Patient Blogs | Multiple Sclerosis
My Favorite Gadgets for My MS
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If you live with multiple sclerosis, you probably have a collection of walking aids, assistive devices, and all kinds of gadgets. I’m no exception. I have several walkers, two scooters, braces, AFOs, and more canes than I can count.

Sometimes we feel embarrassed about using them in public, especially after we notice that piercing stare from strangers. I’ve learned to like my walking aids. But I also went through that phase of feeling embarrassed, so you’re not alone. It’s part of adjusting to the new you. I see my walking aids as my new friends that help me move around and gave me back my independence. The cooler I dress and act while using them, the less people pay attention to them. It’s all about the attitude.

My favorite walker must be the rollator walker. The rollator walker comes with a seat and an under-seat bag to store or carry your items. The brand Drive has many options available for all budgets. My next one will be the Drive Nitro Duet Dual Function Transport Wheelchair and Rollator Walker. It’s a walker and a wheelchair, all in one. A little bit pricey, but in my opinion, all worth it.

Now, my scooters, which I consider my life savers, are the best thing that happened to me. I’ve been able to join my kids while they ride their bicycles around my neighborhood or at the park, take my kids to every single Disney park out there, travel by myself, which is my biggest passion, go to the mall and shop until I drop or run out of money, whichever comes first, and much more.

I have a Pride compact scooter, ideal for going to the parks just because it’s very comfortable and the battery lasts all day long. It’s also pretty fast, and I love speed. But when I travel, I take my Atto folding scooter. It folds into a suitcase, and it’s airline-approved. It’s 85 pounds, so it’s not that light, but it separates in two parts, making it easier to handle and transport. What I like the most is that it has a long-lasting lithium battery that weighs less than 5 pounds and it’s easy to remove.

The Bioness is a functional electrical stimulation system created to help with foot drop. It’s a cuff that’s placed under the knee and sends electric stimulation to the muscles on the leg, triggering dorsiflexion. It allows your foot to clear the floor as you walk and avoid falls. I’ve had it for about 2 years, but at this point of MS progression that I’m right now, where I don’t have any movement or control of my foot and I don’t even wiggle my toes, unfortunately it’s not safe for me to use it anymore. But when I was able to, it was great to walk normally again and wear my nice sandals, since it doesn’t need to be inserted inside the shoe. Now, I’m limited to the type of shoes I can wear, sneakers for the most part, to fit my KAFO.

Speaking of my KAFO, my best friend of all, has changed my life forever. This knee, ankle, and foot orthosis is so well manufactured. It’s custom made for me, based on my current gait, considering all the components involved in the mechanism of my leg movement, and not just keeping my foot up. Therefore, this is a piece with a “dynamic” effect that allows range of motion of my ankle, as opposed to a standard AFO that restricts movement, causing atrophy.

The Neuro Vario-Swing uses a German-engineered technology developed by the company Fior & Gentz and it’s exclusively distributed in the U.S. by Equation Orthotic Technologies. It has given me my life and autonomy back. I can walk again! I can drive, go to the grocery store, go shopping, travel, and more, without needing my scooter. Also, the fact that I can conserve my energy, key to survive my busy days, by not dragging my heavy legs, makes a huge difference in my quality of life.

When it comes to my canes, I like them fashionable. I have them in different colors and with different designs. One of my favorite ones is covered in sunflowers. Self-standing and foldable canes is the way to go. They’re not only safer but easier to carry. The foldable ones can be easily stored in your purse or in the under-seat bag of your walker.

There’s an online catalog that I like a lot. They sell a variety of tools and products to help people with disabilities maintain their independence in a safe way. I learned about it through my occupational therapist. There are items like the finger loop utensils for when you have trouble holding the fork correctly, button hooks to help you button your clothes, universal cuffs to attach to different utensils, rocker knives to assist with cutting fruits or meat safely, when you have weakness in your hands, etc.

They also carry splints, braces, hand therapy devices, medical equipment and supplies, exercise machines, rehab equipment, resistance bands, dressing and grooming aids, reachers, bathing aids, transfer lifts. You name it, they have it.

If you’re local to the state of Florida and live with a disability, know that there’s a nonprofit organization called FAAST (Florida Alliance for Assistive Services and Technology) that provides an assistive technology program that includes loans, device demonstrations and reutilization, trainings, information and assistance, and a statewide financing program. You can find more information about their services and programs on their website. I used their loan service to finance some of the cost of my Bioness, and I had a great experience. They were very helpful and made the process very simple.

Living with a disability is very challenging, especially if you live by yourself or you don’t have a support network. MS can be so deteriorating, causing major physical changes and disabilities, complicating our daily lives. Getting chores done, working, moving around, preparing meals, and grooming with safety seems nearly impossible without some sort of assistance.

Even though using walking aids or assistive devices is not the ideal life anyone would like to live, it’s better than nothing. When you’re able to go on with your routines and take care of yourself, you tend to start to appreciate them. Trust me.

There´s an array of assistive technology available for every need. There are also many programs that can facilitate acquiring them. You can find the Guide to Medical and Assistive Equipment Resources on the National MS Society’s website.

I was able to get one of my scooters with funds from the National MS Society. They also contributed with some money towards a portion of the cost of my Bioness. Members of my support group have also benefited from these resources, and now enjoy the outdoors safely on their scooters.

All I know is that without my assistive devices, my life would be lot harder and more boring. I came to terms with my new condition because I deserve quality of life, and so do the ones around me. I need help to do certain things, and I own that. Understanding this took time, but once I accepted it, everything changed for the better.

Now, I’m included in my household’s activities. Now, I get to enjoy my kids. Now, I get to run errands all by myself. Now, I can go out and hang out with my friends. I wish it was different, but this is what I got. I understand that what I was before, I’m not more, and that’s OK.

To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.

 

 

 

Photo Credit: Gerardo G. Mourín / Moment Open via Getty Images

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Mayteé Ramos

Mayteé Ramos

Diagnosed since 2015

Mayteé Ramos was diagnosed with relapsing-remitting multiple sclerosis in 2015. She is a support group leader for the National Multiple Sclerosis Society, a member of the Buddy Network for Shift.ms, and has participated in programs such as the “Ask an MS Expert” series and the PBS American Portrait project. She enjoys traveling, watching tennis, collecting jewelry, and spending time with her three sons. Connect with her here.

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