Meet Alissa Patterson

A Woman with Exemplary Strength

Alissa and Kai.

At first glance her beautiful smile, captivating eyes and photogenic dog grab attention. What’s likely missed is the wheelchair 25-year-old Bismarck, North Dakota resident Alissa is seated in.

And that’s just the way she likes it.

“Don’t judge. We all have challenges no matter what we look like. We can overcome them.”

People sometimes assume Alissa has mental challenges or is incapable of having a job because she’s in a wheelchair.

Both assumptions are wrong.

Alissa is many things.

Incapable is not one of them.

She’s a daughter, a sister to six siblings, including a twin brother; a 4-H alum, the 2016 Strasburg, ND High School valedictorian, a 2019 Northern State University (Aberdeen, South Dakota) Homecoming Queen, an aunt, accomplished cook and spouse to Nathan, whom she met in college.

She’s gainfully employed and will receive a Master’s Degree in Social Work (MSW) from Ohio State University’s online program in August 2023.

“I hope to be a case manager or counselor for others with barriers to be successful in their communities. I realize my life could be so much different. I’m fortunate not to have mental health issues. I want to be a resource for those with limitations.”

Diagnosis

Alissa was a 12-year-old sixth grader when a genetic test confirmed her diagnosis: Friedreich’s ataxia (FA).

FA is a rare inherited neuromuscular condition causing progressive damage to one’s nervous system and movement problems, eventually resulting in wheelchair use. FA can also affect the heart.

It does NOT affect cognitive abilities like thinking and reasoning.

Symptoms generally begin between ages 5 and 15 years of age, although sometimes they appear after age 25.

More information at: Friedreich Ataxia | National Institute of Neurological Disorders and Stroke (nih.gov)

Reaction

“I was scared when my parents and I heard this. I remember us all crying. We’d experienced my brother Nathan, who’s 10 years older, struggle as his identical disorder progressed. I didn’t want my parents to feel guilty for my diagnosis.”

Even today she can’t imagine being a parent and having to tell a child they have a life threatening disease and may never get better.

She attended physical therapy twice weekly to slow the progression.

Alissa’s disorder was monitored regularly and she was part of several medical trials at the University of Iowa.

Neuromuscular Multispecialty Clinic | University of Iowa Stead Family Children’s Hospital (uihc.org)

Isolation

As the FA progressed during her high school years, Alissa felt isolated in her rural North Dakota community. “I sensed I was the only one who was different.”

Changes happened at home and at school.

She could no longer help her family with outdoor chores. Instead, she became more responsible for household chores like cooking and cleaning. She had to stop showing animals in 4-H and eventually quit the club.

Nathan and Alissa were the only students with disabilities at school. To accommodate them, railings were placed in hallways for her to grab while walking. Stairs were converted into ramps and because the lunch room required walking stairs, Alissa’s meal was brought to her in a separate room, adding to the feeling of extreme isolation.

Alissa had an Individual Education Program (IEP) allowing her to take notes on her iPad and receive physical therapy every week. But she had to watch classmates during gym class because there were no adaptive options. Again, extremely isolating.

She was able to maintain her strength and walk until she went to college.

Independence

Alissa bucked family preferences by choosing NSU. “I wanted to attend college where I wasn’t known as another student’s twin or ‘that girl that can’t walk.’” Other selection criteria included being far enough away to discourage going home every weekend but close enough to be able to go there on long breaks.

In other words, Alissa wanted to start anew and be more independent by choosing her own friends and hobbies. She also had to become her own best advocate and became familiar with disability services there.

At this point Alissa had an electric chair helping her navigate campus. Her strength remained and she continued to exercise regularly. In class she was allowed to do all her notes and testing online with extra time since her dexterity slowed.

She was an active collegiate. 

As a member of the NSU Honors Program she presented her thesis, “Depression and Perfectionism in People with Friedreich’s Ataxia” at the National Honors Convention in New Orleans and was a peer mentor for the TRIO program, which provides additional support for college freshmen. “I found myself caring about helping students with barriers be successful.” She was twice voted the mentor who exemplified an ideal role model.

She graduated in 3 1/2 years.

Alissa and Nathan.

Acceptance

Alissa admits accepting this diagnosis hasn’t always been easy. “I cry a lot.”

Initially when FA didn’t affect her much, she enjoyed the attention. “It gave me an excuse to not do something I didn’t want to do.”

Today she knows she’s going through stages of grief whenever she loses the ability to do something. “I get quite frustrated when I need help with simple things that used to be easy for me, like picking an item up off the floor, using the oven, or when I fall getting out of bed.”

Alissa doesn’t drive. Her reaction time is too slow. “It’s the most frustrating thing about my disability. Having to rely on other people sucks, no matter how much support you have.”

“Everyone always tells me I’m so positive. I tell them I try to be, but I have bad days too. There are days I feel sorry for myself or jealous of others. I wouldn’t be who I am today without my diagnosis, but I try not to let it define me. I try to find a way to do most things I enjoy. I have so much love and support from others. I want to use my diagnosis for good and know that God has a plan for me.”

Her favorite quotes inspire and motivate her to remain positive. “I see your pain, and it’s big. I also see your courage, and its bigger.” “Just because she carries it well doesn’t mean it’s not heavy.”

Today

She’s working full-time but lacks the energy to work out to maintain her strength. It’s her belief the disease has progressed at a quicker pace in the past few years.

In early 2023, the Food and Drug Administration (FDA) approved omaveloxolone (brand name Skyclarys)-the first treatment for Friedreich’s ataxia (FA).   FDA approves first treatment for Friedreich’s ataxia | FDA.

Alissa is eager to start taking the drug as soon as it’s available, again commuting to Iowa to see the nearest specialist. In the meantime, she continues to have her heart monitored regularly. “There isn’t much any doctor can do.”

Future

North Dakota winters can be difficult for Alissa. Ideally, she and her Washington native husband would like to live in either Arizona or Washington. She craves being outside in nature more often and deeply misses swimming, walking, hiking and biking.

Many women with FA have children and someday Alissa hopes she can experience being a mom too. However, she’s realistic about the challenges and responsibilities of caring for children, especially newborns.

There is a lot to consider regarding family planning. “I can’t be on medications that prevent this disease progression while I’m pregnant.” So, for now, she and Nathan are enjoying the aunt and uncle life.

Alissa envisions herself advocating for others because she knows how difficult it can be while appreciating how truly blessed her life has been with healthy mental health.

Wishes

As for what she wishes for other than a cure for this condition, Alissa keeps it practical: a day of shopping and getting her nails done and then adds, “I’d love to go on a vacation with my husband to Disney or on a cruise. Both of those destinations are accessible.”

Drop a note for Alissa in the comment box below.

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©June 2023 Linda Leier Thomason. All Rights Reserved.

What Happens to Special Needs Adults When Parents Die?

Do you know a special needs adult living with elderly parents? Is this person your brother or sister? If so, has your family openly and frequently discussed plans for the special needs adult who may outlive Mom and Dad, and maybe you?

 If so, your family is ahead of most.

Facts

  • Special needs is a term used to describe those who require extra support because of a medical, emotional, behavioral or learning disability or impairment.
  • The number of adults with Intellectual and Developmental Disabilities (I/DD) is projected to nearly double from 641,860 in 2000 to 1.2 million by 2030 1/
  • As of 2006, more than 716,00 adults with developmental disabilities were living with caregivers over the age of 60 in the United States.
  • Whether it’s medical, financial understanding or living arrangements, Craft LifeStyle Management can help guide families with special needs adults, especially those living with aging parents or those whose parents have deceased. We have years of experience helping families get the resources needed during this transition.

Living with You

You love your sibling with disabilities. In fact, the plan is that he or she will live with you after Mom and Dad die. Have you considered:

  • Has your disabled sibling been to your home many times so that he or she is familiar with the surroundings, or do you live in another geographical location?
  • How your existing family routine will be altered as you fit in the tasks and responsibilities of care for your disabled sibling? Are you fully aware of what Mom and Dad have been doing all these years to care for your brother or sister? What was their routine? Was it completely transparent and now understood by you?
  • What happens to your sibling if you become ill, disabled or lose your life?
  • How will care be provided and paid for?
  • Who will attend medical appointments and manage the financial and legal aspects of care?

Again, Craft LifeStyle Management can assist you in fully understanding the complexities of what’s involved in caring for your loved one with special needs.

In the meantime, set up a time as soon as possible to talk to your parents so that you are not left without critical information after a crisis.

The smallest details matter while caring for those with special needs.

This link http://www.talk-early-talk-often.com/special-needs-adult.html provides an excellent list of questions and conversations so that you and your family are prepared for the well-being of your sister or brother. Record these conversations on paper or a computer file. Let other loved ones know where this information is since you may not be the only one that needs to access it.

Loving Choice

Everyone needs to be realistic about caring for your loved one with special needs. As parents age, they may have ongoing health challenges making it difficult to consistently care for your special needs brother or sister.

Perhaps, now, the most loving thing your family can do is find a group, assisted living or nursing home for your brother or sister.

If this is the decision, please consider transitioning your special needs sibling to this home before a parent dies. It will help ease the transition to a new home environment, which makes for one less loss after death.

Legal Protections & Financial Implications

Craft LifeStyle Management ensures you have formal legal documents and protection in place for caring for your brother or sister. We help you understand the financial implications of this care.

We surround ourselves with highly qualified and trained professionals who specialize in special needs life-care planning.

We will sit side-by-side with you while subjects like this are discussed with you:

  • Special Needs or Supplemental Needs Trusts
  • Pour-Over Will
  • Last-to-Die Life Insurance Policies
  • Powers of Attorney for Healthcare and Property
  • Power of Attorney for Advocacy
  • Medicaid Gifting Powers
  • Guardianship Documents
  • Letter of Intent or Direction

Please contact Craft LifeStyle Management for assistance with making informed decisions regarding the special needs adults in your life. http://craftlifestylemgt.com/contact/

Reference     
1. Heller T. People with intellectual and developmental disabilities growing old: an overview. Impact. 2010;23(1).

More Information

https://ici.umn.edu/products/impact/231/default.html

Written by Linda Leier Thomason for Craft LifeStyle Management.

© September 2020. Craft LifeStyle Management. All Rights Reserved.

Denise Craft founded Craft Lifestyle Management in 1988 to ease the burden for families of aging, veterans, special needs adults and those in rehab during times of transition. She understands what’s involved in transitioning any individual from their personal home to their next home and to the end of life. Her seasoned knowledge of available placement services, housing options, eligible benefits and payor sources, and community resources is endless.