The Wheelchair Vantage Point: Living with Muscular Dystrophy

Muscular dystrophy is a collective term used to describe conditions that cause progressive muscle weakness, atrophy, and death. The most common and most severe type, Duchenne muscular dystrophy, is caused by a mutation in the gene that controls the production of dystrophin, a protein necessary to form and build muscles. With the loss of their body’s natural ability to form and build muscles, people with Duchenne muscular dystrophy basically waste away and statistically live up into their 20s to 30s. Aside from its known forms, there are other conditions that cause muscular dystrophy, and they affect the body in different ways.

Living with such condition can be very challenging and requires a lot of support, but most patients choose to soldier through their physical limits and live a full life. Amin Lakhani, also known as The Dating Coach on Wheels, can attest to that. He is proof that the wheelchair vantage point is not so bad as long as someone can find a way to use it to his or her advantage.

CMT Explained

Amin has Charcot-Marie-Tooth (CMT) Disease, an inherited neurological disorder affecting the peripheral nerves. CMT causes muscular dystrophy by damaging the nerves that carry signals from the central nervous system to the muscles. With communication basically disrupted or cut off, muscle activity is lessened leading to wasting over time.

Charcot-Marie-Tooth Disease is relatively rare in a sense that it affects 1 in 2,500 people. It is caused by defects in the genes that code for proteins which affect the axons, the slender projections of the nerve cell responsible for carrying electrical signals to different parts of the body. In some cases, the defects are in the genes that code for proteins which  affects the myelin sheath, the protective coating of the axons, the coating that nourishes and insulate them. In a person with CMT, the electrical signals from the brain are not properly received by the peripheral nerves. As a result, the muscles in the arms and legs fail to contract or feel pain. This is why people with CMT often experience falls or get blisters that end up being infected without them realizing it.

Charcot-Marie-Tooth Disease progresses slowly and is rarely fatal as it almost never hurts the brain. However, the physical limitations brought about by CMT make life a little challenging and fairly restricted.

Physical and occupational therapy help in managing the symptoms of Charcot-Marie-Tooth Disease. Sometimes, the patient may experience pain due to muscle cramping and nerve damage for which pain medication is prescribed.

Dealing with Physical Limits

The muscles in the arms and legs are the first to deteriorate with CMT, making the act of dealing with activities of daily living a tad problematic. Patients in the advanced stages of the disease are confined to wheelchairs and require assistance in some activities that heavily rely on the use of the extremities. Amin is at that point wherein he can no longer lift his wrists and requires assistance when getting dressed.

“I have an assistant who comes every morning at 6 AM who helps me with my socks, my pants, [and] my shirt,” Amin says.

Physical limits always come with CMT, and because it is an inherited condition, there is no known cure or way to prevent it. Like Amin, most patients choose to just face it head on. Like people with other chronic illnesses, people with Charcot-Marie-Tooth have their good and bad days, and it is in living through both those days that they find comfort in having a life to live in the first place. “No. I still got to enjoy life,” as Amin responds when asked if one should feel bad for him.

On Dating and Relationships

CMT is one those misunderstood diseases and as a result, its patients tend to isolate themselves from society. Being physically unable to move around and function normally creates a sort of anxiety among people with CMT that makes them extremely nervous at the thought of having to interact with other people. Because of this, some CMT patients elect to keep to themselves and try to convince themselves that having meaningful relationships is a luxury they can live without.

Having been diagnosed at a tender age, Amin felt the same way and because of the physical constraints posed by his ailment, he focused his attention on getting good grades and landing his dream job. Even in his staggering success in terms of his education and career, Amin still felt that his life is bleak at best and that there has to be something more to it. After mustering enough courage to ask a girl out, and then getting his heart broken, he hit rock-bottom and decided to hire a dating coach— a decision that later tipped the scales of love to his favor.

“I’d been on more than 40 dates,” Amin says, smiling. When asked how many of them lasted a long time, Amin responds, “About five.”

Going through the motions of his illness and accepting them for what they are allowed Amin to learn priceless lessons on forming meaningful relationships and believing in himself. Even though he admits that he still feels nervous around people, his outlook in life is still transformed in firm confidence that a wheelchair is not and should not be a hindrance to achieving anything in life, be it love or success.

Looking at the Bright Side

A positive mental attitude goes a long way in dealing with any chronic illness. Being confined to an electric wheelchair is not so bad when you can move around very quickly. “[I can go] 7½ miles per hour at top speed, but it’s not the safest thing,” Amin shares about his wheelchair. Aside from practically transporting from one spot to another, there are other perks that come with being wheelchair bound. Two of them, according to Amin, is getting good parking and going through TSA.

A progressive muscle-wasting disease is not essentially good news, but people dealing with such a disease have power over it by changing their perception. People living with CMT like Amin are survivors in that they proactively choose to view their ailment as something that makes their lives more meaningful and even more gratifying.

“There’s a lot of things I can do with a little bit of adjustment that makes me pretty happy, too,” Amit says. “And a lot of things that might be more challenging for me to do, I think I get to enjoy them more because it’s more of a journey to get there,” he adds.

Spreading Awareness

There is a lot more than meets the eye with people living with CMT, muscular dystrophy, or other chronic conditions for that matter. Because most of us are not aware of how certain progressive illnesses work, we tend to compartmentalize people living with them and impose even more restrictions on them. The physical limitations are just the tip of the iceberg for people dealing with any chronic illness. The submerged portion is an even bigger and more complicated myriad of emotional and psychological challenges that they are bound to face every day for the rest of their lives. While they are completely capable of dealing with those challenges on their own, a little support will still help which can be done through gaining and spreading awareness.