Getting Ready in the Morning

Getting ready in the morning when you have spinal muscular atrophy (SMA) can be challenging because of the lack of strength and inability to move much, but with a little bit of planning and patience, it's very easy.

Alexa, turn on the lights

The first thing I do is use my voice-activated assistant to turn on the lights and start some music to get me in a good mood while my caregiver comes in to get me out of bed.

My caregiver gives me a quick bed bath and dry and then puts powder on me to keep my skin nice and dry for the day. She then puts my U-sling with a headrest under my body and grabs the Hoyer lift to help with the morning transfers.

Easy comfortable transfer with a Hoyer lift

My Hoyer lift has made the pain my body feels from being free-lifted basically non-existent.  It allows my caregiver to safely transfer me almost anywhere without risking injury to her back or falling with me.

When using a Hoyer lift, it's important to position it correctly over the person being lifted and carefully attach the sling. Lift the person slowly and smoothly, ensuring proper support for their head and neck throughout the process. Once lifted, move them to the desired location and lower them down onto the seat with the same level of care. Confirm their comfort and ensure the sling is secure before moving on. Hoyer lifts are one of the bigger pieces of equipment to use in a morning routine, but they are vital to me for safe and comfortable transfers to the toilet and my chair.

Adapted toothbrushes and hair care tools

I then use my adapted toothbrush to brush my teeth. Some toothbrushes are specially adapted to help people with different needs. For instance, some toothbrushes have extended handles or flexible necks, with small brush heads, which makes them easier to use in hard-to-reach areas of the mouth, like mine. Others have angled bristles that help clean teeth more efficiently without putting too much strain on your wrists or hands. And for those who struggle with fine motor skills, some toothbrushes have larger buttons on the handle for more comfortable use. These adaptations can make brushing your teeth an easier and more enjoyable experience for everyone, even if your jaw won’t open wide, like mine.

After I brush my teeth, I use a long-handled hair bush to fix my hair. Sometimes I also use long-handled makeup brushes to put on my makeup after my caregiver puts my elbows on the counter so I can reach my face.  I recommend using brushes or personal care items with long handles to help you get ready in the morning if you have SMA. This can make it easier to reach and brush your hair or do your makeup without needing to lift your arms too much. Additionally, you may want to consider using hair ties or clips that are easy to grip and manipulate, such as those with a wider surface area or with textured grips.

Remember, having tools that accommodate your needs can make daily tasks more manageable and enjoyable but it's never an issue to ask a caregiver for help for things you cannot do!

Caregiver aids in my independence

Caregiver assistance is tailored to the specific needs and abilities of the individual receiving care so it’s your abilities that a caregiver helps with. The goal of personal caregiving is to promote independence and enhance a person’s overall well-being while respecting their privacy and dignity, so don’t be afraid or embarrassed to ask for what you need!

When I tell my caregiver what I need in detail, it makes her job easier and makes me happy knowing that my needs are being met in the way I need them to be.  Open and effective communication with healthcare professionals is paramount to ensuring that you maintain your health and independence.

With a great routine, a fantastic playlist of positive morning vibes, and communication with your care team, getting ready can be something to look forward to!  Have a great morning.