Healthy Living

Remaining Positive After a Muscular Dystrophy Diagnosis

Remaining Positive After a Muscular Dystrophy Diagnosis

Key Takeaways

  • It is important to come to terms with your condition. It makes you take charge of your life and move forward. Acceptance is the key. Don’t settle for mediocrities, but follow your dreams and goals even with your condition.
  • Partner with a healthcare team who understands your disorder.
  • Staying active makes you feel good besides raising your spirits.

After the onset of muscular dystrophy, you might profoundly feel depressed. Yet, as time goes by, people adjust to their new situation and re-evaluate their attitude towards their condition. In some cases, people may even be driven to greater achievements after learning their diagnosis. To begin with, you adapt by finding ways to do things, for instance, you might wheel rather than walk. Coping with the disease is a good way of redefining your expectations and functions, for example, using devices to achieve certain tasks. Learn also to be accommodating such as valuing friends and family. Part of being positive may include spreading awareness through public speaking to small groups such as classmates, friends, and relatives. When you educate the community, it helps enlighten them. Why? So, that they provide supportive environments for people with muscular dystrophy condition.

Define your own destiny

It is important to come to terms with your condition. It makes you take charge of your life and move forward. Acceptance is the key. Don’t settle for mediocrities, but follow your dreams and goals. Never let your condition get in the way of living your life. You can achieve success in the face of serious obstacles.

Partner with your health care team

Partner with a healthcare team who understands your disorder. These professionals will help you overcome challenges that you continue to face and how to overcome them. Although the list is not exhaustive, it may include a neurologist, registered nurse, registered dietitian, social worker, respiratory therapist and pastoral care.

Travel

Travel for a fresh experience. There are many highly portable assistive devices for your travel to access accommodations, restaurants, and attraction sites. Mobility travel scooters can be of help in overcoming short travel. It can get you from point A to point B. Get expert advice on portability, comfort, the distance a device can travel, maneuverability, weight capacity and speed. When booking a flight, request an advanced seat selection, because certain rows in planes have movable armrests to ease transfers. Many people with muscular dystrophy are reluctant to travel because they fear the attitude of the hosts. Most sites concentrate on accessibility rather than the psychological perspective of their customers. Find out if your destination is tourism accessible. What does this mean? The accommodation should provide more than ramps and hoists. Or even better, look for dignity of delivery of an array of products like accessible toilets and a wheelchair.

Gadgets and devices

People with muscular dystrophy can use gadgets to aid them in mobility. There are even some toys and gadgets to assist you to get closer to your partner for sexual intimacy. Seek the assistance of an occupational therapist who reviews your physical capabilities and provides you with solutions about what works and what doesn't work. The therapist will assess your situation and help you identify the appropriate assistive device. What's more, there are various devices for achieving other tasks like eating.

Workplace entitlement

The fact of the matter is that you may continue working as long as your body allows you to do it. Know your rights as being physically challenged in your country. Are you getting workplace care and support? In certain countries, there acts passed to ensure you experience fair treatment at your place, for example in the UK there is the UK Equality Act 2010 and the Disability Discrimination Act. Office of the department of labor in the USA has programs that help employers find qualified applicants with disabilities.

Get employment that offers flexible working hours that enable you to attend hospital appointments. Take frequent breaks when working. Consider adjusting screen brightness when you work with your computer to help you work comfortably. Also, working from home is a good opportunity to reduce stresses of commutes. Employment is good, particularly, for your health coverage and retirement benefits. Moreover, unemployment may make you socially isolated because of less interaction with the outside world. If you have an opportunity to work, please give it your best shot - you break the stereotype surrounding people who are physically challenged.

Exercise and nutrition

Staying active makes you feel good besides raising your spirits. If you experience fatigue, cramping, or pain, perhaps reconsider moving on with the exercise. Contemplate doing activities you enjoy such as swimming and walking. You can also enroll in sports that are adapted, for example wheelchair basketball. The right amount of nutrition is essentially what you need to maintain good health. Because of weak muscles, people with muscular dystrophy find it difficult to achieve good nutrition.

Nutrition tips

  • Modify the texture and consistency of food to make it easier to pass movements.
  • Find an alternative way of preparing food.
  • Substitute food that is hard to manage.
  • With a registered dietician, strategize and plan your meals to maximize your nutrition intake.
  • Eating is labor intensive, therefore take time to enjoy without a rush.
  • Consider turning off your radio or TV while eating to minimize distractions.
  • Avoid dry food like dry fish, dry mashed potatoes, pastries, crackers, etc. or at least add moisture to dry foods such as gravy or broth.

Sexuality and love

Drugs used to treat depression may cause impotence in men. Notify your doctor so that you can change to safer and less troublesome medications to your sex life. Medications such as prednisone can delay puberty in adolescents with muscular dystrophy. Don’t be afraid to talk to a counselor, doctor (neurologist), friend, or parent to alleviate much of your concerns. Puberty is normal for each one of us and you are no exception. See a sex therapist to help show you ways of dealing with sexuality issues and how to fulfill them. Your neurologist should evaluate your respiratory and cardiac problems for the sake of your sex life. Of course, you will not have sexual escapades like you see on screen or in a soap opera, but they should be carefully planned. Identify an ideal time and condition for your lovemaking. The reality is both disabled and able-bodied people have sexual problems too.

Closing thoughts

Muscular dystrophy is a degenerative disease with considerable challenges because of progressive weakness or loss of muscle. Some people may have trouble breathing or swallowing, but medications can help in slowing the progression of the disease. Pulling yourself together and staying positive gives you a new lease of life. It is a daunting task to integrate into society and live a life of independence. It is not impossible but achievable. The world is not limited to disability. If you put the above-mentioned tips into action, you can make great progress in achieving your goals. Don't let muscular dystrophy define you. Social barriers may have more barriers than the impairment itself.