We Interrupt the Regularly-Scheduled Program for a Special Announcement…

Hi, friends. How’s your week been? Mine’s been really fun and a little exhausting. I travelled from NC to PA to attend rideATAXIA Philly 2019 and the 12th annual scientific symposium hosted by FARA (Friedreich’s Ataxia Research Alliance).

The ride is a fundraiser for FARA that takes place in different locations across the US every year. Right now, I’m reading a memoir, Shifting into High Gear, by Kyle Bryant, the founder of rideATAXIA. He discusses the shame and self-loathing and despair with which he grappled after being diagnosed with Friedreich’s Ataxia; he had always loved sports, and now, his future had been ripped away from him, and his abilities were deteriorating. Then…he discovered three-wheel trikes, and the rest is history. I’m eager to read of his trek ACROSS THE US on a trike. Amazing stuff is possible with some courage and ambition, y’all. Anyway, I’ll definitely post a review of that here (and buy it for several loved ones for Christmas, hehe). At rideATAXIA Philly 2019, we raised over $500,000 for FARA!

The conference was great also, but I will be honest and admit that I didn’t go into the conference feeling as hopeful this year. I’ve been told that a treatment or cure is “just on the horizon” for years now, so I was starting to feel jaded, wondering, “so…is ‘the horizon’ ever going to get here?”

We learned about ongoing clinical drug trials and new research throughout the day, and after several hours, I wondered if perhaps we could leave early; the last session is a patient panel, so it’s not crucial. But thank the Lord we stayed the whole time. As everything was wrapping up for the day, Ron Bartek, the founder of FARA, stepped to the mic to share a press release.

He tearfully read the following headline–“Reata Announces Positive Topline Results from the MOXIe Registrational Trial of Omaveloxolone in Patients with Friedreich’s Ataxia”

As he read the press release, choking on his words every few sentences, tears stung my own eyes and cheers erupted throughout the room. It was a wonderful, intimate, unforgettable moment for the FA’ers and their families in the room.

The FARA treatment pipeline as of June 2019

Though several clinical drug trials have been conducted in search of a treatment/cure, no trial has ever successfully met its endpoint. That statement is no longer true. Since this treatment was successfully shown to help FA patients, Reata Pharmaceuticals is now pursuing FDA-approval, and the medicine will be available for patients at some point in the (hopefully) near future. [Pricing and insurance will be a bear, but I’m not letting that rain on my parade.]

Of course, a treatment is far from a cure, so our efforts cannot slow down (and I can’t buy a pair of high heels just yet). But what we need while we wait for a cure, which is the enemy of all progressive diseases, is TIME; I hope this new medicine will halt or at least slow down disease progression until gene therapy is developed to cure my condition and, incidentally, many others that are rooted in a person’s DNA. Sidenote, it’s crazy to think that DNA’s structure was discovered in the 1950’s, and look how far we’ve come already. Science is awesome!

My usual readers know I’m a Christian, so maybe my last statement seems misaligned, but I don’t subscribe to the notion that science and faith are enemies. When I look at the stars in the sky on a clear night or consider how many grains of sand comprise a shoreline, I feel awed by our creator’s imagination; maybe the fact that we have DNA, unique instructions for our bodies/lives, just goes to show how we are “fearfully and wonderfully made.” Here is a statement I included with another social media post: For Lord knows how long, I have prayed, “Guide the hands and minds of the doctors and scientists in FARA to find a treatment or cure.” I don’t want to take anything away from the hard work of so many, but I do believe that God is working things to the good…in higher ways I can’t fully understand or even articulate. My heart was already full of joy and hope, but it feels like my heart grew a little bigger. Thankful to God for the people and events that led to this point and eager to see what the future holds. ♥

I’ll be spending the next few days catching up with my fellow bloggers and replying to comments. BTW, thank you to those who left thorough and thoughtful comments on last week’s post; you guys teach me so much.

Until next time, thanks for reading!

Disability Chat: Discussing the Term “Inspirational”

Hi, friends. Today’s post delves into the sticky topic of disabled people being deemed “inspirational.” Keep reading to see my thoughts on when the statement is and isn’t appropriate, how I react to it personally, etc.

I’ve met disabled people all along the spectrum between “bitter” and “happy.” Though some people fall in the extremes, I’d guess the majority of handicapped people are pretty “normal” (whatever that even means). Most days, we can find joy in life if armed with a sense of humor…despite a semi-frequent gritting of the teeth. 😉

That said, I doubt that most disabled people actually hate being called “inspirational.” Some do abhor it–just as they abhor a stranger’s offer of help, their caretakers’ inability to read minds, and/or life in general. But for many of us, it just seems odd and a bit patronizing, especially if we are simply existing in a public space. If seeing an able-bodied person shop at the mall or attend a concert or go on a date isn’t inspirational, does performing those same acts in a wheelchair, with a cane, etc. make them more profound? The implication is that it’s admirable for the disabled to live like ordinary people.

I think there are certain circumstances in which the comment makes more sense. If someone sees me stand up out of my wheelchair and walk around the gym exercising with my trainer’s help, the adjective “inspirational” seems fitting; not only am I going above and beyond most able-bodied people (i.e. going to the gym period), but I’m doing something especially impressive. Other fitting instances might include giving sermons at other churches (which requires courage already and is complicated by planning around accessibility) or persevering through intense mobility struggles to attend college courses back in the day. At least in my mind, these examples illustrate times when I’ve done something legitimately admirable.

Back to the shopping mall example–which is a setting where most of my disabled peers don’t want to be called inspirational–I can see the kind, albeit naive, intention behind the comment. In situations like that, I think the able-bodied person really means, “I admire that you don’t let your handicap stop you from living a normal life. I like that you are normalizing the existence of handicapped people. I wish you all the best.”

Due in particular to my Christian faith, the state of a person’s heart matters to me. If someone calls me “inspirational” just for going out and about, I respond graciously because I know they mean well. This issue has gained traction in the disability community; googling “disabled people inspirational” results in a flood of editorials lecturing people for using the adjective. I feel a bit repulsed by some handicapped people’s overly-defiant reactions to the compliment. Is it ignorant to call a disabled person “inspirational” when they’ve done nothing inspiring? Yes. But does the statement usually come from a genuine place? Also yes. [So is your extreme resentment unwarranted? Yes again!]

So, here’s the moral of the story: Don’t call people “inspirational” unless they do something legitimately admirable. And don’t freak out on people for saying something kinda dumb.

Below is a comical, enlightening TED talk on the subject. It’s less than ten minutes long and well worth the watch.

Thanks for reading! What is your two cents on this topic? Let me know in the comments.

Disability Chat: Struggling to Get Accommodations in College (Story Time!)

Hi, friends. In today’s post, I’ll share some background along with three stories about my struggles to obtain handicapped accommodations in college. [If I told you everything, this post would become a memoir.] This post is still quite long, but I hope my stories are entertaining enough to keep you reading. 😉 If not, the post is broken up to make skipping around easy.

A bit of background: I have Friedreich’s Ataxia, and in this context, you should know that 1) I used a walker or wheelchair for most of my college years, and 2) I can hardly write by hand.

I have heard stories of private institutions going above and beyond to help some of my fellow FA’ers. Well, I wasn’t going to (and still wouldn’t) pay tens of thousands of dollars per semester for a bachelor’s degree. Those of us handicappers who attend big state universities have less positive experiences. Dealing with bureaucrats who can’t be bothered to view people as individuals is nightmare-ish for those like me with special needs.

A Few Sources of Strife

The Location of the Office of Accessibility–Sad Joke Or Just Plain Sad?

The office of accessibility (OARS–Office of Accessibility Resources & Services) is located on the third floor of a large building with minimal parking spots, down several hallways. A school that cared for its handicapped students would designate one of its small, single-department campus buildings with its own parking lot as the OARS (of which there are several). Instead, the office was shoved anywhere it would fit. My school only cares about handicapped students to the extent to which its legally required.

Handicapped Students Get Priority Registration, But They Aren’t Really a Priority

With very limited parking available on college campuses (another enraging issue for another post), handicapped students are given “priority registration” so they can choose classes with location in mind. For example, I liked taking back-to-back classes in the same building or buildings right next to each other. However, handicapped students can only obtain priority registration if they have already been enrolled in school for one semester. In practice, this means that freshman and transfer disabled students are SOL. Because I attended classes in the fall and took off to work in the spring, I faced the same headache every year to convince them to let me register early.

For a brief time, before I needed to use a walker or wheelchair, I worked in the Registrar’s Office. I manually entered students in classes through the school’s system. My coworkers unofficially gave themselves priority registration by placing themselves in classes for the next semester whenever they pleased. So, consider this: Registrar’s Office student employees got priority registration, yet I, standing before them a couple years later, clinging to my walker and pleading with the employees for sympathy, was greeted on multiple occasions with apathetic rejection.

A Few Tales of Strife

Your Limited Mobility Isn’t my Problem

Here is one of the testing policies in OARS: after a student takes an exam, they personally deliver it (sealed in an envelope) to the professor’s mailbox. This required me to park outside the building, walk all the way to OARS with my rollator walker to take the exam, print it out and trek back to my car, drive to another building, get out and walk all the way to the professor’s mailbox (usually tucked back somewhere on an upper floor), then walk back to my car. I became exhausted every time I did it.

After doing this a few times, I asked an employee in the disability office about potentially emailing my exams to my professors; they were English exams typed in Microsoft Word, after all. God bless him–he is one of the only people in that office without a heart of stone. After I shared my request with him, he went to an adjacent room to speak with one of his superiors. When he calmly broached the subject with her, her loud, angry, snide response carried throughout the office: “Well, I don’t see how that’s possible, unless you want to deliver it YOURSELF!”

I did end up getting that accommodation, but this is the kind of spiteful attitude I’ve had to deal with many times.

A Meltdown with a Side of Irony

I once took a course in the library basement, which led to my getting a job in the same location. The parking situation is awful; for a school of almost 20,000 students along with all the faculty members, there are about seven handicap parking spots. Also, the lot is positioned on a semi-steep hill that routinely threatened to throw me off balance. A library staff member told me in my first week that I’d be “lucky” to ever secure a spot, and that turned out to be true; I was often forced to park in other lots and roll my wheelchair for twenty minutes to reach class/work, or I would park in a makeshift spot and earn a parking ticket.

One day, I drove back there to find that, once again, every spot was full. I had already acquired multiple tickets for parking in my makeshift spots, and as I prepared to do so again, the endless frustration of simply getting to class overwhelmed me that day. As I heave-hoed my walker up a hill, struggling to balance and knowing my windshield would likely have another yellow strip of paper taped to it after class, the tears welled up in my eyes. By the time I reached the basement door, feeling so helpless and angry, I was full-on sobbing. After taking a few minutes to compose myself and pretend I was fine, I walked on to my classroom.

The head of OARS was scheduled to give a presentation to our class that day. When I entered the room, a small space with about seven people there, he was showing off a nifty technological toy they now offer. My professor eyed me with concern, clearly noticing my tear-stained face and wobbly legs, but the man in charge of the disability office continued as if I didn’t exist. I took my seat and said nothing; my conversations with him in the past had been fruitless, so why bother trying to make him care anymore?

The Not-So-Temporarily Broken Elevator, or When Liability Matters More Than Human Beings

When I worked during the spring, I took a couple community college classes to fulfill random requirements for my degree (to ultimately save money). During my last semester, the only elevator in the building broke (and remained out-of-order for the next couple weeks). Of course, my class was on the second floor.

I needed to make up a test and had studied hard for it. I wound up sitting downstairs with a rep from the accessibility office. I told him that I wanted to take this test and I could walk up the stairs with some help, but he insisted that I wasn’t allowed to do so for liability reasons. I even asked if he would go retrieve the test and fill it out for me by hand if I told him the answers–to no avail. After talking in circles with the rep for several minutes, I got so upset that I fled (hurriedly rolled) to the bathroom in tears.

A girl in the bathroom gently asked, “What’s wrong?”

“I need to go upstairs, but no one will help me!” I wailed pitifully.

So this random girl came with me to the stairs, recruiting one of her friends in the downstairs lobby along the way. Thank the Lord they just happened to be nursing students. The girl from the bathroom walked with me while her friend carried my wheelchair. I took that dang test, too, and made an A.

Later, my entire class helped me walk back down the stairs–some students holding my arms for support, some carrying the wheelchair, the rest of them simply joining for solidarity.


Though I reflect on my English courses and my old professors and fellow students fondly, I’m jaded about my college experience by the constant struggles I underwent. Luckily, some bigger universities have more services for handicapped students than mine did. I feel sorry for anyone with mobility issues who attends a large school. I’m just glad I don’t have to deal with it anymore!

Thanks for reading! Do you have an experience related to disability or knowing a disabled person you’d be willing to share? Have you ever struggled with a form of discrimination or felt like you fell through the cracks? Let me know in the comments.

My History With Exercise & How It Affects my Disability

Hi, friends. In today’s post, I’ll share some of my history/experience with my disability and exercise, detailing how exercise can and can’t help me bear my condition and emphasizing the importance of consistency!

My History With Exercise

I have been dealing with the progressive symptoms of Friedreich’s Ataxia since age 11; I’m 25 years old. Over time, my balance and coordination have continuously worsened.

Like many teenagers, I couldn’t care less about fitness ten years ago. At some point, though, my parents purchased an exercise bike for our house. Though my memory is fuzzy on the details, I started riding the bike every morning before school for 20 minutes. Riding the stationary bike seemed to bolster my coordination.

A couple years later, I moved into an apartment with a friend as I began my second year of college. The complex had a gym, and since walking was only getting harder with time, I started working out in the gym. I was clueless on the subject of fitness, a fact reflected in my workout routines.

After exercising in that gym for a few months, a black man with pecks as big as my head approached me during a workout. He introduced himself, explaining that he was a personal trainer and wanted to work with me. [He later told me that he had noticed something “off” about me and wanted to help, since he has a heart for the mentally and physically disabled.]

This photo is over four years old…man, time flies!

Fast forward six years–I have been training with Tobias, who now feels like an old friend, ever since then. In that time, I progressed from walking unassisted to walking with a rollator to using a wheelchair; however, I’ve also gained a wealth of information about exercising with machines and/or my own body weight. I’m also the most physically fit I have ever been.

What Exercise Can & Can’t Do for my Disability

My disability is both genetic and neuromuscular, so I cannot do anything to prevent deterioration of my coordination. You could say that the balance part of my disability is “set in the stone,” hence our relentless efforts to find a treatment and a cure. (Consider making a donation)

I have found, though, that exercise combats other parts of the disease. First and foremost, exercise keeps me physically strong. Having toned muscles rather than atrophied muscles affects almost every part of my daily life. With atrophied muscles, even the most mundane tasks like using the bathroom would be difficult. With toned muscles, I can lose my balance and fall, yet I’m able to scoot to a grab bar and pull myself back up. Just a fact to put this in perspective: when many other FA’ers fall, they are stuck on the ground until a caregiver or 911 comes to help them.

Hey, look, it’s me with the red face as described below 😉

Exercise is also good for my heart. FA patients experience cardiomyopathy, the weakening and/or thickening of the heart muscle. According to the latest test results, my heart is alarmingly thick, yet it beats like an ox. All these years, I’ve been exercising my heart muscle right along with the other muscles, and it hasn’t been a walk in the park. There are times when I’m halfway crying during the workout; it hurts for something thick to contract quickly, repeatedly, for minutes at a time, not to mention the ridiculous effort required even to hold my trainer’s hand and walk across the room.

I am straight-up ugly when I work out–face red as a tomato, hair pulled back unceremoniously, mouth agape and panting, possibly snot or tears on my face. But this is what it takes…just to deteriorate at a slower rate.

The Importance of Consistency

Consistency is key to this equation. If I skip a few days, my body becomes sluggish, and the next time I work out, I’m already struggling with things I could do the week before. I sometimes have a dark chuckle and think, “Dang–if only others were as committed to their jobs as you are, FA!” It’s like pouring water continuously in a cup with a hole; I have to make that metaphorical pouring my lifestyle, or the metaphorical cup will be emptied quickly.

Life is good!

But what’s truly dark is to contemplate where I would be if I never worked out at all. Would I be in much worse shape because my muscles atrophied? I’m grateful that I don’t know. My crossing paths with Tobias had to be part of God’s plan.

Given the depressing tone of this post, I want to end by saying that while I have my epic-breakdown-pity-parties from time to time, I’m blessed in many ways, so I am joyful overall. 🙂 But exercise is crucial for my health and happiness!

Thanks for reading! Are you disabled, and/or do you exercise? Let me know in the comments.

Addressing Hopelessness in my Disabled Peers with Spirituality & Productive Activities

Hi, friends. Today’s post is inspired by my peers who also have disabilities (using the term “inspired” loosely). I will address the hopelessness I have seen in recent times then provide some reflections on spirituality and suggestions of productive activities disabled people can do.

If you think most disabled people are like me–joyful despite the circumstances (not always but most of the time), sure of myself and my purpose in life, happy overall–I’m sad to say that you are mistaken.

This video is super relatable to wheelchair users and laugh-out-loud hilarious. The video, which highlights inaccessibility in cities, is linked to his name in the paragraph below.

Most disabled people with some level of notoriety, such as Zach Anner, share my positive outlook; it is truly inspirational to see a person with more obstacles than most people grabbing life by the horns. But there are so many other disabled people who are hopeless, bitter, and/or directionless.

I felt compelled to write this post after three disabled peers expressed their hopelessness on social media in a 1-2 week span.

Three Disheartening Exchanges

One person asked what other disabled people do with all their free time (many of us don’t work). I felt discouraged by the amount of responses advocating unproductive activities like “play video games” and “Netflix.” Sure, those things aren’t bad in moderation, but I can’t imagine sitting on a couch and consuming entertainment all day, every day.

Another stated that their job is the only reason they have to live and asked what others’ reasons to live were. That is depressing.

A third person, discouraged by the recent death of a disabled friend, mused whether they should “accept that they have a serious disability and give up on life.” As if coming to terms with a difficult situation automatically goes hand-in-hand with “giving up on life.”

The Purpose of Life

Having spiritual beliefs is a key factor in feeling that one’s life matters.

As a Christian, I believe the purpose of life is to spread the good news. God sent Jesus Christ as a human like you and me to understand our struggles and die to redeem humanity’s sins. We have been called by God to live into His love and grace by becoming the hands and feet of Jesus in the world–serving others, sharing God’s love, living in communion with God and our brothers and sisters so we can become better people.

The difference between my worldview and the ones I shared above seems abundantly clear to me; I actually know why I am alive. That knowledge sets my eyes on things outside of myself, which helps me deal with the tough stuff like self-pity.

Productive Things Disabled People Can Do

Aside from knowing why one’s life matters, my best advice for grappling with feelings of hopelessness is to engage in productive activities that give one a sense of accomplishment.

Start a Blog, YouTube Channel, Etc.

Produce content, build a following, interact with a community. Trust me when I say that if a person starts building their presence online, they will have PLENTY to keep them busy, yet it’s so rewarding to see hard work pay off.

Exercise

Disabled people tend to make excuses (and flounder in self-loathing), but the buck stops here because I use a wheelchair and still exercise. It doesn’t matter if the workout isn’t rigorous or if it seems pitiful to an able-bodied person. It doesn’t matter if one has access to a gym or can only do home workouts. Just do something! My body AND mind always feel better after a work-out!

Write/Draw/Craft/Etc.

Create something! It could be anything–a poem, a story, a drawing, a painting, a scrapbook, a collage, jewelry, graphic designs, Pinterest crafts, etc. Expressing one’s self through art is fun. Art gives people an outlet for their thoughts and feelings, takes up time, and leaves them with a final product, which induces the feeling of accomplishment.

Conclusion

When I took a health and wellness survey through my (not religiously affiliated) health insurance company, spiritual health comprised a significant portion of overall wellness. I’m beginning to see why spiritual beliefs or a lack thereof can influence a person’s mental state. Feeling hopeless comes easily if life has no real meaning.

Disregarding spirituality, the activities I listed can help with feelings of hopelessness because each of them requires a person to do something and reap some reward for it. In my experience, NOT accomplishing things is a primary contributor to feeling hopeless.

Thanks for reading! What do you think of what I said about spirituality and/or productive activities to boost one’s outlook on life? What would you add to my list of activities? Let me know in the comments.

Disability Chat: Feeling Like a Spectator of Life

Hi, friends. An acquaintance of mine who also has FA posted an article on her blog about adjusting to her scooter. I related to her experiences so much that I immediately hatched the idea for this post.

In her post (available here), Kelly talks about her first time at the mall with her scooter. She explains that she struggled to navigate her new device around all the obstacles in stores. She spent the most of the trip lingering around the entrance of stores while her friend shopped, too frustrated to keep trying. At one point, she snapped on an employee who offered her assistance then burst into tears.

My eyes welled with tears as memories flashed through my mind–memories from the pre-wheelchair days when I, too, lingered on the outside.

I had this feeling an infinite number of times in high school and early college. There have been so many instances where I felt like a spectator of life because of my disability–sitting on the sidelines figuratively and/or literally. Here are two examples–

Left Out of my Own Trip

Near the end of my senior year in high school, a few friends and I went to the beach for a celebratory trip. [Don’t worry; my mom came, too.] When we all went out to dinner the first night, one of my friends ordered a crab sandwich; she was surprised to see the crab still shaped like a crab when the order arrived. So naturally, she wanted to throw the already-cooked crab back into the ocean…

The beach has always been tough for me to navigate because shifting sand + poor balance= disaster. Darkness is also hard (I have to watch my feet to take the correct steps). But everyone insisted on going over to the beach to throw the crab back after dinner.

All of my friends and my boyfriend left me at the house to play on the beach at night and have fun without me on my own senior trip.

Left Out of the Party

Fast forward a couple years to the early days of college–

Parties often presented obstacles; they do take place in the dark, after all. One night, I rode to one with a few friends. When we arrived and parked, my friends jumped out of the car and started walking across the uneven front yard in the dark. I awkwardly called out, “Hey, someone help me!” And one of them begrudgingly returned to walk arm-in-arm with me towards the backyard.

When we got back there, countless people stood in small circles, drinking and mingling. My friends immediately merged into the crowd and left me at the gate. I knew that I couldn’t walk around the backyard without falling, so I crept along the outside of the house and used that to make my way to the backdoor, attempting to appear nonchalant the whole time. I got inside and found my way to a couch.

For who-knows-how-long, I sat there alone. Some party, huh?

Final Thoughts

In both instances, a person might think my friends were jerks. I don’t think they were being cruel so much as just unempathetic. In both scenarios, a person could neglect to consider how I feel because they don’t know what I go through. Also, many people are just too busy thinking of themselves to think of others.

If you have a disabled friend or family member, go out of your way sometime to include them in an activity or trip. It is nice for a disabled person to not always feel ignored or like a burden!

I have tons of stories in my memory bank for various subjects, so let me know if you found this format entertaining!

Thanks for reading! Have you ever felt excluded? Do you share your kindness with a disabled friend? Let me know in the comments.

Handicap-Approved Supplies to Enhance Home Workouts (With Exercise Suggestions)

Hi, friends. Though I love using machines in the gym to strengthen my muscles (especially as a wheelchair user), I workout at home a lot, too.

In this post, I’m providing a list of handicap-approved supplies that can help you get started with working out at home. If you’re not handicapped, you can probably amplify these suggestions!

Obligatory Preface–I am not a doctor or a physical trainer. I learned most of these exercises from my trainer. Also, I apologize in advance for the abundance of made-up names for exercises. 😂

Yoga Mat

I do a lot of exercising on the floor. You can’t fall far if you’re already on the ground! Since some of my back bones protrude, some exercises hurt my back when attempted on the bare floor, but a (thick) yoga mat cushions my weight and enables me to do a range of exercises without any bone grinding.

Here are some exercises that only require your body and a mat:

  • Leg Raises–lie on back, put hands under butt, lift legs as high as possible, go up and down (a 90 degree angle from the floor to your legs is ideal, but some days, I can only get to 45, hehe)
  • Crunches/Sit-Ups–lie on back, sit up at either 45 (crunch) or 90 (sit-up) degree angle to floor, lie back down and repeat (I like to lie completely horizontal and reach down to touch my toes when I sit up–a stretch and an exercise in one!)
  • Opposite Arm-Opposite Leg–lie on back, lift left leg and right arm into air and try to touch hand to foot, go back down and do the same on other side, repeat (the more of these I do, the less capable I am of touching hand to foot, but it’s the effort that counts!)
  • Push-Ups–these are self-explanatory, right? (I can only use my arms for these, but that still hurts!)
  • Side Leg Raises–lie on right side, lift left leg into the air up and down in a sideways motion, repeat on other side (I have to hold my leg with my hand but concentrate on using my leg muscles to do the lifting; otherwise, my leg shakes all over the place, haha)
  • Hamstring Lifts–lie on stomach, lift one leg in the air as high as possible and bring back down, repeat on both legs (this one kinda hurts my lower back, but I know it’s due to the muscles back there being weak…this one is crucial for a wheelchair user!)

Dumbbells

Dumbbells can be used for several exercises, particularly for arms and chest. Dumbbell exercises also challenge my core muscles because I must maintain my balance while using free weights. I use sets of 5’s, 8’s, and 10’s in my home workouts.

Here are some exercises that only require your body and dumbbells:

  • Curls–grab dumbbells, extend arms by your side with palms faced upward, lift weights up and lower back down, repeat
  • Sideways Arm Lifts–grab dumbbells, extend arms by your side with palms faced inward, bend elbows slightly, lift weights out and back down, repeat (if you look like a bird with wonky wings trying to fly, you’re doing it right!)
  • Lifts Over Head–grab dumbbells, push weights upward towards the sky and lower back down, repeat (be careful not to drop them on your head and/or face!)
  • Push Outs–lie on the floor on your back and grab dumbbells, push the weights out and bring them back down, repeat (it’s the same motion as a push-up but reversed)
  • Weighted Crunches–lie on the floor on your back and grab one dumbbell, hold the dumbbell with both hands and prop the weight on your stomach, do crunches

Grab Bars

Grab bars enable me to do exercises that involve standing, and since I want to improve on heart and vascular issues and really work my leg muscles, grab bars are a huge help. Able-bodied people could likely do these with stair rails or even with no rails/bars at all.

Here are some exercises that only require your body and grab bars:

  • March in Place–stand in front of grab bar and hold it, march in place and make sure you’re lifting your knees as high as you can (a good one for people with extreme physical limitations but probably too easy for the able-bodied)
  • Squats–stand in front of grab bar and hold it, squat and stand back up, repeat
  • Step-Ups–hold a grab bar with each hand, step up to the next stair on right foot and lower back down to left foot, repeat on each side (one of the hardest for me–it gets my heart pumping!)

Strap-On Weights

(Image from Valeo Fitness)

I put this one last because it’s the least necessary on the list. Strap-on weights mostly serve the function of making exercises I’ve already mentioned harder. If you’re able-bodied and want to ramp up these exercises, or if you’re disabled but want to get stronger over time, strap-on weights are great. Most of the labeling on my pair has rubbed off with age, but I think they weigh 2-3 pounds each.

Strap-on weights can enhance many exercises named in this post, including but not limited to:

  • Leg Raises
  • Opposite Arm-Opposite Leg
  • Hamstring Lifts (I use strap-on weights with this one every time–can’t let those back leg muscles atrophy!)
  • March in Place
  • Step-Ups

You don’t need a gym to workout! Just a few supplies can open the door to a world of home exercises.

Here’s a typical home workout for me:

  • Stretch & warm up
  • 10 leg raises
  • 10 side leg raises per leg
  • 10 hamstring lifts per leg
  • Repeat all for 15 reps each
  • Repeat all for 20 reps each
  • Stretch some more before getting up and in my wheelchair and rolling up to the stairs
  • 10 step-ups per leg
  • 20 curls w/ 5’s
  • 10 sideways arm lifts w/ 5’s
  • 15 step-ups per leg
  • 15 curls w/ 8’s
  • 10 sideways arm lifts w/ 8’s
  • 20 step-ups per leg
  • 10 curls w/ 10’s, 10 curls w/ 8’s, 10 curls w/ 5’s (aka THE FINAL PUMP-UP)
  • 10 sideways arm lifts w/ 8’s (still working up to 10’s)

Thanks for reading! Do you like these tips? How do you stay fit? Is there a more official name for some of these exercises? Let me know in the comments.

My Disability Experience: Body Temperature

Hi, friends. Do you ever have weird body temperature issues? Are you always cold or always hot? Do you have certain body parts that get very cold or very hot? Let’s discuss!

Overall Body Temperature

My overall body temperature is average, though my hands and face are usually cold. What’s odd about me is that my legs and feet are freezing cold almost all of the time, even with socks and pants. I have a neuromuscular condition (Friedreich’s Ataxia), so I guess my nerves have a tough time making the trip down to my toes.

My body seems to be used to this, so I rarely feel discomfort in my legs during the day. Actually, I’m often taken aback by how cold my calves feel when I reach down and touch them. Thank the Lord for space heaters! I have one at work that I sit right next to my legs.

How Body Temperature Issues Affect my Sleep

When I go to sleep, I have to bundle myself in a ton of covers because, when I’m in bed, the coldness of my legs bothers me tremendously. I then lie there for several minutes with my legs pressed together; I can’t fall asleep until they start warming up some. I yank up the covers in addition to draping a shirt over my face to get my face warm.

When I wake up (usually 4-5 hours later), my legs feel the opposite sensation–so warm that it’s uncomfortable, like they’re burning. After I use the bathroom, turn on my overhead fan, and come back to bed, I lie on top of the covers and allow the fan to cool down my legs. After a couple minutes, I flip over and let the fan cool off my calves. I usually crawl under the covers and fall back asleep afterwards, but if I can’t fall back asleep quickly, I end up in this unwinnable limbo where my legs (or my whole body during summer) are hot, then cold, then hot, then cold as I shift positions and pull covers off and on again.

Even when I fall right back asleep, my leg temperature dictates how the rest of the night goes. If my legs are pressed together instead of separated, I will wake up again sooner because my legs will heat back up faster.

Thanks for reading! Let me know about your experiences with body temperature issues in the comments below.

My Disability Experience: Falling

My Disability Experience: Fatigue

Self-Improvement from my Disabled, Christian Perspective

Hi, friends. I have read at least 25 posts about New Year’s resolutions this year, and I feel inspired by your words. Of course, I should expect no less from the community of lovely, intelligent, honest people here.

In various ways, many of you made a poignant point–we should reassess how we think of New Year’s resolutions.

What Is Self-Improvement?

For most people, New Year’s resolutions revolve around self-improvement (or “bucket list” goals). The average list of resolutions might read:

  • Cut down on sugar
  • Eat more veggies
  • Start using my gym membership (lol)
  • Save up for a certain trip
  • Try a new hobby
  • Do more of (insert productive task like reading or cooking)

These are good goals. But in contemplating the idea of self-improvement, the question arises–how does one actually define self-improvement? Are there ways of improving the self that delve deeper or reach farther than “living my best life?”

Disabled Self-Improvement

Being disabled makes the concept of self-improvement interesting.

On the one hand, I’m thrown into a situation where I can fight or lie down in defeat. In practical terms, I can exercise frequently (despite how hard it is) and maintain muscle strength despite my deteriorating coordination, or I can decide to do nothing while using my condition as the justification, atrophying into an immobile sack of potatoes. My choice to fight requires a lot of self-discipline, which is the incentive needed for most resolutions. I already have that trait because of my long-term response to the cards I was dealt in life. [Obligatory side note that I do not always apply that trait to every area I should, haha.]

On the other hand, I must grapple with the fact that my condition will progress with time. Year after year, people look to make the next one bigger and better, while I know things will only get tougher year after year, despite the fact that I’m just 25 years old.

I’m in a weird spot–not needing one of the most common resolutions (Start Exercising) yet knowing self-improvement only goes so far for me. But here is where my faith plays into the picture and gives me a fresh perspective on the whole idea of New Year’s resolutions.

Christian Self-Improvement

Christian self-improvement is almost an oxymoron. Self-improvement is all about control, but discipleship in Christ means relinquishing control to walk in Jesus’s footsteps and trust God.

This year, I want to make resolutions that improve the self in a Christian sense with habits and activities that draw me closer to God or serve humanity, His beloved creations. In the Christian sense of self-improvement, my disability is irrelevant.

The trait of self-discipline I referenced earlier has also helped me form the habit of reading scripture consistently (though the magnetic force of the Word drawing me back again and again can’t be overestimated). Once again, a popular resolution–Read the Bible–doesn’t apply to me. I must push myself in other ways to seek the will and heart of God.

Here are a few of my 2019 resolutions so far:

  • Pray before getting out of bed in the morning
  • Don’t be afraid to talk about my faith with non-Christians
  • Donate $100 or more to a charity at least once
  • Speak to strangers more often
  • See the needs of people around me
  • Swallow sarcastic or hateful comments
  • Start compiling a resource page on my second NT re-read, perhaps listing predominant themes, connections between different books, note-worthy verses, etc.

Thanks for reading! Do you have some resolutions that you’d like to share or suggestions for my list? Let me know in the comments.