This is a guest blog by Jennifer L Hill, Family Home Health Services
When you are with family home health services, you are with family!
Contact: 720 298 5259

Due to the rarity of Rett syndrome, very little has been published about long term prognosis. While medications, physical and speech therapy along with nutritional support can help manage symptoms, prevent complications, and improve quality of life, the question that constantly plagues our minds is; what can we do in the meantime?

Make time for yourself. Solitude helps build mental strength.   If you give yourself some time to refresh and recharge, not only will you feel better, but others around you will feel better too.

Enjoy the moment. Tomorrow is not promised to any of us, therefore enjoy the time when you laugh so hard your tummy hurts!

Ask for help. Many of us are guilty of wanting to do everything by ourselves. It’s okay to ask for help. Many of us don’t like to ask for help. We may have been taught that it’s a sign of weakness, so we cling to the notion “I can do everything myself,” even if it’s no longer the case.

Never stop learning. Being educated about one’s diagnosis is half the battle. The more you know, the more powerful you are. Do everything you can to be well informed about one’s diagnosis. Knowledge is power!

Treatment is very valuable. Focus on the management of symptoms and support. Take a multidisciplinary approach. The earlier treatment starts, the better.

Ignore fleeting thoughts of despair. Many times we feel overwhelmed by thoughts of despair when a loved one is dealing with a lifelong diagnosis, especially one that doesn’t have a cure yet.   Remember that your thoughts are immaterial. They only gain meaning when you give them meaning,

Meet with others. Support groups are very effective! Support groups can be an effective way to vent, share tips and provide emotional and moral support to one another.

Expect great things! Each day is a new opportunity for great things to happen!