Tips for Caregivers

BECOME 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.

  • First and foremost, 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 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 and triggers. For instance, changing weather patterns can make symptoms worse. It may wise to be there early to help out on humid or rainy days.

    Patiencein 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 do not feel stressed by a time crunch.

    Minimize your loved one’s 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).

    Provide entertainment activities at home. Some of those affected with MdDS are unable to go to movies anymore (the motion, excessive loudness and bright lights make them disoriented). Rent movies to watch at home instead.

    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 anxious and bright lights exacerbates symptoms.

    Drive them to doctor appointments, grocery shopping, and unfamiliar places. Simplify your day, and theirs as well, and notify others if there’s a problem.

    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.

    Give them Tech Support. Some with MdDS are uncomfortable with computers, so help them by reading messages in the online MdDS Support Groups. Print hard copies for them every week so that they are able to follow along with the group.

  • As a husband of a woman who has had MdDS for near seven years, I’m experienced enough with the impact of MdDS to offer some advice. So, to you macho males (or females!) who have taken the position that someone close to you is a hypochondriac or otherwise is seeking sympathy for a disorder that “is a figment of his/her imagination”, please read on.

    You should know that I am not the most tolerant guy and I don’t like complainers! Now that we’ve established my intolerance, I want to say that whoever you are, you may be a victim of what we all suffer now and then – not facing reality! Having both observed my wife’s many many problems from living with MdDS, and having kept up with thousands of inputs from persons with MdDS at several web sites, as well as having talked to some of the most well versed and renowned physicians who have studied MdDS, I ask you to believe me – IT’S A GENUINE DISORDER AND IT’S VERY LIKELY TO BE EXTREMELY DISABLING.

    I’m not going to talk down to any of you non-believers. I’m just asking you to take another look at this and start believing rather than refusing to take your loved one seriously. You’re looking at REAL SUFFERING! Yes, it’s clearly known that a major aspect of MdDS is its failure to show up when those affected are subjected to a variety of “conventional vestibular tests”. And it’s a characteristic of MdDS that the bulk of its impact is in the brain and the vestibular system’s processing of balance sensations.

    But you should know that, as with thousands of other “orphan diseases”, there is little research devoted to it, and many, many physicians don’t recognize or understand the disorder. The definition of an orphan disease is one that “affects less than one in 200,000 people”. We have no idea of the number of MdDS cases, but it is probably well under 10% of that number. After all, the thousands of disorders that are MAJOR ones TOTALLY CONSUME THE ATTENTION OF PHYSICIANS. This one is NOT such a disorder. It’s RARE!!!

    So, guys and dolls, how about taking a moment to realize that what we may be doing is refusing to think that someone else has been victimized and, while we’ve taken our health for granted, your other person needs our support and sympathy. Yes, it means that we can’t lean on her/him like we used to or would like to. That’s life. But are we going to cop out when someone needs us? Denying the truth isn’t the way to face new responsibilities.

    Think about it – it won’t hinder our macho self image to show concern and recognize others’ uncontrolled failings. Hey, we husbands or sons or fathers must try to pitch in as best we can. We husbands DID mean it when we said said “I do” after the words “for better or for worse”? We, too, will be in that boat someday, so why not start training for it with that person who’s struggling most every hour of her/his day with MdDS, Mal de Debarquement Syndrome? And in case we think it’s just hypochondria or some such thing, remember that it is officially recognized by every major medical organization here and abroad, e.g, the Centers for Disease Control (CDC), National Organization of Rare Diseases (NORD), National Institutes of Health (NIH), Vestibular Disorders Association (VEDA), and many renowned doctors in all the major teaching hospitals around the world.

    I’m publishing this because maybe you’ll believe a guy who, like you, doesn’t want to be “suckered” by someone, doesn’t believe in fairy tales, worships his own independence and ability to hold his own, and tends to look down on others’ frailties. Tough guy, you know!

    Roger Josselyn (2004)