My goal is to make great events of 2024 more consistent in my life
This year brought staffing and technological help. I'm hoping for more of that.
As I reflect on 2024, I see that some great things have happened for me. I’m trying to figure out how to multiply those great things so they happen more often. This is one way I can gain an advantage while living with SMA. I’m motivated to take what worked in 2024 and make it happen again and again.
In a November column, for instance, I explained how my mom and I persuaded a nurse to work more hours with me. She was already working one night a week, but we wanted her to take on full-time night duties. We were successful! That makes me think about how this person, a good friend of one of my other night nurses, first came to work with me.
One night my nurse called her friend to ask if she’d like home healthcare work for one night of the week, atop of her other nights at a hospital. My nurse promised her friend that the job was wonderful and that I was a wonderful client. The new nurse soon found out that was all correct, and now all of her work hours are with me.
Now I’m asking myself how I can multiply that success by taking advantage of my other nurses’ connections.
Finding help at home
Some of them have tried to persuade their colleagues to enter home healthcare and work with someone who has SMA. I have one nurse, for example, who works two or three days a month at my house, with the rest of his time at the hospital. He frequently tells me about the co-workers he’s tried to persuade to work with me. Most were uninterested, except for one. That person spoke about my case with my nursing agency, but unfortunately, he considered my house too far of a drive.
Since then, the nurse who’d recommended him is still trying to find somebody to work with me through his job at the hospital. I consider him a great canteen of generosity, and he’s earned my respect.
Someone else who works with me has a lot of nursing friends on social media. Every time I post an online ad for a job, she shares it with her friends on the internet. This past summer she did persuade a nurse to speak with my nursing agency. Her friend came out to meet me, and it seemed as if she’d be a good fit to work with me daytime on Saturdays. Unfortunately, her duties with her full-time job increased, and she couldn’t handle both the extra work and my case.
Back to my original question: How can more of my nurses’ friends and connections take on my case? After all, it happened in the fall, so I’m eager to see it happen again. To figure that out, I’ll have to brainstorm with my nurses and nursing agency. We’re all working together to knit a network of connections that can act as my safety net.
Many other great things happened in 2024 that I hope to make more consistent in 2025 and beyond. I plan to talk about them in upcoming columns.
Consistency and generosity
Creating a chain of consistency is so important in most everyone’s life, including most of us with SMA.
Consistency helps people to focus, acting as a lubricant that keeps the wheels of our ambitions turning. One of my column’s major themes has been the consistency of generosity in my life. It’s kept my wheels turning so I can keep lifting people’s spirits.
In that spirit, I’ll end the year with an update of my previous column: I’m happy to say that a source has generously agreed to pay for my new TD I-13 augmentative and alternative communication device. A few people can understand my real voice, and I want to keep talking to them this way. But those who aren’t used to that voice can have trouble understanding me. The new TD I-13, thankfully, will help me talk with people not used to my real voice. And that will help me spread my message of hope to a wider audience.
My goal is to offer hope over and over again in 2025 and beyond. That’ll help me soar with even more determination.
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.
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