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.
- You are not alone. We and our support groups 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.
- Ask how you can help; figuring this out is often a team effort, but the main answers need to come from them.
- Be empathetic.
- Let them know, with actions, that you “have their back.”
- Be patient. Steadfast support is incredibly meaningful.
- If not yet diagnosed, do anything you can to help facilitate the process of finding an accurate diagnosis.
- Understand that many things have likely changed in the blink of an eye for them; nevertheless, it doesn’t mean WHO THEY ARE has changed.
- Self care is CRUCIAL. Being a caregiver can very quickly become overwhelming. Don’t let it define you, and make time for yourself.
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 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 “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.
- For many, driving is 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.
- Try EarPlanes® or FlyFit® earplugs for air travel.
- Instead of reading or playing games on your tablet/phone, it is better to avoid downward gaze and keep your mind engaged with the environment. Watching in-flight movies may or may not elevate symptoms.
- Discuss medication options with your physician. Some physicians suggest taking benzodiazepines or slightly increasing your dosage prior to and for a short time after air travel. Benzodiazepines suppress the vestibular system and may help minimize the affects flights have on MdDS symptoms. While many support group members claim this course of action helps during travel, clinical studies are required to prove their effectiveness across the population of MdDS sufferers.
- 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.
- Consider switching out any fluorescent lights in your home. Use incandescent table-top lamps instead.
- Less screen time is usually better.
- Maintain healthy ergonomics – posture, positioning of the chair, height of computer screens, and use of a headset or speakerphone.
- Do not skip your breaks, especially if using a computer.
- Request to have the fluorescent lights above your work area disconnected. Use table-top lamps instead.
- Ask for accommodations if possible: a reduced schedule, working from home, different responsibilities, reduction in screen-time, etc. Check with your company’s human resources department to see what modifications could be made, and what steps you would need to take to receive temporary or permanent accommodations.
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.
- Plan ahead and stock your pantry for a few nutritious yet easy-to-prepare meals, as you may not feel comfortable cooking when your symptoms are high.
- When starting an exercise regimen, experiment gradually with capabilities. If intense aerobic exercise increases your symptoms, try weight lifting, yoga, tai chi, Pilates, etc.
- Jogging or running while focusing on the horizon is one of the best forms of exercise.
- Some enjoy biking but may experience “payback” or rebound, a temporary increase in symptoms afterward.
- If you enjoy swimming, do not float in the pool as the passive motion may triggered symptoms.
- Depending on your balance, consider dancing, exercise classes, basketball, and other activities that require an engaged mind/body connection.
- Check with your doctor before beginning any exercise program, making any changes to your diet, or trying any supplements suggested by others.
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.
- When cleaning, be mindful to not bend down, stand up or turn in place quickly. Avoid a sudden spike in symptoms and take your time.
- 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.
- 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 careful loading and unloading the dishwasher and washer/dryer. The up-down and back-and-forth movement may trigger or elevate symptoms.
- Look for easy meal options, including healthy take-out and frozen foods. Sandwiches served with some fruit or vegetables for dinner is surprisingly enjoyable.
- Plan ahead for days when symptoms are high. Stock your pantry for a few nutritious yet easy-to-prepare meals, or meals that you can prepare and eat several days in a row.
- If downward gaze while chopping/slicing ingredients is bothersome, try sitting at a table instead of countertop preparation.
- When handwashing dishes, do not press up against the sink. Taking a half-step back to elongate your gaze may make scrubbing, especially pots and pans, less bothersome.
- Do not stand on step stools, chairs, or ladders. Ask for help.
- 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.
Online shopping is available for almost everything these days. When you shop with Amazon, remember to always #StartWithaSmile. By logging in to smile.amazon.com and selecting the MdDS Balance Disorder Foundation as your charity, Amazon will donate a percentage of most purchases to the Foundation on your behalf. When you log into iGive.com first, donations may be stacked.
- 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.
- Look for events at smaller venues and lounges rather than those held at arenas or stadiums.
- If you do attend a larger event (sporting event, concert, theater performance), use the handrails on steps and take your time. Ask the person you are with if you can hold their hand, arm or shoulder to help you balance when necessary.
- Many people still enjoy going to the movies, although some are bothered by quick camera transitions, fast moving action films, or scenes with moving water. It’s generally recommended to avoid 3-D movies.
- 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 a support group.
National Suicide Prevention Lifeline: 1-800-273-8255
International Suicide Prevention Hotlines