“So…what exactly do you do all day?”

I get asked this question often, especially since I can no longer drive, use my hands or talk. Despite popular belief, I do not sit and watch Netflix all day or sit around bored, staring out the window. In fact, just the opposite. I knew from early on in my diagnosis that in order for me to survive, and not go into a deep depression I would need to keep my purpose. I needed to have reasons, beyond just my kids, for getting up every morning, and that involved retaining as much from my old life as possible.

Since the day I was told I had ALS, I have dragged myself out of bed each morning and gotten ready for the day. I know that for some people, staying in their pj’s and watching TV brings comfort and that’s great, but it’s not for me. These days I get up at seven, and with the help of a caregiver, undergo my grooming routine and get dressed. I eat breakfast while Silas and Olivia are getting ready for school, and in this way I feel connected to them…starting the day together.

Throughout the day I do a series of exercises for my legs, hands, neck, mouth and yes, even my tongue. I am trying to do whatever it takes to retain as much movement as possible, for as long as possible. Stress has been known to speed up one’s progression, and so in addition to prayer, I aim to do meditation and visualization every day.

So many of the things that used to make up my day became impossible without the use of my hands. I am so grateful for the technology that allows me to use a tablet and control it all with a sensor sticker I put on my glasses. With this adaptation I continue to keep in touch with friends and family, as well as organize the kids and their activities, rides etc. I do meal planning, grocery shopping and banking, which allows me to be useful and feel “normal”.

I use an online to-do app called todoist to organize my day, week and special projects, instead of my hardcover daytimer. I missed my pencil and paper journaling, and found penzu.com where you can create a collection with as many journals as you want. You even design the cover, pick the colours and choose the font. I now have online journals for prayer, for blog ideas and for courses I am completing online. I love it!

One of the greatest things I have been able to do with the tablet is read books. Using the library app Libby, I am able to “check out” books. I can place holds on new releases and when available they pop into my online library. The best thing is that when they are due back, they automatically get removed. No more late fees! I can also keep participating in a book club with some of my amazing Calgary friends.  Through bible.com I am doing Bible studies and a reading program, that through daily readings takes you through the whole Bible in a year. If I had the choice, I would still choose to curl up on the couch with real books, but I can’t, so this is the next best thing.

Add in visits from family and friends, appointments and getting outside for walks or quiet time on the deck, my days are full. So while I may not be working, I still aim to be productive, and keep my brain sharp. 😉  I am choosing to live with ALS.

Thanks for reading  🙂