Managing MdDS, Caregiver & Coping Tips

Wondering if you should try a migraine diet? Need advice for flying? What about cooking and cleaning with MdDS?

To manage persistent symptoms, it is important to reduce stress, be well rested and pay attention to your symptom triggers. Try not to panic, and always keep in mind that MdDS is not life-threatening. Remember:

You are not alone. We and our support group are with you.
There will be good days in addition to bad days.
Listen to your body and brain and ask for help when you need it.

Our first online support group was established in 2003, and the tips below represent the best advice given by support group members for living with MdDS symptoms in a variety of situations.

Traveling by Car & Air

For many, symptoms temporarily reduce with exposure to passive motion, e.g., driving.

Being the driver is usually better than being a passenger. The front seat of the car is usually better than the back.

When taking long driving trips, stop every couple of hours to stretch your legs. A brief walk is good for balance as well as circulation.
Choose plane seats in the front to midsection, the most stable part of the plane being just forward of the wings, to reduce sensing flight motion and turbulence.

More Travel Tips

Computers & Work

Don’t scroll quickly on screens (phones, tablets, computers), as this may increase symptoms.
Some have found blue light blocking apps and glasses helpful.
iPhone users should enable Reduce Motion. To reduce visual stimulation on newer iPhones, triple-click the Side button to display the Accessibility Shortcut menu, then tap Reduce White Point.
Reduce flashy ads while on the Internet. Install a browser extension such as AdBlock or Adblock Plus.

More Workplace Tips

Diet & Exercise

There is no medical evidence that diet contributes to MdDS, but modifying your diet may improve your overall health. A regular exercise program can be helpful in coping with symptoms and improving mental and physical health as well. Look for activities that keep your mind engaged while working out.

Many people with MdDS report weight gain if they find it difficult to exercise at the level they did prior to MdDS. Strive to eat healthy foods, limit alcohol consumption, and stay hydrated.
When walking or hiking, especially on uneven surfaces, walking sticks, hiking poles or a cane is helpful.
Avoidance of gym equipment that involve repetitive motion is recommended, especially those which may create a sense of forward movement in the absence of actual movement: treadmills, ellipticals, rowing machines, Stairmasters, etc.

More Diet & Exercise Tips

Around the House & Kitchen

Don’t stress about what you don’t get done. Your mental and physical health are more important than a spotless house or gourmet meals. Be mindful and take your time.

Avoid a spike in symptoms by not scrubbing vigorously, bending down, standing up or turning in place quickly.
The closed space of the shower is troublesome for many. Touching the walls may help with spatial orientation. Many find a shower stool, massaging tub mat, grab bars, or a clear shower curtain helpful.
Consider switching out any fluorescent lights in your home. Switch to LED or use incandescent table-top lamps instead.
If shopping is challenging, look for grocery stores that offer shopping services with pick-up or delivery.
Keep meals simple and ask for help cooking, especially stirring and mixing.
Be mindful when loading and unloading the dishwasher and washer/dryer. The up-down and back-and-forth movement may trigger or elevate symptoms.

More Cooking Tips

Reading & Eyeglasses

Some have found blue light blocking glasses helpful. Note that a change in shape may increase or decrease symptoms.
Some have found it beneficial to hold their book or tablet at eye-level to avoid downward gazing. When your arms tire, it is time for a break.
If reading flares symptoms, try audiobooks/books on tape.

Shopping & Socializing

Online shopping is available for almost everything these days, and many stores offer curbside pickup. When you use iGive.com, many retailers will make a donation on your behalf.

Shop during off-peak hours to avoid crowds. Avoid stores with bright fluorescent lights if possible.
Ask a friend or family member to help you shop; having someone find items will allow you to get in and out faster and limit your reaction to aisles, crowds and bright lights.
When attending sporting events, the theater or other public events, get to your seat early so you don’t have to deal with large crowds. After the event, wait until the rush of people has dissipated before leaving your seat.
If you aren’t comfortable going out right now, invite people to come to you – a neighborhood walk, hanging out, movies, take-out food, game night, etc.

More Socializing Tips

Maintaining Emotional & Spiritual Well-Being

Find activities that you enjoy to focus on instead of your symptoms: reading, music, movies, television, walking, exercise, writing, volunteering, crafts, religious services, clubs, social outings, reading, podcasts, meditation, etc.
Recognize and appreciate what you can do instead of what you cannot.
Don’t feel guilty about saying “No” or for not being able to do everything you used to.
Remember you are not alone. Reach out to others that have MdDS and understand; join our support group.

If you are a caregiver: The most helpful thing you can do is say, “I believe you.”

More Caregiver Tips

Roger Josselyn’s Letter to Family Members

Roger Josselyn, set the path to success for the MdDS Foundation when he co-founded it with his wife, Marilyn, in 2007. He passed away in 2018, leaving a legacy of cleared hurdles and lasting accomplishments. First shared in 2004, his excellent message for families and friends of those who live with MdDS is still very relevant.

Date: Wed Dec 15, 2004
Subject: MdDS and Insensitive Spouses, Parents or Kids
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 to the several websites, 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 it’s failure to show up when 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’s and vestibular system’s processing of balance sensations.

But you should know that, as with thousands of other “orphan diseases”, there is no attention or research devoted to it, and many, many physicians don’t recognize the disorder. The definition  of an orphan disease is “less than 200,000 cases”. (We have no idea of the number of MdDS cases but our estimate could be less than 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 your 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 “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, eg, The Centers for Disease Control, National Organization of Rare Diseases, National Institute of Health, Vestibular Disorders Association, and many renowned doctors in all the major teaching hospitals around the world.

Roger Josselyn

Suicide Help

If you’re thinking about suicide, are worried about a friend or loved one, or would like emotional support, the 988 Suicide & Crisis Lifeline is available 24/7 across the United States. Call or Text 988 or visit https://988lifeline.org for more information.
International Suicide Prevention Hotlines