Adjusting to Life’s TransitionsLife consists of transitions both large and small. One could argue that transitions are good and bad. I would argue that life would be extremely boring if we never had...Reactions0reactionsComments0 comments
Working on Mental ToughnessI wrote an article a while back, “Staying Mentally Healthy.” In that article, I attributed a lot of my mental toughness to my circumstances. Most importantly growing up in a...Reactions0reactionsComments0 comments
My Good Days: A Resource for Financial HelpI’ve talked about the “disability tax” in previous articles. You’ll hear people who have a physical disability use this term. It basically refers to the extra expenses that are incurred...Reactions0reactionsComments1 comments
Breaking the SMA BarriersEveryone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want to talk about the barriers we put on...Reactions0reactionsComments1 comments
Extra Assistance at SchoolI was talking to a mom who has a teen with SMA. They were asking me for advice on what kind of accommodations they should be asking for in school. ...Reactions0reactionsComments1 comments
Weight: Freshman 15 to the Covid 19Today I’m talking about weight. At some point in our lives, most of us deal with weight gain. Back in college, the freshman 15 found me and during Covid weight gain...Reactions0reactionsComments0 comments
Maintaining Friends While Living With a DisabilityThis topic recently came up while talking with other writers from this page. I am very outgoing and have always loved being out doing things. Well, that hasn’t always been...Reactions0reactionsComments3 comments
What Is an Accessible Home? I have been house shopping. There is a better chance of winning the lottery than finding the perfect home that is 100% accessible to meet my needs. The trick is...Reactions0reactionsComments0 comments
The Awkward GreetingA few weeks ago Suzanne and I went out to dinner with friends of ours to a new restaurant. We arrived first and were seated. While looking over the menu...Reactions0reactionsComments0 comments
The Frustrations of Broken EquipmentWhen living with a disability like spinal muscular atrophy, we heavily rely on equipment that gives us our independence. This freedom is wonderful until it breaks. I don’t know about...Reactions0reactionsComments0 comments
Staying Mentally HealthyI’m in my mid 40’s and I find it encouraging that mental health has become more out in the open. I know living with spinal muscular atrophy has probably made...Reactions0reactionsComments0 comments
What is Your Definition of Independence?Living with a disability can make us stubborn in our ways. I know for me it’s the inability to control what my body can do. I think what we lack...Reactions0reactionsComments0 comments
Patronizing CommentsI was recently on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment that drove me nuts. She said she...Reactions0reactionsComments0 comments
Massage Therapy and SMAI wrote an article talking about the benefits I have been experiencing from stretching. I also had a long run at receiving massage therapy. Again I’m not a doctor so...Reactions0reactionsComments2 comments
Preparing For TakeoffOver the course of the last 5 years, I have had the opportunity to fly around the country. It had been some time since I had flown. I was going...Reactions0reactionsComments0 comments
The Expense of Maintaining a Power ChairI know I have mentioned this before but it’s worth repeating. Having a disability is expensive. It’s one of the aspects of the disability that is probably not thought about...Reactions0reactionsComments1 comments
Trying to Experience an Inaccessible WorldI have so many stories to tell regarding this topic. I have talked about how lucky I consider myself in previous articles. I was relatively self-dependent up until my early...Reactions0reactionsComments3 comments
The Power of ResearchFor those of us living with SMA, these are exciting times when it comes to research and FDA-approved treatments. I’ve always been someone who has tried to consume as much...Reactions0reactionsComments0 comments
Dealing with SMA in the Age of Social MediaThis article is more for parents of younger children who have SMA. There are a lot of Facebook groups revolving around SMA. I don’t actively post in these groups, however...Reactions0reactionsComments4 comments
Uncovering State ProgramsI have mentioned before that I was pretty lucky in the sense that I didn’t require much assistance for a good portion of my life. I never gave much thought...Reactions0reactionsComments0 comments