January 2019 Newsletter

A New Year feels like a fresh start and it’s energizing! I’m a visual person so I like to schedule my activities and plan steps for attaining goals. I’ve been marking up my 2019 calendar because without a plan I wander aimlessly. Written down on paper makes it look clear and obtainable. The unknown obstacles and interruptions that life inevitably bring aren’t there to mess up the blue print. Judging by experience, I won’t get it all accomplished, but my motto is to never give up. This year marks a big one for us. Forty years of marriage, and the sixth decade marker of my existence. I haven’t come close to accomplishing what I’ve wanted to thus far in life, nor in these many years of marriage. We’re not where we thought we’d be financially, or physically. My antidote for discouragement is to focus on my life’s mission: To care for and love my family and friends. To put their needs above my wants. This takes flexibility with my daily plans. It means not being so focused on the goals I want to accomplish that I can’t see the needs of others or take time to help them. In 2019, I want to make sure this is a true statement and not an excuse for defeat. It’s tricky and not always easy to identify or decipher between a “want” and “need”.

I gain strength and clarity from others who truly understand my journey. For this reason, I’ve gathered information on this month’s support groups and therapy services offered in our surrounding area. 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 health issues. Learning from and encouraging others lightens the load.

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

I’m excited to see how this year unfolds and what it will reveal. I wish you the best for the new year.

---

FREE SUPPORT GROUPS

FOR STROKE AND BRAIN INJURY SURVIVORS AND CAREGIVERS

January 3, 2019 – Utah Valley Brain Injury Support Group 7-8 p.m. meets every 1st Thursday monthly at Rocky Mountain University of Health Profession, 122 East 1700 South, Building C, Provo, Utah 84060. For questions, please call Tracy Liu, (801) 422-9132.

January 8, 2019 – 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. For more information, please call Jennifer (801) 386-2195, or Beth (801) 585-5511.

January 17, 2019 – Caregivers and Survivors Education and Support Groups, 7 p.m. meets every 3rd Thursday monthly. This year we move to a new location at Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT 84107, building 1.

Caregivers meet on the 9^th floor, in the Neuroscience Conference Room. This year an extensive and informative Caregiver Program written by Beth Cardell, Phd, University of Utah will be taught by various members of the medical community and other experts in their field. This month Teresa L. Such-Neibar, DO Physical Medicine & Rehab will be teaching. Bring your family and friends that are part of your caregiver experience.

Survivors meet on the 9^th floor Gym. This month Kim Sieber, neuropsychologist, will present. Her topic is Mindfulness Strategies for Survivors. Please call (801)314-2086 or email Emily Redd emily.redd@imail.org

January 22, 2019 – 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 Marc Macialek, TBI survivor and life coach will present. For more information please call Ryan Pello or Annie Wallace at (801) 581-2221.

---

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

---

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.org.

Epilepsy Group for Parents, 7:00 – 8:15 p.m. Use to meet every 1st Thursday quarterly. Next meeting will be January 3, 2019 at the Riverton Library Auditorium, 12877 S. 1830 W. Riverton, UT.

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

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

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

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

Epilepsy Support Group in Logan, UT.

---

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)

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

---

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)

---

SHARING WEBSITES:

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)

---

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 it to you.

Our Ultimate Goal

By sharing our stories, tips and/or thoughts  we get a look into each other’s hearts which helps us appreciate the unique challenges each one of us face. It also helps us realize we’re not alone and points out what we have in common.

I’m grateful for all the past and present guest authors on Uniting Caregivers who have helped me reach my ultimate goal of increasing love, patience, tolerance, care and understanding. If you’d like to  be a future guest author, that would be wonderful! I believe you have something we can benefit from. If you have a thought, tip or story you’re willing to share, I’d be happy to help you publish it. If it seems overwhelming and you don’t feel like you can do it, please know I’ll be there every step of the way. Let me know if you’re interested by leaving a comment in the box at the bottom of this page or by sending an email to Barbara@UnitingCaregivers.com.

Thank you, Cally Johnson, Pamela Clark, Judy Coon, Silvia Caswell, Jamie Sorensen, Glenn Oliver, Cindy Oliver, Dianne Breitling, Julie Brown, Barbara Larsen, Deidre Pickering, Katie Ferguson, Ann McDougall, Eric Reynolds, Tim Gray, Laura Norfelt, Greg Norfelt, Rosanne Day, Chuck Ferguson, Neils Knudsen, Mark Wilson and our current guest author, Christine Scott. To revisit any one of their stories, type their name in the search bar on the home page and it will take you to that individual’s article or list of articles in some cases. I appreciate each of you sharing your unique challenges and wonderful tips which help us reach our goal of better understanding one another.

Happy New Year

Image Credit: http://www.webend.in

A new year brings anticipation for great things. It feels like a breath of fresh air or the warmth of sunshine after cloudy days. It renews our hope and gives us energy for improvement.  It brings motivation and opportunities for our success in many areas. Yet, as I reflect on my goals for 2015 and even 2014, they are so similar because life happens and things don’t usually go as I planned.

I seriously thought about not setting goals for 2016 since I seem to have such a hard time reaching them anyway. In an effort to sort out my feelings concerning this matter, I searched the web for information on New Year’s resolutions. I found many posts addressing why they are important or why they don’t work.

In my search, I stumbled across Joey Adam’s words, “May all your troubles be as long as your New Year’s resolutions.” I laughed and thought, yeah another reason not to have a New Year’s resolution.

What’s the difference between a resolution and a goal?

A resolution is “a firm decision to do or not to do something or the action of solving a problem,” according to https://www.google.com/?gws_rd=ssl#q=define+resolution

A goal is “the object of a person’s ambition or effort; an aim or desired result,” according to https://www.google.com/?gws_rd=ssl#q=define+goal

As I pondered the two definitions, I thought a New Year’s resolution is like a promise I make with myself. A goal has to be something I truly desire and not just what I think I should be doing. This gave me a new perspective on resolutions and goals and I viewed them as being different rather than similar.

All this contemplating led me to realize what a nerd I am when it comes to goals. Who else thinks about them this long and hard? I not only set yearly goals, but daily, weekly and monthly goals in both my personal and business life. So maybe I don’t need to worry about yearly goals. Could I be setting too many goals?

So much of my life is out of my control. I know that may sound like an excuse, but it’s truly how I feel. My daily direction is mostly determined by Mark’s physical and mental well-being. Our lives are so intertwined with each others by doctor’s appointments, therapy, seizures and other unexpected incidents, which always take precedence over my goals.

I want to keep this website uplifting, so I make an effort to focus on the positive, yet I experience plenty of disappointments, which is a softer way of saying failures. Most of those have to do with me not reaching my goals.

In the business world you may have heard the saying, “fail faster, fail often” in relationship to finding success. I agree with the concept that we can learn more our mistakes and when we recognize them and move on, the failures become stepping stones to our success.

I appreciate Dixie Gillaspie’s words, “the key to success is knowing that failing doesn’t make you a failure.”

So, now I feel better about my 2015 failures and hope I will remember what I learned from them. In fact, I’ve decided my 2016 New Year’s resolution, or promise to myself, is to not feel like a failure when I fail and to recognize and appreciate the lessons learned from my mistakes.

An anonymous person said, “A New Year’s resolution is something that goes in one year and out the other.” Hopefully it won’t be so this year.

As the days come and go, unfortunately so does the excitement and energy which comes from a new year. That’s why I appreciate a new month, a new week and even a new day is refreshing. With so many opportunities to start over, we’re bound to succeed. I truly believe we haven’t failed until we quit trying.

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.

Success Is An Iceberg

Time Is Your Friend

Recently, Mark stated, “Time is your friend, not your enemy.”

If it’s my friend, then why do I  feel like I’m always in a battle with it? I just don’t have enough of it to do all I’d like to do. You may be thinking, well, we all have the same amount of time! This is partially true. There is sixty seconds to every minute, sixty minutes to every hour, and twenty-four hours to every day. However, none of us knows how many years, days or hours we have in a life-time, which makes it different for each one of us.

In my youth I never thought about it . . . I was invincible and too busy planning all the things I’d achieve in a lifetime, like how many children and grandchildren I’d have, all the wonderful vacation spots I’d see, and all that I’d accomplish in my career.

At age thirty-two I was in a car accident that postpone my plans. The desire to obtain has not changed, but in a single second my direction in life took a dramatic turn. I guess I haven’t fully made peace with the change because the older I get the louder I hear the click of the clock, and see that time is rapidly passing. It seems with age, the disappointment of unfulfilled expectation grows, along with the realization that some things may not be accomplished in this life.

Since the car accident, often, when Mark is asked how things are going, he’ll say, “slow, but sure . . . but, sure slow.” This statement is right on. Every ability Mark has comes slowly, much too slowly for me and for him. However, he steadily works every day for improvement and has done so for the past twenty-two years.

He struggles to do things the rest of us do without thought or effort  like eating, drinking; brushing his teeth, combing his hair; typing or writing; propelling a wheelchair; balancing on the edge of the bed, or rolling over in bed. He has to concentrate and work hard at moving his arms, legs and feet. In other words, what most of us do without thought or effort, Mark works at and it becomes meaningful. Speaking also takes a lot of effort for Mark. Consequently, he chooses his words carefully and says a lot with just a few words.  He thinks before he speaks. A trait I’m trying to cultivate.

Because Mark’s progression is slow, his destination is sure. He knows exactly what he’s working towards and he has a plan how to get there. He feels enormous amounts of joy and fulfillment when he reaches his goals. The time and effort it takes makes his abilities so impressive. Mark is teaching me that when things come slowly they mean more.

Mark has also said, “Time is not an obstacle. When you make peace with time you can think positively about the future.”

I’ve been pondering this statement and have come to the conclusion that this is one reason why Mark is at peace with himself. He understands that time is on his side; he’s not in a race against anyone else. Therefore, he is the most positive person I know.

One day I asked Mark if he had an age goal he hoped to reach. He answered, “just as long as it takes,” another profound statement.

Mark inspires me and I know he is right. The amount of time we have isn’t what matters. It’s the striving to accomplish, grow, and improve that counts. Mark’s patience teaches me that it doesn’t matter if it comes slow, as long as it’s sure . . . and some times, it sure seems slow!

 I love being married to such a wise man.