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Q1: What impact do you hope to make?

A: I developed MdDS after a 7-day cruise, which my husband and I took to celebrate our 25th wedding anniversary. On Valentine’s Day 2015 my life changed, as if a switch was flipped. I’m finally sharing my story because with my 25-year background working in healthcare, I am in a somewhat unique position: as a patient who has this syndrome and also as an observer of those who provide care to people with MdDS.

I’m able to empathize with the patients and the providers. I can sit on the fence and look in both directions. Sometimes I feel like I am an umpire at a tennis match, swiveling my head back and forth between provider and patient. I empathize with the researcher who wants to find a cure, and with the doctor who wants to help their patient, but mostly as a patient who wants to walk into a doctor’s office and yell, “Just fix it for me and make me better!”

The impact I want to make is two-fold. First, to hopefully bridge the divide between providers, researchers and patients, help those who are challenged with this syndrome to cope with it until we find a cause/cure. Second, I am not as frightened of my numerous symptoms as maybe some others are since I am familiar with anatomy. I was able to find, learn and adapt coping skills which may be beneficial to others as they learn to live with this syndrome. So I want to share these skills as someone on the inside to help ease some of the fear of coping with a rare disorder and the unknown.

Q2: How did you feel when you found a global network of others like yourself?

A: It has actually been so many years that I can’t remember if I found the Facebook support group or the MdDS Foundation website first. In either case I was so incredibly grateful to not feel alone anymore. Finding support for a rare disorder helped me break down some of the walls surrounding my “oneness” that I felt. It was incredibly difficult to describe what I was feeling regarding the motion sensations and brain fog without feeling like it was my fault I got this or that I was losing my mind. Unfortunately, those feelings seem to feed into a loop of increased symptoms, which in turn contributed to me feeling more alone. Finding a support group even though it was virtual was tremendously validating! To find others who absolutely understand and have been on this journey had a calming effect on my system. Members of the group, MdDS Friends, made themselves available to share support and encouragement and practical tips. They helped me get through some really tough days in the beginning. The support group has also enabled me to feel useful again as I share coping mechanisms with others now that I have had this for nine years.

Q3: What has been the hardest part of having MdDS?

A: Fortunately for me I did not have a long diagnostic journey.  Since I was in the healthcare field and had access to biomedical literature, I was able to search and find the limited articles that had been published through 2015. I read as much as I could and soon realized that there may not be a cure but also that this will not kill me and is not degenerative (worsen over time). And because I was a healthcare provider, researcher and associate professor at a medical/dental school, my doctors listened a little more closely and did not disregard what I was saying. I felt comfortable trying multiple medications, off-label use medical technology, and I was also able to access and had resources to try experimental treatments. I could verbalize my responses to all this input in a manner I hope I was helpful to those trying to take care of me. 

One of the hardest parts of having MdDS is that my symptoms are so unpredictable. The only thing I can count on is that I don’t know when I will get triggered. I had to learn to have an enormous bag of tricks, learn to be vocal about my needs and not dwell on what I cannot do but be grateful for what I can do. I continue to learn to give myself space to have really bad days and to embrace the good days. And to not think this was my fault. It did take me quite a while to mourn the loss of my career which was truly hitting its stride. I was no longer able to competently take care of patients or teach others to do the same. It was a nurse I had co-taught with who noticed and took me aside to say, “You realize you are grieving the loss of your career, right?” That was an eye opener and the start of my journey to coping.

Q4: How have things gotten better?

A: My immediate family has supported me in this journey. I had to learn that because they loved me, they kept trying to “fix” me – from sending me self-help books to saying it was that I was too stressed out or too high an achiever – which had the reverse effect. It made me feel like it was a character fault that I got this. I know better now and can verbalize when I need something. Friends and family are now completely supportive. I am so grateful. 

It was exhausting going to all kinds of doctors, trying all kinds of medications and then having them throw their hands up and say go try someone else I can’t help you. As a former provider myself, I understood the psychology of doctors who get frustrated that they can’t help, but when they promise to stay on the journey with you to support you and then don’t, it is eye opening. I think the providers who were most helpful were the ones who helped me discover and navigate the coping part, in my instance the mental health providers who shared coping mechanisms.

The hidden gem in all this is that 5 years ago I got a dog, Flynn, who was supposed to keep me company during the day. This amazing creature has changed my life in so many ways. He was predicted to be 35 lbs. and has turned out to be about 60 lbs. Because he is heavier and more solid than we thought he would be and he is so intuitive, he learned he is my counterweight. Through a new friend who is a very experienced dog trainer I have learned to use my dog as a service animal. He is always on duty, alerting me to noises that are triggers such as my hairdryer, an airplane, a truck or even background music in a store. Hence my play on words in the title of this piece, Falling for Flynn. He keeps me from wobbling and falling. And I fell in love with him. His total acceptance of me as I am and my abilities and inabilities, willingness and absolute love and dedication to me have changed my world for the better. He has opened doors which would have been challenges both literally and figuratively to me. He helps me feel safe in a world that throws down challenges every minute of every day.

Kudos to my immediate family who supported me even though they could not comprehend what I was going through. And to my friends and community who accept me for who I was and who I am now with my limitations. There will be no more days of providing dental care.

Q5: What personal message do you want to share?

A: Give up on magical thinking and try to stay away from hand wringing and self-pity. They seem to make symptoms worse. Use the support group for helpful hints on ways to navigate symptoms, feelings and interactions with healthcare professionals. I choose to support scientific research to find a cure and if not a cure, a better understanding of how to manage MdDS. 

For me the best approach was to accept, learn to cope, and, ironically, be grateful. Coping is an ongoing process, one which I navigate day to day, moment to moment and sometimes second to second. 

Be kind to yourself and try to surround yourself with empathy wherever you can find it.

Flynn’s Mom
Age at onset: 50s
Onset: motion-related