February 2020 Newsletter

Happy Valentine’s Day! At the start of this month I had a nasty cold which zapped my energy. While sick I took the opportunity to watch the new Aladdin movie. My favorite scene was when Aladdin surprised the princess by appearing at her balcony on a magic carpet. He persuaded her to take an enchanting ride. I related to their mutual attraction and it took back to the happy time when I first met Mark.

We were on a double date. I had been on a few previous dates with Mark’s co-worker, but when Earl invited me on this date with his friends from work I had no idea how my world would change. Of course on this night Mark was with another gal. I couldn’t stop looking at him and I caught him looking at me too. The attraction was real, and alarming since I kept wishing I was with my dates friend.

The songwriters, Alan Menken and Tim Rice brilliantly reminded me of how refreshing and magical new love feels through A Whole New World:

I can show you the world
Shining, shimmering, splendid
Tell me, princess, now when did
You last let your heart decide?

I can open your eyes
Take you wonder by wonder
Over, sideways and under
On a magic carpet ride

A whole new world
A new fantastic point of view
No one to tell us no
Or where to go

Or say we’re only dreaming
A whole new world
A dazzling place I never knew
But when I’m way up here
It’s crystal clear
That now I’m in a whole new world with you

For me, that new world started Forty-three years ago. My mind raced through the highlights of marriage and adding two incredible children to our union, and how they increased depth and value to our world. 

Now I’m in a whole new world with you
Unbelievable sights
Indescribable feeling

Soaring, tumbling, freewheeling
Through an endless diamond sky
A whole new world
Don’t you dare close your eyes

A hundred thousand things to see
Hold your breath – it gets better
I’m like a shooting star
I’ve come so far

I can’t go back to where I used to be

The phrase, “I can’t go back to where I used to be,” hit me hard and in that sentence the joyful feeling I’d experience turned to sadness. Numerous times I’ve wished I could go back, before our life changing car accident. To feel unstoppable. To feel like I had some control of the ride.

Just as I had the thought, I notice Jasmine and Aladdin were no longer steering the carpet. The songs tempo and ride slowed down and the two of them were coasting, enjoying wherever the magic carpet was taking them.

A whole new world

Every turn a surprise
With new horizons to pursue
Every moment red-letter
I’ll chase them anywhere
There’s time to spare
Let me share this whole new world with you

A whole new world
That’s where we’ll be
A thrilling chase
A wondrous place
For you and me

Mark and I never dreamed of the realm we ended up in. Most turns are a surprise, and there continues to be new horizons to pursue. It’s a chase alright and most days I wouldn’t call it thrilling. At our age, it no longer feels like there’s time to spare, but I’m still grateful we’re sharing this world together. Although it’s not the creation we anticipated, it is a wondrous place!

I gain much support and help through meeting with others in like situations. They help make sense of this new world. I’m grateful for friendships made in these groups and their encouragement helps me meet challenges. The experience and knowledge shared is beneficial and uplifting.

The purpose of this newsletter is to share information about organizations. 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 add them in the comments or email

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FREE SUPPORT GROUPS FOR STROKE AND BRAIN INJURY SURVIVORS AND CAREGIVERS

February 11, 2020 – 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 caregivers and survivors. Come join us for dinner, crafts or games this month. Bring your favorite dessert to share if you’d like. For more information, please call Jennifer (801)386-2195, or Beth (801)585-5511.

February 20, 2020 – IMC Caregivers and Survivors Education and Support Groups, meets at 7 p.m. every 3rd Thursday monthly at Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT 84107, building 1.

Caregivers meet on the 9^th floor Neuroscience Conference Room. Brainstorming, will be led by Candace Floyd, University of Utah.

Survivors meet on the 9^th floor gym. Mark Fox, MS, CCC-SLP, will be present Tools for Success. For more information, please call (801)314-2086 or email Emily Redd at emily.redd@imail.org.

February 25, 2020 – University of Utah Brain Injury Support Group meets at 6 – 7 p.m. every 4th Tuesday monthly at Sugarhouse Health Center, 1280 E. Stringham Avenue, 3^rd floor conference room, SLC, UT 84106. Sarah Gallant and Ally Cayas are over this Support Group. For more information please call (801)581-2221.

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FREE WEEKLY GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPY in Murray, Utah

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

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

Contact: Emily Redd at Emily.redd@imail.org

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FREE 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

February 12, 2020 – Provo Epilepsy Group for All, meets at 7:00 – 8:15 pm on the 2^nd Wednesday at the Provo City Library, 555 N. University Ave., Provo, UT.

February 13, 2020 – IMC Epilepsy Group for All, meets at 7:00 – 8:30 p.m. on the 2nd Thursday at the Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT Bldg. 6, 1^st floor – CR2 in the Doty Education Center.

February 19, 2020 – SLC Epilepsy Group for All, meets at 6:30 – 8:30 p.m. on the 3rd Wednesday at the SLC Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).

The Logan Epilepsy Support Group for All is in the process of looking for a replacement moderator that is as passionate about supporting their community as the last one. This Support Group will be postponed until further notice. If you have any questions, concerns, or information you would like to share, please contact Margo Thurman @ 801-445-6089

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HELPFUL WEBSITES:

http://www.caregiver.org (online webinars for caregivers)

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)

http://www.uilc.org (Utah Independent Living Center is a resource center which enhances independence of persons with disabilities)

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ACTIVITIES TO DO WEBSITES:

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

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

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

wasatchadaptivesports.org (Wasatch Adaptive Sports)

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

https://healthcare.utah.edu/rehab/support-services/trails.php (University of Utah TRAILS Program)

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

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SHARING WEBSITES:

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

https://www.loveyourbrain.com (Kevin Pearce’s nonprofit organization that improves the quality of life of people affected by traumatic brain injury)

 Two of my favorite websites. What are yours?

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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, I can add you to the newsletter only list. For this option, please email Barbara@UnitingCaregivers.com.

More Than a Survivor

Mark and I with Ron Roskos, who received the Lifetime Achievement Award.

Over twenty years ago I was introduced to Ron Roskos, then president of the Brain Injury Alliance of Utah, a non-profit organization. The group helps community members affected by brain injury by providing resources and information to survivors and their families. They also educate the community on preventing brain injuries. They have an annual conference every fall which brings together healthcare providers, educators, families and survivors. We appreciate the information given at the conference and enjoy seeing therapist and nurses who have worked with Mark in the past. It also appears to give them pleasure to see the progress Mark has made over the years. During the conference lunch they award five individuals in the following categories: Survivor, Family Member, Healthcare Provider, Educator and Lifetime Achievement. Mark was nominated for the Survivor award and we were thrilled to see him receive it. A month ago I was informed Mark was the chosen nominee and they wanted it to be a surprise for him. It was hard to keep the secret as I prepared for the celebration. I believe Mark’s survivorship has been based on the support of family and invited them to join us at the luncheon. Since Mark’s mother and sisters live out of state, it took more planning and time on their part to attend. Mark’s mom flew in from Washington to be at the luncheon and his sister, Karen, and brother-in-law, Mark Ray, flew in later that evening to celebrate with us. It made for a wonderful and memorable day. Our daughter, Katie, and I wrote the following introduction, which the presenter read when announcing Mark’s award. Mark Wilson survived a Traumatic Brain Injury due to a car accident he was in with his wife, Barbara, in 1991. He was comatose for three months and hospitalized for eight months. He is wheelchair dependent and struggles with memory and epilepsy. What a great example he is, especially to his wife and two children, who were ages seven and eight at the time of the car accident. Mark demonstrates the value of perseverance as he pushes through strenuous therapy relearning to speak, write and regaining the ability to feed himself. His ultimate goal is to walk and after twenty-three years he remains hopeful. With the assistance of a walker, his wife at one side of him and a friend at the other, he practices walking at least twice a week with determination. He’ll often look at the two people assisting him and jokingly say, “This is really hard. Must I drag you both along?” He shows burdens can be lightened and joy can be spread with a sense of humor. He enjoys making others laugh with what we call “Markisms,” like telling others that the scar on his stomach from the feeding tube he had is really a second bellybutton, which makes him “twice the man.” Despite many obstacles, he chooses to be happy by looking for the positive in every situation. He is forgiving and thoughtful towards others. Mark is patient and never demanding. He enjoys being productive and looks for ways he can help. He expresses gratitude often for what he has and for the help he is given. Mark once said, “Adversity is the exercise that strengthens the muscle of character.” His muscle of character has Hercules’ strength. He’s more than a survivor – he’s a THRIVER!

Mark and I with Mark Fox, the award presenter.

I’m so proud of Mark and believe he deserves the award for the way he cheerfully handles his difficult, unexpected, unwanted and painful life. I’m blessed to be his wife and caregiver. I loved what the presenter, Mark Fox, said after handing Mark the plaque. “I have to put in a side note…I was relatively new in my career back at the time Mark had his accident and was working in rehabilitation at what is now called HealthSouth,but was then Western Rehabilitation. Mark was at the center for a long time. He had speech impairment and you really couldn’t understand anything he said. Being a young clinician and seeing how hard they work for a long time in rehabilitation with limited progress in speech intelligibility, I really didn’t believe he could ever be verbally understood. But he was always determined. Several years later I saw him at the community rec center. They were doing exercises in the pool and he said, ‘hi’ to me. I about fell over. He was so clear. So, if you get an opportunity, I strongly encourage you to have a conversation with Mark. He is a wonderful man with a wonderful family.” In looking back, I was naively optimistic about Mark regaining all his abilities, but the determination and hard work has paid off. I’m grateful for Mark Fox’s statement recognizing his continued improvement even after his rehabilitation. Gratefully, Mark has never given up and a professional healthcare provider acknowledged it. There are only a few people who have been with us from the beginning of Mark’s traumatic brain injury and they are the only ones who can fully realize and appreciate how far Mark has come. We love to surprise them and see their joy in what he has accomplished. Life can be challenging. We don’t expect it will get any easier as we age, but it’s rewarding to overcome hardships. I’m grateful for organizations like the Brain Injury Alliance of Utah which provides support, education and shows us we’re not alone in our journey.

Marks mom, Wanda with Katie

Eldin with Steve in the background.

Dianne, Mick, and Mom

Dad

Mom, Katie, Eldin, Rosanne, Dianne, and Mick

Missing picture of Ruth and Steve who were also there, but sitting at a different table. Don, Klint, Jerrie and Jon were unable to attend due to work. We also missed our son, Christopher, who wasn’t there due to new employment which has taken him to Washington to live:-( We love and appreciate our family and their support!

Four minute video of the Survivor Award

Enjoying treats and our visit  at Sundance

Weekend fun with Mom W, Karen & Mark Ray

Mark lovin’ his root beer

After a fall ride on the Alpine Loop we enjoyed a picnic at Sundance