Emotional and Spiritual Wellbeing is shown to have the greatest impact on living longer with ALS.
YOU MUST DISCUSS WHAT YOU ARE FEELING
We understand that your emotions are going crazy with a diagnosis like ALS. The sooner you acknowledge what you are feeling the better. It’s okay and normal to be feeling:
Creating your team
- Find someone you can talk to. This may not be a family member, unfortunately the entire family is going through their own set of emotions.
- You may want to find a close friend to confide in.
ALS FACEBOOK GROUPS
- These groups are amazing and supportive when it comes to navigating all that you are feeling and the overwhelm you are faced with.
- Attend an ALS support group in your area. ALS of Utica offers a caregivers support group monthly. See programs for more info.
With time, you will be able to see that there is still so much to be grateful for. Focus on even the smallest things that you can be grateful for:
- Time with the people you love
- Kind words from a friend
- People who care about what you are going through
- The more you focus on gratitude, the more you will see
- ALS may not be the life you had planned, but it can still be a beautiful life.
It sounds so simple, but good quality sleep is one of the most important things anyone can do for the health and strength of their mind and bodies. Melatonin is a naturally occurring hormone controlled by light exposure that helps regulate your sleep-wake cycle.
WAYS TO IMPROVE SLEEP
- Expose yourself to bring sunlight in the morning. The first light your eyes should see in natural light (not our cell phones)
- Spend time outside during daylight every day, even in winter
- Let in natural light into your home
- When the sun goes down:
- Avoid bright screens within 1-2 hours of your bedtime. The blue light emitted by your phone, tablet, computer, or TV is especially disruptive. You can minimize the impact by using devices with smaller screens, turning the brightness down, or using light-altering software such as f.lux. You can also use glasses called blue blockers.
- When it’s time to sleep, make sure the room is dark and cool. Use heavy curtains or shades to block light from windows, or try a sleep mask. Also consider covering up electronics that emit light.
- Keep the lights down if you get up during the night.