Hey everyone, just wanted to welcome everyone here, particularly new users! I’m Kevin Schaefer, one of the moderators here, and I’m happy to answer any questions you have about navigating the forums, creating posts and replying to discussion topics.
Currently we have multiple discussions going on in different forums, and new content is alw […] View
Spontaneity is definitely something most people take for granted. Although it sounds enticing it can be a hassle. When a cousin came to town and invited us to supper last minute I made it work, but I had to shift schedules and get a ride among other things. Of course I couldn’t change clothes and freshen up like most people either, but it all…[Read more]
Thank you for sharing this. I have a feeling it will strike a chord with many of us. Since I have little experience in the realm of relationships I rarely talk about it. Thanks for opening the door for discussion.
Being spontaneous sounds like an enticing idea at first thought. But then there are factors to consider before embarking on said spontaneity. Will the destination be accessible? What equipment do I need? Will I have the energy? The list goes on and on until suddenly… it’s not so spontaneous after all.
I am hopeful always because that is my nature. But I don’t want anything that is painful or has too many dangerous side effects, if th that’s the case I would rather just deal with SMA. But I am open minded. Thank you for sharing.
@Kelly and DeAnn – Finances, insurance, caregiving, life planning, etc. I’ve tried to take control, or even just learn what’s necessary, but my mom… likes to be in control, and just thinks it’s easier to do it herself, lol
My experience of disability has always been characterised by comparison. I’m the only disabled person in my family. I was one of the very few visibly disabled people in high school, university, and later in my career as a journalist. How I was disciplined at home, which school activities I participated in, my longevity in employment and now, r…[Read more]
Happy Tuesday! My latest column is about my JACO denial. Numotion is appealing the decision, so the fight isn’t over yet, but I wanted to write about “medically unnecessary” devices. Ooh, it makes me so angry!!
How do you feel about “medically unnecessary” DME devices?
Yes I get a maximum budget and amount of hours weekly. Of course, even with the “freedom” of deciding PCA wages, it’s still not a great hourly wage. It’s been so long that I can’t remember what the process was like transferring over to consumer-directed care, but the good news is that it has been so long because it has worked out well.
Good morning. I agree with you that being disabled and having to depend on others is quite a task itself every day of my life. I use an agency and the benefit of that is that they I have more of the responsibility of hiring and firing qualified caregivers although most of the time they aren’t qualified at all. It’s absolutely ridiculous of some…[Read more]
Healthcare is so confusing. It’s especially difficult when you’re dependent on caregivers. Each state has their own variation of programs as well, which doesn’t make navigation easier. Today I had my annual review to continue services. For years I’ve kept my services the same as to not “rock the boat.” If it’s not broke don’t fix it. But…[Read more]
Hey everyone. Just wanted to share my latest column with you. It’s all about quarantined birthdays, my diagnosis 29 years ago, and learning to find reasons to celebrate. Sounds a little all over the map, but I promise it makes sense when you read it!
Since writing this column, I threw a little early birthday gathering with a couple of f…[Read more]
Do you have outside nurses or caregivers at all? It’s never fun getting outside help, but definitely takes the strain off your parents. In my case I contacted the county public health office. They do an evaluation and set you up with a social worker. For my care I go through an agency where I can choose my workers. Some people do consumer dir…[Read more]
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