Hey, Ryan!  Yes!  I can definitely relate to this.  I get flare-ups of redness, pain and dryness whenever my sleeping position has been consistently exerting too much pressure on the outer curve of my ear. I don’t know of any topical treatment (although I’m sure a healthcare provider could recommend something), but what’s worked for me is… Read more

Hi, all! I wanted to offer a bit of advice regarding hotel room accessibility. This winter, I spoke with a manager at one of the Hilton hotels here in Wisconsin. I explained the obstacles that travelers often face when they use a hoyer/transfer lift and the bed is on a platform rather than an open frame. She explained to me that she has… Read more

All I can say is that I always encourage everyone to live the very best life they can.  Echoing what Kevin says below:  we all have different perspectives to share.

Have a wonderful weekend, everyone! Get out and enjoy the beautiful spring weather. 😊

We grow and evolve from the hardships we face in life, as well as the joys we feel.  I would not be the person I am today without SMA — it is part of me, and I don’t think there are many parts of me that are bad.  Okay, mayyybe my cooking skills.

Living with SMA has helped me become strong, compassionate, resilient, and creative.  Some of my… Read more

Hi, DeAnn!  I’m happy to hear you’ve found some tools to make applying makeup a little easier — do you have any other tips to add?

The hairspray I’ve found with the push-forward nozzle is Tresemme.  I know it might sound strange, but I can’t push directly downward like what is typical of most hairspray cans.  With this one, I can sort of curl… Read more

Hey, Halsey!  I love hearing about hair salon experiences because that seems to be a common obstacle for us!  And, the routine you describe sounds like a really awesome solution.  🙂

Hey, Kevin!  I enjoyed this column very much and I especially appreciate how you drive home the notion that experiencing  progress makes the time, effort and commitment all worthwhile.

Does your aquatic PT take place in a pool with warm water?  I used to do aquatic PT from the time I was a toddler until the end of high school, but my therapist… Read more

Too funny, Ryan! 😀

I enjoyed this column and I think it’s great that Kala shed some light on unconventional approaches to dealing with some of the tag-along issues of SMA.  I can relate to her description of the headrest causing problems with headaches and migraines. While I don’t use my headrest throughout the entire day, I do use it to take breaks if my… Read more

I think it’s really beneficial to listen to our bodies and know our limits (this goes for everyone, actually). But, especially with SMA and being mindful of our fatigue level.  Over the years, I’ve learned really some tough lessons about this.  There were times when I took on far too much (working long days with poor sleep quality at night) and… Read more

Haha!! 🙂  I can’t blame you, Kevin!  I can relate to what you’re saying.  I tend to be cautious when I’m around people who are sick. My family and friends give me a heads-up if we’re planning to get together and they’re feeling under the weather. They usually leave it up to me because they know if I get sick, it’s a longer recovery period and… Read more

I’m the same way with the sanitizer, DeAnn!  When I hear people say things like, “Oh it’s just a cough”…I sort of cringe because I don’t want to take the risk.  🙂

That is a really good point, Ryan! 🙂

Hi, Kevin!  I loved reading this piece! I think the discussion of caregiving topics is always super interesting.

 

One question for everyone — do you find it challenging to avoid getting sick when you’re exposed to many caregivers?  What strategies do you use to reduce or navigate the increased exposure to germs?

Beautiful words, Halsey!  I, too, look forward to reading your column! 😊

Thanks very much, Kevin!  I would also love to know what literary works others with SMA have connected to.  🙂

This discussion is not about taking “sides”. There isn’t a wrong answer. It’s merely about the type of perspective and attitude people with SMA exhibit toward living their life with SMA. How they see themselves, and how they choose to cope.

If you connect with my writing and find the meaning and beauty within it, then that’s all I intended… Read more

In my column, I acknowledge the many challenges presented by living with SMA. Is it easy? Nope. But, it’s all relative. I have often observed other people’s troubles in life and think to myself how grateful I am that I don’t have to deal with that particular issue. I choose to live with a grateful heart.

In my opinion, we must be able to… Read more

Absolutely, Brianna!  Anytime we are in a position that requires giving of ourselves, we can feel depleted.  Our cup empties a bit, right?  It’s like we have this reservoir of wisdom juice, overflowing with knowledge and experience. And we’re scurrying around to everyone, offering our resource of nourishing goodness. Meanwhile, our own hearts… Read more

Awesome, DeAnn! 🙂

Hi, Kevin!  As I shared with you the other day, I thought this piece was awesome and I enjoyed it very much. I relate to your insight, as well as Ryan’s comment.  🙂  I agree — movies, reading and other forms of entertainment are great outlets for freeing our minds a bit, and they can offer a fantastic sensation of adventure!

As I mentioned… Read more

Faith is a strong coping element for many people, and I enjoyed reading about Kala’s journey with Wicca. I thought it was interesting, and it’s wonderful when people feel uplifted by their beliefs.

I also applaud Kala for being open about her experiences.  I find it incredibly valuable when people are willing to share their beliefs so that… Read more

Hi, DeAnn!  This is an awesome link!  Thank you for posting it.  I, too, like container gardening.  I now have a raised wooden gardening box that I’m going to try out this year.  🙂 I also enjoyed reading about your memories of planting seeds.  I’ve often wished more power wheelchairs could somehow lower all the way to ground-level. During… Read more

Hi, Brianna!  I think this is a fantastic read, and I would venture to say that many of us with SMA can relate to your voice throughout the column.  🙂  One thing I’ve noticed as I’ve journeyed through adulthood with SMA so far is that we often are the resources for society.  Our experiences shed light on different issues. Many people turn to us… Read more

Thank you so much, Kevin & Ryan!  🙂