How To Be a Good FriendRecently I’ve read a few posts regarding being disabled and having friends. One was in a Muscular Dystrophy Facebook group where someone shared that their good friend is getting married...Reactions0reactionsComments0 comments
Healthy Holiday BoundariesWe all just survived a pandemic. That is no small feat! As the holidays come around, we are going to be surrounded by greater volumes of people with differing opinions...Reactions0reactionsComments0 comments
SMA Mama – Preconception, Pregnancy, and PostpartumI have spinal muscular atrophy (SMA) type 3. I’m unable to stand, walk, or transfer. I use a manual wheelchair and power wheelchair and require assistance from others to assist...Reactions0reactionsComments0 comments
Traveling With SMA: What to ConsiderTraveling is a great way to relax, learn about other cultures, and bond with your family. People with spinal muscular atrophy (SMA) and their families can still travel like everyone...Reactions0reactionsComments0 comments
Where Does This Leave Siblings?That has been the question for our family for 39 years. I’m sure every parent asks themselves that often. My experience is that we all try our best to juggle...Reactions0reactionsComments1 comments
Getting Wheelchair Accessible Concert TicketsIf you’ve ever lost out on accessible/ADA tickets to your favorite band or musician, today is your lucky day because I am sharing my tricks for always locking down a...Reactions0reactionsComments0 comments
The Importance of StretchingBeginning in my early 30’s, SMA started to take away a lot of my strength. As a result, I began sitting more and more. I mostly used my scooter up...Reactions0reactionsComments0 comments
My Journey to Becoming A Mom in a Wheelchair: Part 1Finding the right doctor. As a little 4-year-old girl, I used to pretend I was pregnant. I would stuff a pillow up my shirt, tell my mom to place her...Reactions0reactionsComments0 comments
A Scary ICU ExperienceYears ago, an event caused us PTSD. Jessie, 16 years old, was in the hospital’s intensive care with severe respiratory difficulties for 2 months. However, the hospital wanted her to...Reactions0reactionsComments0 comments
Frequently Asked Questions (FAQs) About Spinal Muscular AtrophyWhether you are living with spinal muscular atrophy (SMA) or a caregiver for someone with SMA, here is a guide to the basics of SMA. Spinal muscular atrophy (SMA) is...Reactions0reactionsComments0 comments
Building a Wheelchair-Accessible HomeAfter years of searching, I finally found a home builder for a new development that was more than willing to accommodate my accessibility needs and redesign their floor plans. So...Reactions0reactionsComments9 comments
Talking to Your Child About SMAWhen your child has a long-term illness like spinal muscular atrophy (SMA), it is normal for them to have questions. They may want to know what causes SMA and how...Reactions0reactionsComments0 comments
A Letter to My Parents: WE are Living with SMAParenting isn’t a job for the faint of heart. I live in a world full of adults living with disabilities, and I have the great privilege of seeing the amazing...Reactions0reactionsComments4 comments
Mikes New Trial For The Family - A Cancer DiagnosisIt’s now the start of a new college school year. As always, we all load up the car and take Mike back and get his room all set up for...Reactions0reactionsComments0 comments
Designing New Locker RoomsThis is part 3 of an ongoing story. If you haven’t been following along you might want to start with Part 1 and Part 2 before continuing on here. After...Reactions0reactionsComments0 comments
Working with SMA I have mentioned in a previous article that I have worked full time. After graduating college, I had a hard time finding employment at first. I was still walking at...Reactions0reactionsComments0 comments
Your Story MattersAll of us have a unique story to share with the world. And whether it’s by writing a book, starting a blog, sharing on social media, or starting a connection...Reactions0reactionsComments0 comments
The Number One Beach Accessory You Might Not Know AboutThe beach for me as someone with spinal muscular atrophy can be a difficult place. I often feel most disabled in this environment. The sand makes travel by wheelchair almost impossible...Reactions0reactionsComments0 comments
Monitoring Calories and Protein ConsumptionAfter getting my g-tube placed in 2017, food became more of a luxury than a necessity for nutrition. While my feeding tube was there to help me gain back the...Reactions0reactionsComments0 comments
Sports and Recreation: Finding the Right FitDifferent types of SMA come with different physical abilities. Some people have a mild form of the illness and can walk. Others rely on assistive devices like walkers and wheelchairs...Reactions0reactionsComments0 comments