Leah Leilani

Leah Leilani can’t deny the blessings that are the wonderful people in her life. She expresses her gratitude for several life changing friendships in her latest article “The Angels Who’ve Profoundly Affected My Life.” Click here to read more.
What qualities do you look for in people when making friendships? Who in your life has been the most in…[Read more]

What do you think when people describe you as “suffering” from MD or when they say you do something “despite” your disease? Do you believe that these words and the use of this kind of language is what makes people think disability is a bad thing? What phrases, language or words would you rather people say and use?
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How do you disinfect yourself when you enter your house after going somewhere?
Depending on where I’ve gone, I sometimes take off my clothes and put them in the dryer to apply heat and get rid of any Coronavirus germs. I also clean my phone and joystick with a Clorox wipe.

Have your caregivers or PCA traveled anywhere or been around people who have Covid-19? How have you handled these situations?
Of course we can’t control how our caregivers and Personal Care Assistants choose to live their lives and care for their own health but we have to protect our ourselves.  I don’t have any caregivers or PCA outside of my f…[Read more]

Have you ever had your physical therapist come to your place of work, school or home to assess your setup and possibly recommend medical equipment or products to make your life easier and more comfortable?
My pediatric PT and OT used to come to my school and home for this exact reason. It was at times awkward to have them come into my classrooms…[Read more]

During the White House Presidential Briefings, there have been not been American Sign Language interpretations. The National Association of the Deaf is suing the White House and other top government officials that refuse or neglect to interpret their Covid-19 briefings.
What do you think of this? Are you hard of hearing or deaf or know someone…[Read more]

Do you have good communication with your partner? Do you feel like communication is more or equally as important as it is in any able-bodied or disability free relationship?
One thing I love about my boyfriend is his ability to communicate calmly and clearly. I am always trying to remember to express my emotions and not hold things in. Of course,…[Read more]

Do you have trouble breathing while you eat? Does you heart rate quicken because you’re not receiving enough oxygen? Have you ever fainted while eating? Have you considered getting a Tracheotomy help get more oxygen into your lungs? What has your doctor or physical therapist recommended to help with this dilemma?

Alex Dacy, also known as Wheelchair Rapunzel recently made an emotional social media post about needing a minor fix for a part on her wheelchair only to find out that she would have to wait two months to have her wheelchair repaired.

Wheelchair users depend on their wheelchairs to achieve independence. Our wheelchair are our legs-they get us…[Read more]

Do you and your caregiver like to learn new things together? For example maybe how to apply gel nail polish or sugar waxing? Maybe you want a different style to your beard or want to try a new recipe? Do you find mastering a new skill and the trial and error that comes along with it a fun activity to do together?

As Ralph Yaniz bids farewell to Muscular Dystrophy News he discloses his future plans to promote awareness for those living with Limb Girdle Muscular Dystrophy through the LGMD Foundation. Read his newest article “A Day on the Hill: Using Our Voice’s to Lobby Lawmakers” to find out about the upcoming virtual event LGMD Day on the Hill hosted by th…[Read more]

How do you weigh yourself at home? Are you able to get out of your chair and use a regular scale? Have you invested in a ramped wheelchair scale that you can drive onto or perhaps a scale for your lift?

Do you believe a term like “ableism” should be used with caution or not? When is it appropriate to describe someone or something as “ableist?” Is it better to use this word when people are purposefully oppressing you and your rights or can it be used casually to spread awareness of the things in society that still need to be changed? Does using t…[Read more]

Humor plays a major role in Hawkin Miller’s life during both social interaction and when occasionally feeling downtrodden about his disease. Read his newest article “A Good Sense of Humor Makes my Duchenne Diagnosis Easier” to find out how he utilizes humor to remain positive and make friends.
Do you often use humor to ease social anxiety or wh…[Read more]

Have you been binge watching movies lately? How do you stream/play movies on your television?
These days, with movie theaters closed because of COVID-19, I imagine more people are streaming movies than ever before. Since I have cable tv I sometimes will watch a movie on Demand but it can get expensive. I like that Netflix is always increasing…[Read more]

How do you feel about having your Personal Care Assistant do tasks like washing laundry, washing your car, cleaning your wheelchair, etc? Do you feel like these tasks are not in their job description and therefore feel bad about asking them to help with these household chores?