March 2017 Newsletter

Missed6

NOTES FROM FEBRUARY MEETINGS

Deaf CenterBrain Injury Alliance Support Group for Adults  met Tuesday, March 14, 2017 at Sanderson Community Deaf Center in Murray.

This is a social group where dinner is enjoyed together and then games played or crafts made. All caregivers and survivors are welcome. In February, the second Tuesday fell on Valentine’s Day. We enjoyed a Panda Express dinner together and made valentine cards. Jennifer Gee and Beth Cardell do a great job directing this group. For more information call: Jennifer (801) 468-0027 or Beth (801) 585-5511


communicate Caring For the Caregivers met Thursday, February 16, 2017 at Intermountain Medical Center (IMC) in Murray. The speaker, Kim Kirkham, M.S. CCC-SLP shared Tips for Improving Communication.

Notes from caregiver, Barbara Wilson

Kim directed a helpful discussion and gave valuable communication tips. She was the perfect choice for this topic based on her profession as a speech therapist and personal experience with her dad being a TBI survivor. We appreciated her sharing information with us. Some helpful tips Kim shared: Body language is 55% of our communication. Tone of voice is 38% and the words used are merely 7%.

People will remember how they felt in your presence rather than the words you said.  Don’t have problem solving conversation when either one is tired. Have good lighting on your face and use eye contact, especially if hearing is an issue. To get their attention, use their name and move closer instead of getting louder.  Decrease background noise, if possible. If they’re in a chair, sit to the side of them. Standing in front conveys authority, not equality.

If memory is a problem, chalk or white boards are helpful for important events or schedules. Write in caps, it’s easier to read.

Repeating causes distress and frustration. Set boundaries to help you stay compassionate. Be mad at the disease and not at the loved one.


fatigueBrain Injury & Stroke Survivor Group met Thursday, February 16, 2017 at Intermountain Medical Center (IMC) in Murray. The Speaker, Dr. Jason L Smith, DC spoke on, Natural Ways to Decrease Fatigue and Improve Endurance.

Notes from survivor, Greg Nordfelt  gregnordfelt.com

Dr. Smith gave an educational presentation and slides. What we eat instantly impacts “neurodegeneration” (loss of connection between brain cells, fatigue and symptoms of aging, Alzheimer’s, etc). The same is true if we stop learning: it immediately impacts our stomach, our physical body starts to age, taking cues from our brain that we have passed our learning stage and are now physically supposed to start aging, become more lazy, tired, less active, less muscular, etc.

3 Keys to Decrease Fatigue:

  • Decrease sugar & increase protein! Stay completely away from fake sugar (it’s poison flat out!) Increase blood flow. Exercise 5 minutes as soon as you wake up!
  • Decrease inflammation. Don’t eat grains, dairy or soy. Exercise or walk (or move available body extremities) vigorously at least 2 miles 3 times a week (refer to Dr. Doidge’s 2nd book “The Brain’s Way of Healing”. This is the number one way to fight against neurodegeneration and fatigue. Exercising 2 miles generates dopamine. It also generates new brain cells.
  • Learn something new. Challenge your brain to learn new things as you age. This, along with exercise and feeding our stomach healthy protein, will release good brain chemicals and grow good brain cells.

Last, but definitely not least, five minute brain breaks per hour decreases fatigue. If you’re in a stressful time crunch, take 6 calm breaths because if you don’t, he said, “you’re going to crash”.

Dr. Smith says, “The brain and the stomach are connected. Feed both and exercise to win the daily fatigue battle.”

Thank you, Greg, for sharing your notes!


Bright Ideas

USEFUL WEBSITES:

www.caregiver.org (online webinars for caregivers)

www.tbicommunity.org (online educational programs)

www.braininjury.com (medical, legal, information resource)

www.abta.org (brain tumor education and information)

www.cdc.gov/ncipc/tbi (brain injury facts, programs, education)

www.ninds.nih.gov/Disorders/all-disorders (education for brain injury, stroke and other neurological disorders)

www.nationalmssociety.org/Resources-Support (resource for those with MS)

 www.epilepsy.com/utah and/or www.epilepsy.com (seizure education and support by state or national)

https://biau.org (resource for those with brain injury)

http://www.brainline.org (preventing, treating and living with TBI)

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

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

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


Thank you for reading

Thank you for reading. I hope you will follow this website via email to receive notifications of every new post. The “Follow” button is located at the beginning of the newsletter. However, if you want to subscribe only to a monthly newsletter, please email Barbara@UnitingCaregivers.com. I will add you to the newsletter email list and send you the link monthly.

Alison Delgado’s Story

Friday, Mark and I attended the Brain Injury Alliance Conference, which we enjoy every year we are able to attend. It increases our knowledge and awareness of those affected by the injury. The keynote speaker, Dr. Alison Delgado, was the perfect choice to kick off this year’s theme, From Surviving to Thriving. After all she completed medical school, won the Flying Pig Marathon, ran the 2013 Boston Marathon and has reached the summit of two of Colorado’s 14,000-foot peaks.

Dr. Alison Delgado has also climbed a mountain of a different kind. As a young pediatric resident, she was hit by a car while riding her bicycle fifteen miles from her Cincinnati home on October 16, 2010. This caused serious physical and neurological injuries. Her husband of only five months, Dr. Tim Delgado, who was working as an emergency department resident at the University Hospital and trained as a flight physician, arrived via Air Care. He was prepared to take care of patients in helicopters during the precious minutes between life and death, but never dreamed he’d be called to save his wife. Tim was called to provide assistance to a “Jane Doe cyclist in her 20s” during her transport to University’s trauma center. When Tim arrived and realized that the accident victim was his wife, a second helicopter and physician were summoned.

Alison, who was wearing a bicycle helmet, did not suffer the kind of traumatic brain injury normally seen in bicycle accidents. Although she suffered numerous fractures to her neck and body, her skull was intact. Inside her brain, however, the impact created significant problems. It caused a blood vessel to tear and spill blood into the space around her brain, a subarachnoid hemorrhage. The injury either led to the development of a dangerous aneurysm—a bulge in the blood vessel wall—or aggravated an existing aneurysm. The discovery of a second aneurysm on the other side of her brain suggested that a genetic abnormality had elevated her risk of developing aneurysms.

During a series of procedures while at Mayfield Clinic, the neurosurgical specialists worked to treat the aneurysm and stop the bleeding. But the aneurysm ruptured a second time, four days after Alison had returned home from the center. The set back resulted in a seizure that forced her husband to insert the breathing tube. That incident put her back in the hospital for three weeks. Dr. Mario Zuccarello, a renowned cerebrovascular surgeon, neutralized the aneurysm by rerouting the blood flow around the damaged artery and then shut off blood flow to the aneurysm with a clip.

With the worst behind her and twelve surgeries to her brain, chest and jaw, Alison was able to focus on rehabilitation and recovery. She progressed rapidly from her lowest point, when she had trouble remembering Tim’s name. They played Uno, Life and Scattergories. Using an iPad, Tim showed her photos and prompted her to search her memory for the words to describe them. Certain words, including “helicopter,” proved elusive at first. Step by hard-earned step and word by remembered word, Alison worked hard to regain her abilities. Recovery also meant daily workouts at the gym on the elliptical, weight lifting and exercises to improve her balance. At first Alison had to hold Tim’s hand to do lunges; eventually she could do them with weights.

story.delgados.workout.cnn

The Delgados exercised every day, working to restore Alison’s strength. Credit image: http://www.cnn.com/2011/HEALTH/03/05/married.doctors.emergency/index.html

Reading came slowly at first, then more and more quickly. Sometimes Alison would have trouble finding the words she wanted to say, but her improvement and determination never ceased. Her speech therapist asked her to read a medical article and then write about it. She began attending rounds at Cincinnati Children’s Hospital and by February 2011, only four months after her initial injury, she had presented two cases at bedside rounds. 

Dr. Zuccarello wouldn’t let Alison run again until after she had recovered from the surgical clipping of the second aneurysm, which he performed in early March 2011. “We are focused on one goal: getting her back to work and to where she feels normal,” Tim said. He was her number 1 cheerleader and kept her motivated. In April, Alison began working part-time and in May, she was back full-time. Alison had to make up extra time in residency, but finished in December 2012.

Alison now lives in Utah and works full-time at Summit Clinic in Park City, specializing in Pediatrics. Tim, now works in Salt Lake, specializing in Emergency Medicine. He not only saved her life twice, he took a three-month leave to care for her. He says, “There are 54 peaks in Colorado over 14,000 feet, she wants to get the last 52.”

What an inspiration illustrating surviving to thriving. I imagine the Delgado’s are awesome doctors given their personal experience of two near fatal injuries and recovery. There’s much to gain from survivors and those who support and encourage them in their recovery process. Every survivor is unique and responds to treatment in different ways. Their results are influenced by many factors, but I love to hear and read about their challenges and successes. I appreciate Alison, for sharing her story at the wonderful and worthwhile 2015 Annual Family and Professionals Conference.

Reference: http://www.mayfieldclinic.com/MC_hope/Story_alison.htm#.Vi0ssCu94dx

To read more about the amazing doctors story go to:

http://www.nydailynews.com/life-style/health/doctor-saves-wife-life-dr-tim-delgado-told-today-show-horrifying-accident-article-1.121267

http://www.cnn.com/2011/HEALTH/03/05/married.doctors.emergency/index.html

More Than a Survivor

MomDadRon

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. DadsPlaqueDuring 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.

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

Marks mom, Wanda with Katie

Eldin with Steve in the background.

Eldin with Steve in the background.

Dianne, Mick and Mom

Dianne, Mick, and Mom

Dad,

Dad

Table setting at the award luncheon

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

Mark's Family Celebration (2)

Enjoying treats and our visit  at Sundance

Weekend fun with Mom W, Karen & Mark Ray

Mark lovin his root beer

Mark lovin’ his root beer

Mark's family celebration

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