October 2017 Newsletter

Because our family is effected by brain injury and epilepsy, we understand the complications and feelings of isolation. Associating with others in similar circumstances inspires and encourages us in our journey. For this reason I’ve gathered information on this month’s support groups and therapy services offered in the Salt Lake Valley. I also included notes from last month’s meetings in case you missed it. Please 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.

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FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

October 10, 2017– Brain Injury Alliance Support Group for Adults, 6-8 p.m., meet the 2nd Tuesday monthly at Sanderson Community Deaf Center, 5709 South 1500 West, SLC, UT 84123. Join us for a chili dinner. Bring your favorite chili toppings, a side dish, or dessert to share with the group if you would like. A spooky craft will follow dinner. For more information contact Jennifer (801) 386-2195 or Beth (801) 585-5511.

October 19, 2017 – IMC Caregivers and Survivors Education Group, 7pm., meet the 3rd Thursday monthly at Intermountain Medical Center (IMC) 5171 S., Cottonwood St., Bldg. 1 Murray, UT 84107.

Caregivers meet in the conference room on the 7th Floor. This month’s topic: Tricks to Getting Things Done and the Treat of Accomplishment presented by Mark Fox, Director of Neuro Rehab. Timely information to get us through the holiday season.

Survivors meet in the conference room on the 9thFloor. This month’s topic: Exercise, Vitality and Well-being presented by Stephanie Obradovich, Physical Therapist. Please wear comfortable clothing. We will be participating in yoga, Tai Chi and simple exercises.

October 24, 2017 – University of Utah Brain Injury Support Group, 7 p.m., meet the 4th Tuesday monthly at U of U Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. Chris Benda, whose son is a TBI survivor, will be presenting Access to Community Resources. For more information contact, Ryan Pello at (801) 581-2221.

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FREE WEEKLY GROUPS

INTERMOUNTAIN HEALTH CARE NEURO THERAPY SERVICES

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

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

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

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

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Epilepsy Groups for those affected by seizures.

Together they 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

October 5, 2017 – Epilepsy Group for Parents 7:00 p.m.-8:15 p.m., meets the 1st Thursday monthly at Riverton Library Auditorium 12877 S. 1830 W., Riverton, UT.

October 12, 2017 – Epilepsy Group for All Effected by Seizures 7:00 – 8:30 p.m., meets the 2nd Thursday monthly at Intermountain Medical Center (IMC) 5171 S. Cottonwood St., Bldg. 1, Ninth Floor, Murray, UT.

October 18, 2017 – Epilepsy Group for All Effected by Seizures 6:30 – 8:30 p.m., meets the 3rd Wednesday monthly at SLC Main Library 200 E. 400 S., SLC, UT (2nd floor conference room).

October 25, 2017 – Epilepsy Group for Teens, 7 p.m., meets the 4th Wednesday monthly at 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.

October 26, 2017 – Epilepsy Group for Women Only 7:00 – 8:15 p.m., meets the 4th Thursday monthly at SLC Main Library 200 E. 400 S. (3rd floor conference room)

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THE BRAIN INJURY ALLIANCE SUPPORT GROUP for ADULTS MEETING NOTES

Sanderson Community Deaf Center, 5709 South 1500 West, Murray, UT 84107

On Tuesday, September 12, 2017, a meal was enjoyed and a fun, friendly game of Family Feud. 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

On September 21, 2017, the Caregivers met in the conference room on the 7th Floor for a great presentation on Strategies for Facilitating a Good Night’s Sleep. Presented by Neuropsychologist, Jon L. Pertab, PhD who gave pertinent information on the importance of sleep and tips on how to improve our rest. The Survivors met in the conference room on the 9th Floor. Trisha Beck shared her own story of Brian Injury and relatable Journey to Live.

University of Utah, Sugarhouse Health Center 1138 E. Wilmington Avenue, SLC, UT 84106. On Tuesday, September 26, 2017,  Kellie Linarez with the State of Utah Department of Workforce Services shared information on the Vocational Rehab process and where to go for help. She also gave a workshop schedule for the Work Ability Job Fair on October 3, 2017. Another one will be held in the Spring on April 10, 2018.

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BIAU FAMILY & PROFESSIONALS ANNUAL CONFERENCE

Building Connections for a Brighter Tomorrow

Date: Friday, October 13, 2017

Time: 8am – 5pm

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

Registration: $40 for members/ $50 for nonmembers and includes lunch. Scholarships available. 

See https://biau.org/events/ for conference details and registration information.  “Attendees will learn how individuals with brain injury build connections. Topics will include: Social Skills, Rehabilitation Process, Cognitive Strategies, Technology/App use, Caregiver/Survivor Lessons, ADA, Social Security & Patient Rights, Classroom Executive Functioning, Concussion and Return to Activity/School”

UTAH GRIZZLIES EPILEPSY AWARENESS HOCKEY GAME

Date: October 21, 2017

Time: 7 pm

Place: Maverik Center – West Valley City 

Tickets: $10 – $20

You can get your tickets at www.epilepsy.com/utah . “The attendees will be receiving epilepsy information throughout the evening, and the team will be wearing and auctioning the jerseys specially made for this game. Mark your calendar and bring your friends.”

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                              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)

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ACTIVITIES 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)

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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)

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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.

The Value of Work

1981, Mark working on an electrical meter

What value do you place on work? Some spend their lives trying to get out of it. I have learned it is worth more than the wage earned.  On Sunday I shared the difficulty Mark and I had adjusting to the realization that his twelve year successful career as an electrician had abruptly ended with a car accident that rendered him wheelchair dependent in 1991. He went through Vocational Rehab testing and they helped him get a job at Discover Card. However, that ended eight years later when they closed down the department he worked in.

We were introduced to community based adult work and activity centers, also known as work/activity day programs. This service generally cost between $40 and $100 a day depending on one’s geographic location. It was the first time I’d heard of paying a daily fee to make money and it seem especially senseless when that daily fee far exceeded the jobs income. It took years for me to understand the reason for the fee, partly because I didn’t believe the level of help Mark needed was worth $40 – $100. It was also tough to accept that a successful master electrician now needed help to do a simple job. Most individuals in this kind of program haven’t had previous work experience and need continued encouragement to stay focused on the work task given and constant reminders of how to do the job correctly. It was mentally and emotionally challenging for me to see Mark in this kind of setting, yet his physical limitations made it necessary. Mark was anxious and willing to do whatever he could to get out of the house and go to work.

How could we pay for such a service? Many participants receive funding through state and local agencies. Although the funding available varies in each state, most offer Medicaid waivers for individuals with specific needs. Mark didn’t qualify for Medicaid and was put on a long waiting list with the State of Utah Division of Services for People with Disabilities (DSPD) for a Brain Injury Waiver.

While on the waiting list I negotiated with a work/activity center which allowed Mark to work there. I promised that if they had his work set out for him, he’d need little supervision and no encouragement to get the task done. He is very self-motivated, but would need help getting into the bathroom and lunch. He worked there for years while on the DSPD waiting list cleaning used VHS tapes and DVDs and packaging them for resale. That job ended when the movie rental stores became obsolete due to Netflix and other like programs to see a movie at home.

After fifteen years on the waiting list, Mark received a TBI waiver and started work at Ability and Choice Services (ACS). They are also a community based work/activity center. He has done contract assembly work for the past six years putting drip system sprinkler kits together, scrapbook kits, assembling packaging boxes, filling them and preparing them for shipping. They have also had jobs assembling conference bags and processing returned products. Currently they have been assembling installation kits for Zaggs Invisible Shield Protector.

Mark enjoys the staff at ACS and the environment there. Since I drive Mark to and from work everyday I’ve realize how hard the staff works at making sure their clients are in a safe and clean environment. They tend to many individual needs who’s abilities widely vary. Most the clients seem happy to be there and the atmosphere is warm and caring. I appreciate the staff’s ability and knowledge in how to handle difficult situations including seizures, which Mark has occasionally due to his TBI. Unfortunately, the contract work with Zaggs is coming to an end without another contract on the horizon. In fact the State’s system of operation for work/activity day programs is changing and Mark’s work possibilities are in question once again. We won’t lose hope and know from experience that when one door closes another one opens.

Sometimes work is fun and sometimes it isn’t, but it’s always good for us. It keeps us strong physically, emotionally and mentally. It gives purpose to life. It builds self-esteem, respect, confidence and gives us something to be proud of.  It teaches us teamwork and how to get along with others. It gets our creative juices flowing as we iron out the kinks
that come along. I’ve come to understand the value of work far exceeds the wage earned.

 

What value do you place on work?

A Blessing in Disguise

There is always plenty of work to do and the holiday season is no exception. Thanksgiving dinner was wonderful, but a lot of work. After hours of preparation, there’s the cleanup. What about Christmas? There’s more preparation for parties, dinners, decorations, shopping for gifts and all of this is done after employment hours. Sometimes I wonder why we do so much. Work can be stressful, strenuous and difficult. During those times I’ve dreamed of a genie (pun intended) granting my wish for less work and more play. In my youth, I also loved to watch the fantasy comedy sitcom, Bewitched. I’ve thought how awesome it would be to have the magical ability to accomplish anything with a twitch of my nose, clap of my hands, or a snap of my finger and thumb, eliminating all the hard work.

Have you ever thought of work as a blessing? Usually I think of it as the means to provide for the necessities of life. Without work, how do you pay for, prepare for, or participate in recreational activities and vacation time? Everything takes work, including the fun times.

I didn’t realize the worth of work until after our car accident, which made it impossible for Mark to continue in the electrical career he was schooled and trained in. He dedicated twelve years to the trade and was successful, reaching the highest level as a master electrician. After eighteen months of rehab, he was anxious to get back to work. Realizing he wouldn’t be able to work as an electrician while in a wheelchair, he asked every day what he should do with his life. He said he needed to be productive to have self-worth and wanted a purpose for life. Work provides purpose.

It was hard to imagine what he could do or that any other kind of work could bring him the fulfilment the electrical field did. I tried to convince him that rehab was his job. His focus should be regaining his physical and speech abilities so that he could go back to work as an electrician. Two years passed and he continued with his rehab, having eye surgery to fix his double vision and two surgeries on his feet to correct the foot drop, which made it difficult for him to stand. He continued to ask often when he could go back to work. I hadn’t realized before how important work is for making life worthwhile. Sometimes we don’t appreciate what we have or what we can do until it’s no longer available.

We volunteered at our children’s elementary school twice a week, reading with the kids or helping with math and spelling. Mark enjoyed the kids, but sometimes they couldn’t understand him because of his speech impairment. Children are so honest and they would ask him often what happened to him or why he couldn’t walk or talk. These comments appeared to bother me more than Mark, who is accepting and understanding of others curiosity. I wanted to protect him and our own two children, wondering what questions and comments they had to endure. I was worried our children might become discouraged or uncomfortable with our circumstances so I thought it would be best if we volunteer elsewhere.

After checking into options with our church, Mark was able to do some volunteer work at the Bishop’s Storehouse posting food orders in the computer twice a week. He also went to my brother-in-law’s family music store to stamp their logo on their sheet music at Day Murray Music. He enjoyed and appreciated the opportunity to go to these places and volunteering his time, but he wanted to financially contribute to our family needs.

The next year brought two more surgeries to fix Mark’s hip joints, which were filled with calcium, making it impossible for him to bend at 90 degrees. With his sight still set on getting back to work, I heard Mark often rehearsing electrical codes or terms so he wouldn’t forget them. He wanted me to pay the fee to keep his Master’s License current, but he was willing and wanting to do any kind of work until he got back on his feet. I had a hard time envisioning him finding any kind of employment because he was dependent on me for most tasks of daily living such as dressing, transferring in/out of the wheelchair and transportation, but wanting to support his goals, we pursued Vocational Rehab.

Mark at work desk at Discover Card

The male crew in the mail room

He went through an intense week of testing. His I.Q. score was higher than normal, but his physical skills were low. The program helped place him in a part-time job at Discover Card. He did computer work recording P.I.N.’s (personal identification numbers) and enjoyed that job for eight years until they closed down the mail center. This was the appointed area for all the eight employees with special needs. They worked together with one supervisor who was trained to oversee and help each individual accomplish their job. Most of the special needs employees sorted the mail to the various departments and delivered them there. Mark worked on the computer, but because he needed help getting to and from the Paratransit bus to his desk, the restroom, lunchroom plus make sure he was stocked with the paperwork needed for his computer entries, his work desk was located in the mail room. He couldn’t do this job without the help of the supervisor. The group of special needs employees were devastated when they were replaced by equipment which sorted and delivered the mail to the various departments in 2004.

2004 Discover Card mail room crew

What do we do now? I knew it would be hard to find a job where Mark would be safe and get the help he needed to accomplish work tasks. I also knew he wouldn’t be satisfied being at home every day without work. I learned the importance of work and realize its worth is so much more than the monetary value. Work brings happiness.

Work is a blessing in disguise. We may curse it and wish we had less of it to do. I no longer dream of a genie to lighten the work load, but rather one who could help us find work for Mark. It would be nice if I could twitch my nose, clap my hands, or snap my finger and thumb and make a job appear.

On Tuesday I’ll share with you tips on how we found work for Mark.