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Katie Napiwocki replied to the topic Ear Soreness in the forum Adults With SMA 1 year, 7 months ago
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 re…[Read more]
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Katie Napiwocki replied to the topic No Accessible Room At The Inn – Column in the forum Adults With SMA 1 year, 8 months ago
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 worked…[Read more]
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Katie Napiwocki replied to the topic Good Can Come From the Intrinsically Bad in the forum Adults With SMA 1 year, 8 months ago
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. 😊
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Katie Napiwocki replied to the topic Good Can Come From the Intrinsically Bad in the forum Adults With SMA 1 year, 8 months ago
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 fr…[Read more]
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Katie Napiwocki replied to the topic Columnist Reflects On Adaptations and Limitations in the forum Adults With SMA 1 year, 8 months ago
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 my…[Read more]
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Katie Napiwocki replied to the topic Columnist Reflects On Adaptations and Limitations in the forum Adults With SMA 1 year, 8 months ago
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. 🙂
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Katie Napiwocki replied to the topic My Reflections On Aquatic Therapy in the forum Adults With SMA 1 year, 8 months ago
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 mo…[Read more]
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Katie Napiwocki replied to the topic Columnist Reflects On Being a Woman With SMA in the forum SMA and Dating/Relationships 1 year, 8 months ago
Too funny, Ryan! 😀
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Katie Napiwocki replied to the topic Columnist Writes About Treating Chronic Migraines in the forum Adults With SMA 1 year, 8 months ago
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 head…[Read more]
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Katie Napiwocki replied to the topic Letting Go and Making Sacrifices for My Health in the forum Adults With SMA 1 year, 8 months ago
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 m…[Read more]
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Katie Napiwocki replied to the topic Why I Like Having a Large Care Network in the forum Adults With SMA 1 year, 8 months ago
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 th…[Read more]
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Katie Napiwocki replied to the topic Why I Like Having a Large Care Network in the forum Adults With SMA 1 year, 8 months ago
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. 🙂
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Katie Napiwocki replied to the topic Why I Like Having a Large Care Network in the forum Adults With SMA 1 year, 8 months ago
That is a really good point, Ryan! 🙂
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Katie Napiwocki replied to the topic Why I Like Having a Large Care Network in the forum Adults With SMA 1 year, 8 months ago
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?
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Katie Napiwocki replied to the topic Introducing “From Where I Sit” in the forum Adults With SMA 1 year, 8 months ago
Beautiful words, Halsey! I, too, look forward to reading your column! 😊
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Katie Napiwocki replied to the topic SMA and Escapist Fantasy in the forum Adults With SMA 1 year, 8 months ago
Thanks very much, Kevin! I would also love to know what literary works others with SMA have connected to. 🙂
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Katie Napiwocki replied to the topic Columnist Writes About Owning Her SMA Story in the forum Adults With SMA 1 year, 9 months ago
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 with…[Read more]
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Katie Napiwocki replied to the topic Columnist Writes About Owning Her SMA Story in the forum Adults With SMA 1 year, 9 months ago
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 look…[Read more]
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Katie Napiwocki replied to the topic Fumbling Through the Dark: Navigating Adulthood with SMA in the forum Adults With SMA 1 year, 9 months ago
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 an…[Read more]
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Katie Napiwocki replied to the topic Introducing “A Wildflower in the Wheelderness” in the forum Adults With SMA 1 year, 9 months ago
Awesome, DeAnn! 🙂
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