Family CAREGIVERS of those with MdDS

•  Be a good listener.  Since exercise such as taking walks outside helps many with MDDS, this is a great time to talk and listen to each other.

• Take it One Day At A Time.  Understand that your loved one with MDDS has their limitations and that they will have good days and bad days.

• Work with the MDDS.  Be aware of the symptoms. For instance, for some with MdDS on humid days, MdDS symptoms are worse.  So, make it a point to be there early to help out.

• Patience – in every aspect of life. It may take longer for someone with MdDS to get ready, put on clothes, eat meals, etc due to the constant swaying and lack of concentration. It will require effort on your part to not rush them so that they does not feel stressed by a time crunch. So, simplify your day and theirs as well and notify others if that would be a problem.

• Minimize your loved ones exposure to triggers.  Some common triggers are fatigue, stress, and not eating when hungry. To combat fatigue, encourage daily naps and to try to go to sleep at a reasonable hour. To reduce stress, encourage daily walks (you can help with the dogs), provide computer help to pay their bills online, assist with household chores, etc. Low blood sugar may increase symptoms of MdDS, so gently remind them of regular meals (breakfast, lunch, and dinner).  

• Drive them to doctor appointments, grocery shopping, and unfamiliar places.

• Run errands that would normally require them to come into contact with a lot of people or bright fluorescent lights (e.g. Home Depot, Costco, etc). For many with MdDS, crowds make them nervous and bright lights makes MdDS worse. 

• Provide entertainment activities at home.  Some of those affected with MdDS are unable to go to movies anymore (the loud noises and bright lights make them dizzy). Rent movies so that they can watch at home.

• Have back-up.  If you are going on vacation or out of town, make sure that you have someone check up (phone, or in person) on your loved one with MdDS.  

• Learn to be balanced for yourself.  You may sometimes feel guilty leaving your loved one  home alone and worry that something might happen to them while you're gone. However, just because someone has MdDS, it doesn't mean that you have to give up your life and cater to them 24 hours a day. It's important for you to allow them to be independent while they know that you are always available to help.  

• Be an advocate or spokesperson for your loved one.  Some with MdDS are technologically challenged (e.g.,  unfamiliar with computers), so help them by reading emails from the MdDS Support Group.  These messages can be printed for them every week so that they are able to follow along with the group.

• Most importantly, GET EDUCATED and know that you are not alone! Don't be afraid to tell others even if they seem skeptical at first. When you feel overwhelmed, ask other family members or friends to help out by having your loved one over for a meal or playing cards. For many with MdDS, they want to socialize with others but in limited settings or small groups.

Last modified on June 13, 2010