A vertical platform lift will help me overcome another SMA obstacle

A great relief comes when you’ve been working hard to get through an obstacle and finally see progress. Perseverance is rewarding.

In my case, SMA has given me many complicated challenges. As my mom, my medical team, and I vigorously work through each one, the relief we feel when things start to come together is immensely rewarding. Recently, I’ve written about how moving into a new house — after 29 years in one place — has been my latest challenge.

For many people, moving involves making decisions about which knickknacks and objects to get rid of and which ones to keep. In my case, there’s no decision: I have to bring all of my medical equipment and adaptive-living technology, and it’s a lot. All of it has to be moved because it’s what keeps me alive and able to live independently.

At the new house, we’re working to convert the garage into my living space, and creating my bedroom, bathroom, kitchen, and medical supply room there is a massive undertaking. Each room needs to have enough space for my medical and adaptive-living technology.

Since July, getting my new “bachelor pad” ready has been chaotic, but when we visited the new house last week, my mom said she could finally see a light at the end of the tunnel. The renovation is indeed starting to come together, but a huge amount of work still needs to be done in these last weeks.

Still, it’s nice to see how far we’ve come. It gives me hope that when the job gets finished, it’ll be totally awesome.

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Riding high on my VPL

I’ve written about how we’re solving the problem of me being able to independently control the temperature in my part of the house. We’re doing this without installing another air-conditioning unit, which would require external changes to the house. We’re also trying to ensure that I can move from my side of the house to my mom’s independently.

The house we’ve lived in for almost 30 years is one level, which makes it easy for me to go from my bachelor pad to my mom’s side. But the new house has more than one level, and my space is below my mom’s. The contractor built a ramp from my area to my mom’s floor, but it was too steep for my chair.

That’s when we had the idea of getting a vertical platform lift (VPL). I could drive my chair on one of those and it would bring me up and down, much like an elevator.

Two nonprofit organizations and a special friend of the family for over 30 years paid for the VPL, and thanks to their heart-filled generosity, it’s been installed. But there remains a problem: I’m unable to operate it by myself. I can’t use my arms or speak loud enough for the voice control, and I’m not willing to be dependent on my nurses to control the lift every time I want to go to my mom’s area.

Fortunately, we’re in the process of getting technology that will allow me to control the lift myself. I hope that not long after I move in, I’ll be a fully independent VPL operator, traveling from my space to my mom’s with nobody’s help. When we finally get everything figured out, the immense relief will be a feeling to celebrate. I promise to write more on this soon.

No matter who you are, life is full of obstacles. We should never give up working through them. Perseverance and faith are what help me soar through life!

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.