Living With HD
By Heather Pratt
Heather has Huntington's Disease. She sent these suggestions to hunt-dis, the online discussion group for Huntington's Disease, and gave her permission for them to be published here. For more information on hunt-dis, see Mailing List for Huntington's Disease.
Some of the suggestions I have for living with HD are:
- Keep life simple - Rest, Exercise, Nutrition, A daily laugh
- Carry earplugs with you when you are out (Some people with HD are sensitive to noise)
- Carry calendars with you to write down everything you must do for the day and any information you get from other people
- Develop a message centre in your home, so other family members have an idea where to look for stuff
- Use an answering machine so you can rewind the tape and recheck those messages (One of the symptoms of HD is transposing numbers)
- Use sticky 3M note pads to keep your place in cookbooks - also works in crochet or knitting patterns
- Use one color of paper for phone messages
- Have a check-list on the front door so you can make sure you have keys, etc.
- Rewrite recipes so they have a numbering system (1. Cut vegetables, 2. Spray pan, etc.)
- Try to do the same task on the same day of each week (Wash on Tuesday, etc.)
- Get a watch with an alarm clock and set the alarm to remind you to catch bus, leave for doctor's appointment, etc.
- Listen to relaxing music
Transcribed to HTML by Renette Davis with permission from the author, Heather Pratt. Send comments for Renette by clicking here and comments for Heather to: nstn6731@fox.nstn.ca
Last updated: Dec. 4, 2010