10 Years of LOTS: What I Wish I Knew Then
I recently had a mom of a college student find my page because her college-aged child was recently diagnosed with LOTS (Late Onset Tay Sachs). She asked me, “Have you ever thought of writing a blog post about what you wish you would have known when first diagnosed? I noticed you are 10 years into your diagnosis.” This one is for you!
Since I was officially diagnosed 10 years ago, here are some things I wish I would have known or at least have learned since :
It will teach you who matters in your life and deserves your time. Also who YOU matter to. Drop the friends who don’t understand (or even try to understand what you’re going through) the REAL ONES will show up for you or even BUY A RAMP when you need it!
Embrace whatever mobility aid(s) you may need. When I was first diagnosed, I used a cane. It helped me walk long distance, but also helped signify to others to not bump into me. It makes people a little more aware. As mine has progressed, I now use a rollator daily for extra balance, and a wheelchair for longer outings. If you need tips on making your mobility aid more YOU - feel free to ask me for tips. I’ve got a painted cane, one that has stickers, one that lights up and more! They don’t have to be ugly and sad.
Do your physical therapy - it truly makes a difference, especially over the years. It also helps keep the muscles that don’t have weakness strong. LOTS affects your triceps and quadriceps, so keeping those other muscles strong makes a difference.
You will have bad days - it’s okay to cry, let it out and wake up refreshed. Not every day is a great day, but the harder days make you appreciate the good ones.
You are allowed to make things easier. There is no award for doing things the hard way just because you used to be able to. Ask for help, use the shower chair, sit down when you need to, get the grab bar, use the wheelchair, buy the thing that makes your life easier. Accessibility isn’t “giving up,” it’s giving yourself more independence.
Your life doesn’t have to stop looking like your old life to still be a really good life. You may have to do things differently, take longer, change plans or find new ways to enjoy the things you love. That doesn’t mean your life is getting smaller. Sometimes you just have to get creative and redefine what “doing it” looks like.
