Consumer Highlight: Alina Willing

portrait of alina I visited Alina at her home in Winona Lake, Indiana. I met with Alina to talk about her experience receiving an assistive technology evaluation and training through Easterseals Crossroads (ESC).

Alina invited me to sit in her living room and I learned a little about her life and how she came to receive services from ESC. Alina is married and has two children who are 12 and 6 years old. Alina used to teach Spanish and now works with her husband. I learned that Alina was diagnosed with multiple sclerosis when her daughter was 6 months old. Multiple sclerosis (MS) is a disease of the central nervous system. It disrupts the flow of information between the brain and the body. Common symptoms of MS are: fatigue, muscle weakness, spasticity, vision problems, et cetera.

Alina tells me that MS runs in her family. She had a great aunt who had MS. Alina lived on a reservation in Montana when she first had symptoms. She was into scrapbooking during those years and started having difficulty using her right hand to cut scrapbook materials. She went to the emergency room and they gave her an MRI scan. After the MRI showed signs of MS, she was referred to a neurologist. Alina was put on a round of steroids and a MS approved medication. She was symptom free for about 8 years. In 2010, she was pregnant with her son. During this time, she had a relapse and started having symptoms. She noticed that her right leg was starting to drag. She took steroids again, but they did not relieve her symptoms. She then needed a cane to walk.

She also started to notice trouble with her legs when driving. She told me that, “After 20 minutes of any activity, I would lose strength in my leg. I had to start lifting my leg off the gas to be able to drive.” Alina and her husband started researching ways she could continue to drive. She had heard of people driving using hand controls but didn’t know what was out there. She contacted Volvo and they told her about Superior Van and Mobility. Superior Van and Mobility is a automobile¬†dealership that sells adapted vehicles. When she spoke to Superior Van and Mobility they told her about Vocational Rehabilitation. Vocational Rehabilitation is a state agency that assists people with disabilities in obtaining or retaining employment.

Alina was assigned a Vocational Rehabilitation counselor who referred her for a driver’s evaluation. Through this evaluation they recommended hand controls and then provided training to teach her how to use the controls.

Alina then started to need a scooter to walk long distances. Eventually she couldn’t put the scooter in the car and it was getting more difficult to walk. She is now in a power wheelchair. Her minivan has now been equipped with a wheelchair ramp and hand controls.

Alina’s next challenge was losing her ability to write and type. Alina had worked as a teacher in the past, but has been working with her husband for years now. He is a dentist and they own two dental offices. She does all the accounts payable, payroll, marketing, and social media for the offices. She had been working out of her home in her basement office, but has had to move her office upstairs now that she is using a wheelchair.

When she told her vocational rehabilitation counselor about her challenges in continuing to do her work, he referred her to Easter Seals Crossroads for an assistive technology evaluation. An assistive technology evaluation is a one-on-one evaluation with consumers to determine the appropriate assistive technology to meet their needs at home, work, school, or in the community. Alina was assigned to work with Craig Burns, Assistive Technology Specialist, at ESC.

Alina told me that Craig came to meet with her to learn about her job duties alina using joystick mouseand evaluate her work area. She was having trouble using her computer mouse and he shipped her 4 different ones to try. She has now found one she loves that she can use with her left hand. She was so happy to be able to try all of them out and find the exact one that met her needs.

He saw that she was having difficulty transferring from her wheelchair into a alina on her computer at her deskchair that fit under her desk and recommended a desk that she can fit her wheelchair under. He also recommended her use a smaller keyboard as she is now only using her left hand. Due to her difficulty in typing, Craig recommended Dragon Naturally Speaking. Dragon Naturally Speaking is a speech recognition software that will allow you to access your computer with verbal commands. He recommended a good microphone which would allow accuracy in using the program. He recommended a second monitor and mounted it where it is easier for her to access. He also recommended a remote control to be able to turn on her lamp, computer, and fan in her office space. He also recommended a rolling cart for drawer space as she lost a lot of drawer space with the new desk.

Alina said she had no idea that all of these office accommodations even Alina at her deskexisted. She said, “I hate that I have to have it, but it’s such a gift.” She said, “It was so great that he even helped me set it all up and then trained me on how to use everything.” He taught her how to get Dragon Naturally Speaking accustomed to her voice. She then would practice on her own and he came back to work on any troubles she was having with the software or configuration of her workspace. Alina told me that learning Dragon could be tricky and overwhelming, but got much easier with practice.

She told me, “Craig is very open. I know I can email him if I have any problems and he will get right back to me.” She said, “I was always surprised that my neurologist never told me about all of these programs that existed. I did not know where to start. I was so relieved when I was connected to someone who had solutions to my problems.”

Alina told me that all of the changes she has gone through have been a tough adjustment for her and her family. She said, ” I hate change. I have always hated change. I have had to change so much to deal with different challenges.” Assistive technology has really helped her adapt and overcome her challenges. She has not only had challenges in doing her work, but also in her duties as a parent. She is no longer able to tuck her kids in for bed. She has a video monitor in her son’s bedroom so she can see him and also communicate to him. She has been working on building his confidence of being independent. She told me that he had written a note to himself about tucking himself in that said, “you can do it.”

She shared with me that their family is doing really well¬†while dealing with these adjustments. She told me her daughter has really learned empathy for others as she has seen her mother go through these changes. She is so thankful that the whole family has learned, grown, and adapted as she has faced these challenges. Getting accommodations to her car, office, and home is allowing her to work and be involved in her kids’ activities. She now has a ramp to be able to go out and play in the yard with the kids and an accessible vehicle to go to their activities.

I asked Alina if she had advice for anyone who was facing some of the problems she has faced and she said, “I would tell them not to be scared to ask questions. You can only learn what you are ready for, and you need to ask questions as you are ready. Learn to feel comfortable asking for what you need.”

Alina said, “I have learned a lot of lessons. I had to get over the mental fact that my disability would be what people would see when they looked at me. You don’t notice how impatient people are until you have to slow down. I have a visual disability so people give me more grace, but not all disabilities are visual. I have learned that you have no idea what others are going through.”

Alina told me one thing she was disappointed in “is that I cannot get downstairs into my beautiful office.” She has had to move her office upstairs into the kid’s play room. Now that her office space has been accommodated upstairs they will be moving the kids playroom in the basement. She said, “Everything that Crossroads and Craig did for me is absolutely wonderful. It then changed the configuration of my office. So, I now need to modify the space.” Alina will have a home modification to put a permanent door on where here new office is now located. This door with have an automatic door opener to allow her to access the space. Alina tells me she is so happy that the space has all come together even though she still wishes she could be in her basement office.

It was so wonderful to meet with Alina. We spent hours talking about her life, our mutual struggles with parenthood, and her excitement of all the accommodations coming together and allowing her to continue to work and be involved with her kids activities. Alina has a wonderful and positive spirit and I wish her all the best in everything.

 

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