Taking stock of the New Year’s blessings that have affected my life

If I could go back in time a year, to Dec. 31, 2022, and retain what I know now, I’d be so excited about the people who would come into my life in 2023. I’m referring to my new nurses, who have been providing me great care. As I previously wrote, I had hope and faith that these people would appear.

As I write this now, on Dec. 31, 2023, some other things are coming into my life that give me a lot of hope and excitement.

Until recently, for example, I’d had the same computer speakers for many years. The sound had become muffled and sometimes irritatingly distorted. Something else really frustrated me, too: For the past few years, when I’d try to turn the sound up, the volume would often decrease. How crazy is that?

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I put up with this for way too long. As 2023 wound down, I spent time looking online for new speakers, with the help of one of my tech-savvy day nurses.

My speakers had lasted so long that I didn’t expect them to stop working completely. But that’s exactly what happened two weeks before Christmas. That evening, I told my nurse, who is also my Mr. Fix-It, that my speakers didn’t work at all.

When he returned the next day to take care of me, I expected that he’d temporarily fix the speakers so that they’d work at least until my mom and sister could buy me new ones for Christmas.

What happened instead reminded me of the spirit of giving. After I told him that my speakers had stopped working, he contacted my physical therapist (PT) without my knowledge. The two of them decided to buy new speakers that night!

The next morning, after my usual PT session at my house, my nurse and my therapist completely surprised me with the gift they’d bought. And these aren’t just any speakers — they’re state of the art!

Physical therapists and nurses aren’t obligated to buy their patients anything like this, which makes me even more thankful. It’s been proven over and over again — during the past year in particular — that everyone on my medical team is part of my “canteen of generosity.”

Continuing to practice talking

Another thing I’m excited about is that I’ve been experiencing some pleasant effects from a healthy period I’ve been in since September.

I communicate with a computer voice by using a TD I-13 augmentative and alternative communication device, part of Tobii Dynavox‘s TD I-Series. It’s a wonderful technology that I love to use to speak with the majority of people in my life.

Additionally, I like to use my real voice to speak with a handful of people, just to keep up the practice. I prefer to have three or four people I can do so with. These are people who are around me a lot and are used to my speech. Recently, I was down to just two of them because some had left or moved away.

But new opportunities for me to increase this number arose when I recently got two new, full-time night nurses. I’ve started having 45-minute sessions with them, during which they listen to me practice saying phrases with my actual voice. This helps them get used to the way I talk.

It’s working out well, and they’re making progress with understanding me. It’s helped that my voice has been strong recently.

Even when I’m well, my real voice is often softer at night. But with my current healthy period, my voice has become stronger, both day and night. I recently thought that my voice has been getting stronger in the evening, even more so than when I first wake up.

Please understand that I love my I-13 computerized voice device. It’s crucial in my life. Some people need to use a speech-generating device like the I-13 to communicate with everyone, all the time, because they can’t use their own voice at all. There is absolutely nothing wrong with that. They should use the device to communicate with everyone if they need to.

I like to keep up the practice of using my own voice with three to four people. Then I use my I-13 to communicate with everyone else.

I look forward to enjoying my new speakers in 2024. I will also practice speaking more by using my own voice with my two new night nurses and a couple others.

The kindness that my nursing agency has shown me has also been a blessing this past year. What blessings will come to me in 2024? What blessings will come to you? Let’s soar together and find out.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.