My Son's Own Apartment 

When we moved into our new home in 1988 we had an apartment included for Grandma. In 2000 she decided to move into a senior community. At this time and after some updating, Mike moved down to the apartment. This was another important step for his safety and comfort.

Unprepared for the progression of SMA

Having his bedroom on the second floor was now a concern for his safety while having to use the stairs on a daily basis. I think this was a precautionary lesson we didn’t think of. 

Mike was 12 and still so independent when we moved into our new home, so at that time we failed to be prepared for the progression of this disease.

Everything we learned about living with a disability happened while we were living in that moment. This was not the ideal situation. 

My advice: try to plan for the future

If I could give any advice, it certainly would be to ask a lot of questions and do research for any future plans. There will be many challenges to work on and it’s best to understand what will be needed.

Although it was a sensible move for Mike to go down to the apartment, there were some new hurdles to get it right for his safety. We needed to replace the bathtub with a walk-in shower. 

You would think we got it right for him, but after a few more years we had to replace the shower again with a no-step shower for his safety. As you can expect, these renovations were costly but necessary.

Ramp adjustments over time

The apartment was working for him now since OVR did provide that cement ramp for Mike to drive his scooter into the apartment. Shortly afterward he was having difficulty stepping off his scooter safely.

Now his Dad built a wooden ramp for his scooter. He was able to drive into the apartment and up onto the new ramp. 

This raised his scooter high enough which allowed him to step off in a standing position. Apartment, Ramps, Scooter, and his independence were restored for a while.

These new accommodations gave him the necessary help for a few more years. As we learned this important lesson, the disability changed over time. 

Faced with new challenges

This progressive disease constantly gives Mike a challenge to adjust his life and expectations. As his parents, we too must adjust our abilities to give him all the physical and emotional support that he needs.

Well, we were then faced with another challenge for Mike. He was now established nicely in his career and faced with bathroom issues. When home, his toilet lift gave him the privacy and support he needed.

He was then facing a problem at work because there was no lift available for him.  There were times that he needed to call me at my office to ask if I would come home to assist him. Another new challenge for him and me.

We did our best to meet this new challenge so he could continue in his working career. A career that he enjoyed and received his independence. As always, we are so proud of his fighting spirit.