Mikes New Trial For The Family - A Cancer Diagnosis...It’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 Rooms...This 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 Matters...All 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 About...The 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 Consumption...After 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 Fit...Different 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
Tips on Dating with a Disability...I know every person‘s story is different, but the common denominator is the desire to be loved in most people's lives. As a disabled adult, the majority of questions I...Reactions0reactionsComments0 comments
Feeling Left Behind at Times...With most of my posts, I try to offer some kind of helpful information from my past experiences. But sometimes I feel melancholy enough where I just want to share...Reactions0reactionsComments1 comments
Finding Hope...It broke my heart when one of my good friends' daughters was diagnosed with SMA. The diagnosis was tentative, as he was waiting for a genetic result. But I know...Reactions0reactionsComments0 comments
The College Years...The time came to visit some college campuses. Mike really wanted to go to school in Florida, but the realization of his progressive disability caused him to look closer to...Reactions0reactionsComments0 comments
Building Design and Accessible Bathrooms...We left off when I was joining the board of directors at my local YMCA. If you haven’t read part one of this story, check that out first before reading...Reactions0reactionsComments0 comments
Health Resources...Living with a chronic health condition can be challenging, frustrating, and tiring. You might feel like your life is on hold. Frequent hospital stays, difficult or noticeable symptoms, and constant...
Applying for Disability Benefits...Living with a chronic health condition may make working impossible at some point. Your symptoms can affect your ability to get your job done. When this happens, you may find...
Disability Benefits...When you have a chronic medical condition, there may be times when you are not able to work. This can seriously affect your finances and your family’s. However, there is...
Workplace Considerations...Everyone deserves to be treated fairly at work, including people with chronic medical conditions or disabilities. It is not only the right thing to do – it is the law...
Managing Healthcare Expenses...Managing a chronic health condition can take a financial toll on you and your family. Costs add up quickly from medicines, testing, copays, travel, and more. But help is available...
Playing the Evrysdi Long Game...Growing up, it always seemed like there was never going to be a treatment for SMA aside from the normal physical therapy, respiratory medications, etc. But nothing was specific for...Reactions0reactionsComments1 comments
Becoming My Boyfriend’s Full Time Caretaker ...I am the oldest of 5. I had one sister and 3 brothers. Growing up in my family I was always by my mom’s side. Being the oldest meant I was...Reactions0reactionsComments0 comments
Accessible Bathrooms: Expressing my Concerns...Let’s talk about wheelchair-accessible bathrooms and stalls. I just had an “incident” recently at my local YMCA. I have been a member of this Y for over 10 years now...Reactions0reactionsComments0 comments