Layla

Recently the FSHD society put out information on Universal Design when it comes to adapting your home.

It is not enough to make your home and environment accessible but also to make it so you can thrive and be independent as possible.

Here is a video called “Universal Design is Smart Design.” In this video, she gives a tour of her home, and…[Read more]

I was still trying to put into words and process my most recent neurology appointment. I went in for pain, swelling, and numbness under my eye, which I had been experiencing for a month. I had tried antibiotics and steroids and had a CT scan of my head and x-rays of my teeth. I went into this appointment with a different neurologist than I usually…[Read more]

July 26th marks the 32nd anniversary of the Americans with Disabilities Act. Have you heard about the campaign #ThanksToTheADA? People share how the Americans with Disabilities Act has impacted their lives by sharing a post, comment, picture, or video using the #ThanksToTheADA.

How has the ADA impacted your life? What laws would you change or add…[Read more]

What is the actual cost of living with something like muscular dystrophy? Each person experiences MD differently, and the prices can differ as well.

Here are some examples of the “Cost” of living with muscular dystrophy:

• Unreimbursed medical expenses (not paid for by health insurance). These include co-pays, nonprescription medications, etc…

[Read more]

For World FSHD last Monday, June 20th, I set out to accomplish three things at the beginning of the year. I could only make two of the three goals happen, but I am ecstatic at the outcome of this year’s World FSHD Day!

I wanted to light an orange bridge in my city and organize a comedy fundraiser! My third goal was to have the city I live in…[Read more]

Recently, I was forced to stay in bed for a few days due to strep throat. As painful and uncomfortable as I was being sick, I noticed that the pain in my hip that bothered me every day was gone. My physical therapist said that my hip was able to heal and recover due to being in bed for 3 to 4 days. Every time I have a significant illness, I…[Read more]

Have you noticed any sponsors or fundraisers occurring in your area for the MDA? Do you try and go to these places that support the MDA?

Shaw’s, Star Market, and Hand-Dee_hugos here where I live all sell shamrocks to support the MDA. In addition, other larger corporations, such as General Motors, support the MDA with a $300,000 grant.

This past Monday, I celebrated World FSHD day. I had a comedy fundraiser; it was one of the most unforgettable nights of my life! I will share more about what I did and how much we raised next week, hopefully!

Recently, my friend with muscular dystrophy had the police call on her because she fell, and her neighbor believed her to be drunk or on drugs. She has a wheelchair lift on the outside of her vehicle and fell when she went to transfer. Instead of being helpful or concerned, the neighbor called the police.

Have you ever been accused of being…[Read more]

Today is the end of Mental Health Awareness month. According to a 2018 neuromuscular healthcare partnerships survey, 75% of patients experience psychological symptoms. Being diagnosed and living with a neuromuscular disease affects many aspects of life. These factors can impact mental health:
Medical/physical impacts
• Specifics of the d…[Read more]

Data has shown that stress induces muscle degeneration and accelerates age-dependent muscular dystrophy. Dystrophic muscles are already compromised, and as a consequence, they are less adaptive and more sensitive to energetic stress and changes in the ambient temperature. (https://pubmed.ncbi.nlm.nih.gov/21256839/ )

With my journey with FSHD, I…[Read more]

Mental Health Awareness Month 2022 in the United States began on Sunday, May 1, and ended on Tuesday, May 31. Patients with muscular dystrophy commonly have psychological disorders like depression, anxiety, cognitive deficits, etc., which likely exacerbates disease progression and worsens the quality of life. Both muscular dystrophy and behavioral…[Read more]

I used to buy shoes without thinking about whether they had laces. I laughed at the shoes with velcro, but now that Vans Shoes has made a pair, I am interested in getting some. But what about all my shoes with laces? I found a U-Lace company and purchased three different colors to replace my shoelaces with them. I will include a picture of my most…[Read more]

<span style=”font-weight: 400;”>I watched the movie “Run” on Hulu. I am always curious when I see actors in wheelchairs in film, and to my pleasured surprise, the actress was disabled and used a wheelchair! The movie is about a young girl whose mother has been caring for her while she is sick. Or, at least, she </span><i><span style=”font-weight:…[Read more]

<span style=”font-weight: 400;”>Delta, United, Southwest, and 18 other airlines no longer require passengers to wear masks on planes. Were you looking forward to traveling more but are now more worried about catching Covid? Do you think it was too soon, or are you ready to be rid of wearing masks? I can go either way. I have been in a state where…[Read more]

There are many forms of protein for human consumption. Protein is found throughout the body—in muscle, bone, skin, hair, and virtually every other body part or tissue. The National Academy of Medicine recommends that adults get a minimum of 0.8 grams of protein for every kilogram of body weight per day or just over 7 grams for every 20 p…[Read more]

If your muscular dystrophy affects the strength of your voice, or like me, FSHD affects my facial muscles, do you worry people will not understand you when they ask questions? Do you disclose this information before the interview, or do you go in and do your best.

I don’t normally listen to myself talk on the phone or in videos. But, I saw a…[Read more]