov. 2017

After two days another shock procedure became necessary. It did the trick and now we pray he can stay in rhythm. He is a miracle and we’re grateful for so many prayers which aided his recovery. Close calls like this make me realize how fortunate I am to have my parents. It renews my appreciation for their influence in my life and the foundation they set in building a strong family. I have wonderful siblings and collectively we support and unite, especially when one of us is in need. I’m blessed to go through life with them.

As if the above wasn’t enough stress, Mark’s severe bladder infection and elevated PSA level led to more tests, which found a lesion in his bladder and an enlarge prostate.  Surgery to fix both problems is scheduled the first week in December.

An unfortunate side effect of Mark’s traumatic brain injury is seizures and they are more numerous when he has any other health issue. This month the seizures have come abundantly.

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Nov. 2017 Mark and I

Mark is blessed with a great sense of humor and he uses it constantly to cope and to put others at ease with laughter. The other night after a seizure, I asked him how his head felt. He said, “Full of wisdom.”

“I’m not sure how that feels, but I assume it would feel pretty good,” I replied as my worries were lifted.

In the urologist’s office, after the doctor explained the upcoming procedure, he looked at Mark and asked him if he had any questions. Mark rubbed the top of his bald head and said, “How do you keep your hair?”

The doctor laughed and replied, “I have a hair Goddess. She blesses me with hair so I can cut it and donate it for wigs. Then she blesses me again.”

I‘m fortunate to have a man that works through hardships with comedy. He’s a joy to be with and knows just how to lessen my concerns.

I can’t blame Sammy for taking off. There have been days this month I wish I could crawl under a bush somewhere and not be found. I wonder if he sensed a different kind of turmoil than the weather storm that was brewing the night he left. I speculate he thought he’d do me a favor by leaving and give me one less thing to tend to.  If this was he thought, he didn’t realize the hole in my heart he’d leave.

The month of November encourages me to have a gratitude attitude. This month I’m thankful that despite the hardships and worries experienced, I still have a lot to appreciate!

Our Happy Place

Hip QuoteTwo months ago today Mark had his second total hip replacement surgery. Out of the three most common replacement surgeries, hip, knee and shoulder, we’ve been told the hip replacement is the easiest to recover from. We saw many people during his seven weeks of in-patient rehab days who healed a lot quicker than Mark, even with a knee or shoulder surgery. It’s hard not to get discouraged. This is when I realize having a short-term memory problem is a blessing that Mark inherited from his traumatic brain injury (TBI). He lives in the moment, which is what I’m trying to learn how to do.

DadsRightHipDadsLeftHipThe pain of moving joints, muscles and tendons which have been cut and were not in good condition beforehand seemed at times unbearable. Mark’s ability to make his body move is difficult with his TBI under normal conditions, but throw a surgery in the mix and it’s nearly impossible. However, he persistently works hard to please the therapists and me, doing all that is asked of him, even when he doesn’t feel like it. He has made remarkable progress for his circumstances. When I liken his abilities to before surgery and not another patient, I am thrilled with his progress.

Often right before or during a painful stretch, Mark’s therapist would say, “Go to your happy place.” To that Mark would reply, “My happy place is any place other than here.”

Wanting to be helpful, I started naming vacation spots which hold wonderful memories. “How about the beauty of Zions, Bryce and Grand Canyon; remember the thrill of seeing the parks for the first time on our honeymoon?”

“I just want to go home.” Mark replied.

My thoughts moved to the gorgeous State of Washington where Mark grew up. “I love Deception Pass and the San Juan Islands. I look forward to our next trip there, how about you?”

“Home is my happy place so take me home.” Mark pleaded as the painful stretch continued.

As a wife and caregiver, I want nothing more than for Mark to be better. My world has revolved in this endeavor for twenty-five years next month. In the first few years after his TBI, it was a race against time because it was believed that the greatest amount of progress would happen in the first year and then slow down and plateau within the following couple of years.

Subsequent years we continued seeking for improvement with foot surgeries on both feet to correct foot drop and toe tendons cut to release curl to make standing possible. Also he’s had previous hip surgeries to clean out the joints for improved movement and a Vagal Nerve Stimulator (VNS) implant to help control his seizures along with the various surgeries in the beginning which saved his life. All told, Mark has had fifteen surgeries since the car accident.

Mark turned sixty last November so the path of our journey seems shorter than it used to, which adds a new dimension for recovery importance. It’s evident to me that striving for improvement is a lifetime pursuit. But this is not the life we’d planned and there is a certain amount of grieving that happens over the loss of dreams and honestly some dreams are harder to bury than others.

I’m human and some days I run out of patience and energy. I want Mark to be better now, but recovery is still happening. We are no longer in an in-patient facility, but are now engaged in out-patient therapy. I’m finding it hard to get into a regular routine with the interruptions of driving to and from the needed therapy sessions daily, preparing meals, managing prescriptions and doing the regular household chores. These are the responsibilities I was relieved from while Mark was at the rehab center. Don’t get me wrong, I’m happy to be home, but I’m looking forward to these common tasks becoming second nature to me again. Feeling overwhelmed makes me wish for a far-away trip, a vacation from health concerns and worries. However, the TBI and physical limitations go with us no matter where we are—so there’s really no escape.

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Backyard – My happy place.

At the same time, I’m grateful to be home where we have our privacy and some control over our own time. I appreciate the beautiful place where we live, which was custom built to meet Mark’s needs. For us it is the most comfortable and peaceful place on earth, designed to make our life easier. The openness and wide hallways make it possible for Mark to maneuver in a wheelchair. The large shower which Mark can roll right into and a bathroom sink he can roll under creates independence. Even outside we have cement sidewalks around the backyard so we can enjoy the outdoors together. We are fortunate to live in such a house and we have awesome neighbors too. Whenever I feel sad about the places we can’t go, I remember, there is truly “no place like home.” We are grateful after nearly eight weeks of being away to finally be back in our “happy place.” We couldn’t be more thrilled that the surgeries are finally behind us and given a year to heal, I’m certain Mark will be entirely pleased with his hip replacements.

Where is your happy place?

The Wonders of Recovery

Mark’s left hip replacement went well last Tuesday, January 26th, despite the delay. It didn’t even get started until 5:30 PM due to difficulties with a prior surgery. Around 9:30 PM he was moved into a hospital room groggy, but awake. It made for a very long day and night. His appetite and strength have been very good. The main concern has been the dark, huge bruise from under his armpit to his waistline, not where we expected to see bruising after hip surgery, which makes me wonder what went on in that surgical room.

Wednesday, Mark had a radiation treatment to slow the bone growth in his hips, which is the cause of his joint problems. Thursday, he was released from the hospital to Rocky Mountain Care.

If you’ve experienced rehabilitation, you’re probably familiar with uncertainties like: How long will it take to recover? When will we realize the advantage of surgery? How much pain will have to be endured? These and possibly many more questions, along with the enormous desire to feel better right now are part of the recovering process.

Before Mark was discharged from the hospital with the right hip surgery last July, I visited six rehab centers in our area which were listed with the insurance company. I can’t imagine spending such an important and limited time in a facility without doing research first. With the doctors recommendation, we’d wanted Mark could go to HealthSouth for rehabilitation. They specialize in neurological problems and since Mark has a traumatic brain injury (TBI), I knew they had equipment which Mark would need for rehab. However, the insurance wouldn’t allow it because this rehab was based on a hip surgery and not TBI. Disappointed, yet determined to get Mark the best possible help with therapy, our second choice was Rocky Mountain Care. I was impressed with their homelike atmosphere, clean smell and they had more equipment than the other gyms I visited on the insurance approved list.

Mark’s TBI and physical limitations give him special needs. At home we have a standing frame and a roll-in shower along with a shower/commode chair which he uses daily. The rehab centers on our insurance list didn’t have either and since they’re important for his recovery, therapy plan and general health, I’m willing to bring them from home along with his custom walker. The challenge is finding a room which has space for it all, plus an extended bed for his height and a trapeze, which helps him change position while he’s in bed. Along with these essentials he needs the capability to maneuver his wheelchair in and out of the room. Wow, this list sounds pretty lengthy and must be why we don’t travel anymore.

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Suite kitchen and my office area. Door in between goes to bedroom.

Suite living room

Suite living room

Fortunately, Rocky Mountain Care has a couple of rooms which can accommodate Mark’s needs and they’re willing to let us arrange the room to do so. In August and September of 2015, we were lucky enough to get a suite. It was beautifully furnished and definitely the nicest room in the building. The kitchen had a full-size fridge , small microwave and a solid wood dining table with six cushion chairs.

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Suite living room with therapy balloons and balls.

Suite bathroom

Suite bathroom

The living room was furnished with a couch, two comfortable stuffed chairs separated by a table and lamp and a television on top of a beautiful wood stand. A large wood desk was in the back of this room by a glass sliding door which led out to a small patio. The view of the mountains from the living room and patio was spectacular.

The separate bedroom had two twin sized beds, a large dresser, a chest of drawers and a roomy closet. The bathroom had ceramic tiles with a roll-in shower and was perfect for the shower/commode chair or wheelchair. This is unlike any other room Mark’s ever had in a rehab center. We felt spoiled and a little guilty for having it.

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Therapists, Brandi and Trish

The room was wonderful, but the biggest advantage to Rocky Mountain was the therapists. They were knowledgeable, caring and worked hard to improved Mark’s abilities. For this reason, they were our first choice this time around. It was nice to have the decision made before surgery and it actually decreased a day in the hospital because we made the arrangements beforehand.

Since Mark has a severe short-term memory problem, he is dependent on me to keep him oriented. Unfamiliar surroundings and routine make him feel unsettled and his memory is worse. He forgets what he’s supposed to be doing and where he is, which can make him agitated or anxious. Since I want him to get the full advantage and have the best experience with rehab, I prefer to stay with him. The suite made it easier, but because it’s a lot more costly than a regular room, we are not in the suite for this round of rehab. It’s been an adjustment and the difference is like being on a cruise verses camping complete with an air-mattress for me. It’s hard for me to go home because I worry he might have a seizure and the nursing or aide staff will not know. I wonder if he’ll be able to find or remember how to use the call button when he needs help and the waiting time for that help also concerns me.

Mark's bed on the west wall.

Mark’s bed on the west wall.

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Entrance to room

I like to be involved in Mark’s care—not to interfere, but rather assist while he is here. However, it’s awkward to step back since I’ve been taking care of him for so many years. I have to continually remind myself  that what seems so obvious or natural to me isn’t for the professional caregiver who has several patients at one time with all different levels of abilities. I’m realizing every rehab experience is different even with the same patient, therapists and caregiver staff.  But the goal is always the same—to get home stronger and better. We’re confident it will happen with the therapy and supported care we have here.

Mark's standing frame and my work station.

Mark’s standing frame and my work station. West and south wall.

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East wall with my air-mattress standing up, which I lay down for sleeping.

 

 

 

 

 

 

 

We are grateful for all the well wishes and prayers. We feel blessed and amazed at Mark’s ability to heal and adapt to foreign implant objects. This along with all the love and care of others is the most wonderful part of recovery.