hintsandtips

Living With Huntington Disease

TIPS TO MAKE LIFE BETTER FOR PEOPLE AFFECTED BY HUNTINGTONS AND FAMILY'S

1. Talk TO them not AT them

2. Give them time to answer you. It takes longer for them to process questions and reply.
                                                                          3 Keep clear pathes in their travel patterns.
                                                                        4. One thing at a time - they can't process several things at once.
                                                                        5. Put things in clear containers that are easily opened.
                                                                         6. Label things in the kitchen.
                                                                        7. Listen to them - they need to express themselves.

8. Be straight with them and do NOT sugar coat anything

9. Learn to laugh about situations

10. Don't be afraid - be firm.
                                                                      11. Talk about the good times before HD with them.

12. Depend on the HD person , if only for their memory.

13. Use power of persuasion ( talk about something, give your opinion, leave it alone. They may bring it up later as their own idea. )
                                                                      14. Reassure the HD person that if they try, you will.

15 Have a friend of yours or of children and explain how H D is hard on the children and arrange for child to go there if things get difficult at home for a time.
Some place where you know the child is safe for the night It will help you with the situations at hand. This is also good if the child is comfortable talking to this person and they understand what is going on.

EVERYDAY TIPS

TIP 1
The HD person needs between 5000 and 7000 calories a day to keep them healthy.

TIP 2
Have meals and snacks at a regular time each day. This eliminates confusion for them.

TIP 3
Use spouted cups or cups with straws as this makes it easier for them to drink.

TIP 4
Use large grip type silverware. It is easier for them to hold.

TIP 5
Try to arrange naps just before they eat. They are steadier and more aware when they are rested.

TIP 6
Don't try to have a conversation with them while they are eating. They choke very easily.

TIP 7
Don't mix their food together. LEAVE it separate !!!

TIP 8
Give them lots of time to eat and don't lose patience with them.

TIP 9
Take one day at a time. Don't worry about the future.

TIP 10
Take time to care for yourself so that you can continue to do the things that are most important.

TIP 11
Focus on what the HD person can still do, not what is lost.

TIP 12
Remind yourself that you are doing the best that you can at that moment.