MdDS: A year of island hopping

For the past year, I’ve spent every day on a boat. When I stand, sit, walk, or lie down, I’m on a boat. When I read, eat, talk, or watch television, I’m on a boat. As I write this, I’m on a boat.

But I actually haven’t been anywhere near a boat in more than a year.

In June of 2016, I disembarked from a calm (and very fun) 7-day cruise. I felt fine, but six hours later, it started. I took a few steps and was struck by strange rocking sensation, as if I was floating in a tube in a water park wave pool.

That day was the beginning of my experience with Mal de Débarquement Syndrome. I didn’t know it a year ago, but MdDS would change my life and send me on a frustrating and emotional journey that continues today.

Since a cruise marked the beginning of my experience, it seems fitting to describe my voyage using islands to represent the stops along the way.

Just keep in mind that these “islands” are really just giant floating docks in the ocean (because even on an island, the rocking sensation doesn’t go away).

Also, many of these islands I visited simultaneously. So yeah, MdDS is weird.

My first port of call is Question and Confusion Island. This is where I stumbled around looking for answers.

“Why am I rocking all of the time? Am I moving? Do you see me moving? Why does it feel like the floor is moving when I’m walking? Why am I bothered by lights, crowds, people moving quickly, patterns, small spaces, grocery stores, loud noises … everything? Why am I so tired? Why can’t I concentrate? What is this? Why don’t I feel it when I’m driving? Is there a cure? When does it go away?”

Naturally, the next stop on this journey was Medical Island. After searching for my symptoms on the Internet, I was pretty sure that I had MdDS but a true diagnosis involves ruling out more common conditions.

I started exploring the island, only to find out I was dropped off without a real map (I think mine was a pirate treasure map printed on a child’s placemat). This island is marked by hundreds of paths carved out of the dense jungle. Oddly enough – as I learned later – the same path can lead to different results and answers for different people.

I’ve explored almost all of the island looking for help: my primary care physician, an ENT, a neurologist, a regular chiropractor, a cervical chiropractor, a physical therapist, a vestibular therapist, two naturopathic doctors, two eye doctors, other specialists, and more. I’ve had hearing tests, a VNG, multiple MRIs, X-rays, extensive bloodwork, and various other tests.

The good news is that I don’t have anything that’s going to kill me. The bad news is that I have MdDS and nothing I’ve tried in terms of treatments or medications has really worked for me (yet). But Medical Island has helped many, so everyone should consider a visit (just maybe don’t buy the season pass like I did).

While I continued to search for medical answers, I found myself regularly visiting Symptom Surprise Island. This is where I started experiencing different symptoms or varying levels of symptoms. My pattern sensitivity went away but was replaced with a strong gravitational pull sensation (feeling like you are magnetized and being dragged forward, backwards, or sideways). My crowd and noise sensitivity was replaced by tinnitus (a lousy trade).

Along with the actual symptoms changing, I also experience fluctuations in the intensity of my symptoms. Good day. Bad day. Calm waters. Rough seas. It’s like someone giving me a different dog to take care of every day. Some days it’s a nice dog that mostly sleeps at my feet but regularly pees on the carpet (so I remember he’s there). Other days, it’s a mean dog that follows me around all day barking, growling, and biting (and still peeing on the carpet).

The worst of my islands comes next, and that’s Emotional Island. Dealing with MdDS isn’t easy, especially early on, when I didn’t know what it was or how to cope. I cried, I screamed, I felt sorry for myself. I wish I could say I don’t do any of those things anymore, but I can’t. I still have difficult days and times when I feel sad and frustrated. I try not to visit this island much (or for very long) as it’s not a good place to be.

Annoyed Acceptance Island is the final stop of my MdDS cruise (so far). This is where I spend most of my time now. I accept that MdDS might continue to be part of my life going forward. I’m not happy about it, and part of me is scared by that idea, but I know I’ll manage somehow.

I try to keep busy and distracted, and I look for ways to tune out MdDS whenever possible. My symptoms are not as bad as they were in the beginning, or I have just adapted to it – I’m honestly not sure.

I’m happy to see some of my friends reach Remission Island, as this gives me and others real hope. I often wonder if I’ll ever get to join them there (or at least visit). Every day that I wake up to the waterless waves, I remember that I’m not there, and I wonder if I’m drifting farther away from that destination.

Living on Annoyed Acceptance Island is not where I ultimately want to be, and I struggle sometimes to turn lemons into lemonade. So far, I’ve just made lemon pudding (and I don’t really like lemon pudding that much).

Of course, I would rather have my old life back, but since I don’t get to choose, I’ll keep trying to make the most of this one.

Sheryl Soffer

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Discussion Policy
  1. clifford knape

    Jen, Knowing you have MdDS is the single most important factor in future medical care. Very few professionals are aware how to care for you. A holistic approach, meditation, calm and patience will be your new best friends. Truth is you must be willing to give up many of the things you love to do. you must modify your daily routine, notify your spouse and family and friends. you are not the same person, you will never be the same! As of now there is no cure. I had recently enjoyed a 4 month remission of symptoms, but after a 1 floor elevator ride( I knew better) its back to square one. Try anything that appeals to you. Sleep often. rest often. stay off the computer. get a filter screen to remove certain wavelengths of light ( big help). ill get back to you on the type of filter you need. Understand that travel by plane, train, boat, amusement rides are forever OFF LIMITS ! riding or driving a vehicle may be your only relief. Please do not despair. Research all possibilities and choose the best fit for you. change Drs. often to get better results. Stand firm in your description of the disease and find pros that are willing to be schooled by you. You are your own best advocate. Regards Clifford. ( 2 years 1 month sufferer, self diagnosed, affirmed through testing)

    1. MdDS Foundation

      How to move forward is different for each of us. How aggressive or passive we choose to approach an MdDS diagnosis is highly individual. Whether to accept or challenge it? Equally individual. There are almost 3,000 members in our support group on Facebook, MdDS Friends. Many are likely to share similarities with you and may have coping strategies that differ from the few mentioned in the blog comments. Jen, we hope you join and benefit from the advice they can offer.

  2. Jen

    Hi! Would you mind sharing any updates about medicines, acupuncture or chiropractic? I’m only 3m in this syndrome but am scared and looking to approach treatment as aggressive as I can. Thanks so much

    1. MdDS Foundation

      Jen, we recommend joining one of our Support Groups where you may ask for advice. Our members are from around the world and have tried various medications and therapies, including acupuncture and chiropractic.

  3. Urs W. Merki

    I am from switzerland. So please excuse my english is not perfect.
    In the beginning of 2017 I was on a worldcruise for 4 month and a couple of days after coming home I was “infected” by MdDS. The yourney was the adventure of my life but If I had known that sad continuation, I would have kept my fingers off it. My way from Island to Island – as you describe it so nice – lasts now already 9 months. It is a way from clinic to clinic, from doc to doc’s, from test to test’s, unceasingly. The only thing I know with certainty, is the final diagnosis MdDS in a very extreme form. To make matters worse, unfortunately, that I can only see in one eye and that hampers a healing very strong.
    The specialists at the Dizziness Center of the University Clinic in Zurich have now advised me to go to New York to the Mount Sinai Clinik. Maybe the pros there can help me.
    I will not lose hope, but the quality of life is already very drastic.
    I thank you for your excellent story and the opportunity to share my version as well. I’ll Keep you informed

  4. Lisa

    Hi Sheryl, you describe your journey so well. I have been on the same journey for 8 years still alternating between anger, acceptance, and hopes for Remission Island. I have never been on a cruise. The doctors believe I may have gotten MdDS from a very bad upper respiratory infection. I had to quit working because of MdDS and having it has changed my life completely. Best of luck to you.

  5. Aida Castrillo

    How well you describe our journey through all this Islands. Like you it was a 5 days cruise Oct 2016 that send me on this journey. I spend most of my last winter in the Emotional Island going through anger (why me ?) and sadness. I am currently on the Acceptance Island and my life is a lot easier. Learning to live with it and try to enjoy life as much as I can. You have written a wonderful piece that describe our journey. May we all continue our journey with hope of remission.

  6. Mike Nelson

    Sheryl, your piece is refreshing, creative and well written, and tells a story that’s so well known among many of us, in your own unique way. I know it’s a very difficult journey for you. I too hope you get to spend some time on the island of Remission.

  7. MJ Miller

    Sheryl –
    Thank you for your story/experience. My experience started after a wonderful Alaskan cruise almost 4 months ago, but now wishing i had never gone on it. I diagnosed myself and then went to the Neurologist. As I learn more about this and how few folks (even doctors) are aware of this syndrome, very frustrating. I’ve done some VOR therapy (based off the Mt Sinai protocol) at my own cost and to no avail – and i’m starting prescription drugs to see if that relieves some symtoms. Everything i read about this seems to last so long that i get very discouraged about my journey. I will continue reading to get some ideas on how to better manage this. i’m also going to try some accupuncture and chiropractic treatments. Hoping we can all meet soon on the island of recovery.

    1. MdDS Foundation

      MJ, you may want to join one of our online support groups. You will find lots of caring people who can share their experiences with you.

  8. Marion L. Schmitke

    Hello Sheryl and my companions on this journey with MdDS. You describe in a very creative way, what I have felt since the summer of 2014 after a wonderful Alaskan cruise. I was all set to book another cruise on the same ship to the Mediterranean. However after a few days, weeks and a month I noted that my “sea legs” were not going away. So yes off to my family GP, next ENT, numerous tests and research on line. The Physical Therapist seemed to be the most confident in providing treatment and possible cure, maybe their tests showed I had improved but I still felt like I was “on the boat.” Most annoying has been the lateral pull that seems to occur when I squat down to pick something up or get an item from the lazy susan (cupboard). Interesting that driving is great as is dancing. I exercise, walk and do Tai Chi regularly. It is a challenge that I accept but still look for a cure! Thank you to all for sharing your stories. It feels so good to know there are others that understand.

    1. Sheryl Soffer

      Thank you for your comment and kind words. I also almost booked my next cruise on the ship — so glad I didn’t. I will never go back on a cruise again. You are right about the pulling sensation being annoying. That comes and goes for me, but I never get used to feeling like I’m being pulled out of bed like I’m in front of a giant vacuum.
      It’s great to find exercise that helps some!
      Take care.

    2. Hi Marion,
      Interesting about the dancing — i was at a wedding a couple weeks ago and danced for a couple hours and felt great! I thought it was quite odd, but i will now categorize that with driving. i do exercise but feel the rocking as i’m doing it.

      1. Brenda Scinto

        So I guess another thing has come to light that helped me. I am a runner, and I definitely feel better (even when I was much worse) when I am exercising, but specifically when I am running. Had almost forgotten that. Going to a wedding next weekend and will be testing out the dancing theory!

  9. Nina Jackson

    Thank you SHERYL This is exactly my experience . I’ve had this for two years It’s better, but I think it’s because I’ve gotten accustomed to it

    It’s a strange malady indeed I wonder why we were the selected ones?

    1. Sheryl Soffer

      Thanks for your comment. As you said, I definitely wonder if I am better than before or somehow have adapted to it. And yeah, I don’t know why any of us got something so weird and rare. I’ve been told several times to play the lottery. Haha — I don’t think it’s a sign of random luck!
      Take care.

  10. clifford knape

    Hi Sheryl, Truth is that MdDS really is a life changing event! At least you were able to enjoy a seven day cruise,(lol) mine was just seven hours in N.Y. harbor 4th July 2016. I followed the same routes you did, self diagnosed after 6 months research, educated my medical staff, they had never had a patient with such an issue. I am currently having lengthy discussions with my ins. co. with the hopes they will pay for treatment at Mt. Sinai Med Center this fall. Fortunately after almost 14 months I have been having more very good days than bad ones. The rocking, bobbing, swaying is not gone, but it is dramatically less than when the symptoms first appeared. I move more slowly, avoid triggers, loud noises, crowds, long stints on the computer, no boats, trains or planes ever again. We travel by car and I do enjoy traveling. The disease is insidious and tends to eat away at you, and your family’s lifestyle if you let it. When having trouble…ask for help! Go to bed early and at regular intervals, restful restorative regular sleep has been a key factor in retaining my sanity! I really believe if you keep a journal, follow simple steps, ALWAYS avoid triggers, you may one day visit Remission Island yourself. When you get there, relax, soak up the sun and have a drink. Enjoy peaceful moments , they can be fleeting, but they restore hope for better days ahead! Regards, Clifford Knape .

    1. Sheryl Soffer

      I’m glad you are having mostly good days now. I’m definitely in a better place than those first few months. You are so right about consistent rest and sleep being helpful. How much I sleep makes a huge difference in my symptoms the next day. Thanks for sharing your advice and encouragement!
      Take care.

  11. Carol Mitchell

    I know just how you feel. I am 73 yrs old and have had mdds for nearly 7 years. Mine didn’t start with a cruise but by plane and very fast elevators in the hotel we were staying in Wendover, Nevada. Rainy windy weather affects me a lot making the everyday Mdds seem better.

    1. Brenda Scinto

      Your comment reminded me of an unexpected trigger for my MdDS. When staying in NYC last fall, we were in a Marriott near Time Square that had speed elevators and that was the worst trigger I had experienced and I had a backlash for several weeks. I seem to be able to handle plane travel, but no more speed elevators!

    2. Mary Braiterman

      I am 5 1/2 years out. Two week Caribbean cruise. Rain, fountains and dishwashers bother me. I am much better, but it is symyomatic. Anxiety makes it worse, not eating at meal times or not getting good sleep effect me.

      If I ver load on eyes or ears, I have an episode f body shutting down and have to lay down, relax my body so it can “unload the overload”.

    3. Hi, I’m 64 and have had MdDS since January, 2012. Like you, it started after a plane trip & lots of elevator rides in both my hotel & the hospital where my mother was being treated. It was a very stressful trip too. Unlike younger people, my symptoms have worsened to the point that I am at a 7 or 8 most days. I also have other medical issues that exacerbate my symptoms – neuropathy in my left foot being the worst. Only in the last year have members of my family accepted that this isn’t just a mental issue. I pray for all MdDS sufferers that someone will come up with a solid, affordable cure (even remission) for everyone.

    4. Sheryl Soffer

      It’s interesting how MdDS can start is so many different ways. I’ve heard of a lot of people being impacted by the weather once they have MdDS. I haven’t experienced that, but we get very little real “weather” in Arizona,

  12. Sandra Brown

    Cheryl has become the chronicler, the poet, the lamenter of our secret life with the beast. I love her and her steadfast friendship to all of us who journey with her. Without her and our ‘ships of fools’ I would be lost or dead.

    1. Sheryl Soffer

      Thank you for your sweet words. I always smile when I see messages from you, and getting to meet people like you has definitely been the upside of MdDS! Hugs and love to you, my friend.

  13. Bethann Johnson

    Welcome to Annoyed Acceptance Island. I’ve been here for 5 years in addition to 4 shorter visits in the past 15 years. Now that I have some good days, it’s not such a bad place to be. Thanks for your creative description!

    1. Sheryl Soffer

      Thank you. I’m glad you have some good days. I do too. I hope everyone who suffers with MdDS finds an island they can live on. Take care.

  14. Kari Palazzolo

    Wow. It’s remarkable the similarities in all our stories. I could have written my story exactly as Sheryl did — except for how it started. Mine was “spontaneous onset” — not caused by a motion event. It began in May, 2009 (at age 40), and after all the medical appointments/tests (and many more) Sheryl described (including multiple trips to Cleveland Clinic, Detroit, Mayo in Minnesota, Northwestern in Chicago, etc.), I was finally diagnosed 2 years later by Dr. Staab at the Mayo Clinic in Minnesota after mentioning that I felt better when moving in a car. That was the “ah ha” moment I was waiting for. I completely agree with Bill Hazen — I am depending on the Lord to cure me as they have not discovered anything solid in the medical community to help us (permanently). [redacted]. Dr. Cha is working very hard to find something to give us all relief. Awareness is key — as most doctors have never heard of this condition and many people are misdiagnosed and subjected to treatment/medications that can be harmful to them in the long run (I was a guinea pig for a year taking medications that had terrible side effects). Keep the faith and keep your chins up. If we have to live with this for the rest of our lives, at least we know it won’t kill us. Not exactly the note I wanted to end on . . . but the sooner we accept it, the sooner we can try to get on with our lives.

    1. MdDS Foundation

      This comment has been edited by the moderator. Until the research is complete, we cannot share clinical trial participant experiences as the information can influence results for other participants.

    2. Sheryl Soffer

      I’m sorry to hear that it took so long for you to get diagnosed. That had to be so frustrating. I think it’s so much harder for those people with a spontaneous onset. I was lucky to figure out pretty quickly what I had because it immediately followed a cruise.
      You are right about awareness. We definitely need to keep spreading the work about MdDS — that’s the way we’ll have more treatments (and hopefully a cure). Take care.

  15. Kerryn Lyon

    I’m coming at this condition from a completely different angle and despite still having the symptoms of MDdS ‘technically’ I don’t suffer it – but at one stage myself and my Doctor was so convinced that I did – I ended up participating in a trans cranial stimulation trial for it.
    I understand most of you have seen enough Doctors to eliminate what I suffer from but I thought this was at least worth a very subjective mention.
    I have the exact same symptoms – constant bobbing up and down – waves going up and down my body – feeling like a blob of jelly – only relieved by being in a moving vehicle.
    But I also have SLE (Systemic Lupus Erythematosus) . And recently I had advice from a Lupus specialist that these MDdS symptoms – for me at least, has been caused by damage to peripheral nerves coming away from my spine which has caused my nervous system to be unable to know where my body is in space. This was in good part caused by a prolonged un -diagnosed B12 deficiency. So please make sure you get your B12 tested.
    Also – recently I’ve had to go on some blood pressure medications and I’ve found this to help with my MDdS ‘like’ symptoms – as does getting enough rest and avoiding anxiety. (anything neurological seems to require avoidance of anxiety)
    Anyway – Last time I was at the MDdS website I saw having a positive ‘ANA’ excludes you from this condition [paraphrased]. Lupus causes a positive ANA (Anti -nuclear antibody) These are confused antibodies that attack your own tissues which includes your own nervous system. This is also diagnosed via various blood tests.
    Now having said all this – I seriously doubt any of you suffer from either of these conditions. I think you’d probably clearly know about it if you did. You would feel really unwell. (I’m 49 years old and its been obvious I’ve had Lupus since the age of 14)
    My reasoning is just this. It wouldn’t hurt to have these things tested just to be on the safe side – especially the B12 levels.

  16. Brenda Scinto

    Your eloquently written post brought me right back to the first year of my MdDS which was in 2013 following a Mediterranean cruise. I have never officially posted my journey, but I feel I should in order to provide some hope to those early on in their experience. I too bought the medical season pass and saw every doctor possible starting with my primary, on to neurologist, promoted to a brain specialist and on to numerous others all in vain. After all standard avenues failed, I finished off with holistic and natural treatments. I can honestly say that the first thing that helped was a relaxation and ‘grounding’ reiki session that showed the tiniest bit of relief, but it was enough to make me follow this path. I began doing yoga faithfully and paid very close attention to getting enough sleep (getting overtired is still one of my triggers to this day) and my symptoms slowly improved over the first year. I still have recurrences when I travel (I will never take a cruise again, but do travel by plane) which I feel is related more to the being off schedule and overtired than the travel itself, but I am lucky to only have had a few full blown relapses which are definitely brought on by stress. The last four years have been a research project for me to decipher what helps, what makes it worse and how to best live with this condition which I am accepting will never go away, but that I am able to live with. My suggestion is to control the things you can: healthy diet, exercise and get the most sleep you can. The thing that helped me most was consistency with yoga – twice a week if possible for the calming, grounding and centering effects that it had on me. Side note to all of this: my daughter suffered a pretty severe concussion this year and developed post-concussive syndrome. Her symptoms were remarkably similar to what I suffer with MdDS.

    1. Sheryl Soffer

      Thank you for sharing some of your experiences. MdDS is definitely a research project! I’m in a better place than I was in those first few months, and I’m determined to keep improving physically and mentally. You are so right about the sleep aspect. Not getting enough sleep makes symptoms so much worse for me (and everyone I’ve spoken to with MdDS).
      I like your advice about the yoga. I’ve done it a few times and I think it’s helpful on several levels.
      I would encourage you to write about your experience with MdDS. We need more stories and voices!
      I hope you continue to improve. Take care.

  17. Rosemary Holland

    Thank you Sheryl, I had it after I fainted on 9 Jan 2016.
    I am improving now very slowly.
    Keep doing the things you always liked no matter how difficult, retrain your brain.
    I kept up my painting and now I am even back to sequence dancing. A friend who has similar is back to cycling and playing tennis.
    Listen at night to relaxing CDs or classical music for the tinnitus, it naturalizes in time and you won’t hear it.
    Do not let yourself be stressed….breathe and do exercises best you can.
    It will improve. I’m hoping it will go as sometimes I feel normal again.
    Kindest Regards Rosemary

    1. Sheryl Soffer

      Thank you for your response and great suggestions! Most days I feel like I’m improving, but it’s a slow and inconsistent process. I did try some painting this year and really liked it! I definitely want to do some more. I also love biking outside, as I don’t feel any symptoms when cycling. I live in Arizona, so we’re heading into our outside season now!
      I haven’t tried the classical music, but that also sounds like a great idea.
      Thank you so much for your advice.

  18. Lorraine Acker

    ^Your piece discribes mdDS very well. Iam praying for a cure for us all. Thank you for sharing.

    1. Sheryl Soffer

      Thank you, Lorraine!

  19. Kathy Bruner

    We just returned from the American Academy of Family Practice meeting in San Antonio. We attended every meeting dealing with dizziness as our nurse daughter suffers with MdDS. None of the presenters had ever heard of this syndrome. MdDS syndrome can benefit from you all being on social media ! Please continue to share your stories.
    The island metaphor was excellent. We love our daughter and this helped us to understand how awful it is to live with this condition.

    1. MdDS Foundation

      We sure hope you brought our brochures with you, Kathy. To request printed brochures, send a request with quantity needed and complete mailing address to A volunteer will get them in the mail as soon as possible. Meanwhile, be sure to follow us on Facebook, Twitter, YouTube, and Instagram!

    2. Sheryl Soffer

      I’m glad you liked the article and thrilled to hear that you are spreading the word about MdDS! You are helping your daughter and so many others by telling healthcare providers about MdDS.
      Thank you!

  20. Nancy Patterson

    You wrote your article in a wonderfully unique way. Thank you for your perspective on MdDS. I am 22 years in, haven’t found my island yet. Maybe it’s the retirement island for the old or resigned.

    1. Sheryl Soffer

      Thank you. Carolyn (in the comment below) wrote about Relaxation Island. I hope your retirement island can be that after all those years with MdDS. Take care.

  21. Carolyn S schregel

    I love your article. I believe it represents a common set of experiences by most of the MdDS suffers, certainly mine. Not to be negative but realistic. I hit the Island of Acceptance after 8 years of trying everything suggested and now, after 24 years, I just don’t expect things to get better. I do know that my boat ride is continual every day and gets rougher as I wear down during the course of the day. Relief only comes when I am in a moving vehicle of some type. At age 81 it is getting tricky to stay upright and safe by evening time but it is certainly better than the plight of many of my friends who have degenerative diseases. Go to the Island of Relaxation and hope for the best.

    1. Sheryl Soffer

      I’m so sorry to hear that you’ve had MdDS for so long. That had to be so frustrating to look for answers so many years ago (when probably no one had encountered MdDS before). At least there’s more awareness now.
      Like you, I also feel more symptoms in the late afternoon and evening. I do like the idea of Relaxation Island. I think we all need more of that! Thank you for your kind words and I wish you the best.

  22. Jane selby

    I loved this because it is exactly what I have been through. I’ve had Mdds for 4 yrs, tried everything suggested and there has been no change. My symptoms are slightly worse if any thing. After I heard about 3pd I’ve also considered that I might have that condition. Very frustrating!!

    1. Sheryl Soffer

      I know what you mean. The trial and error can be exhausting. Frustrating is the right word. I hope you find some solutions and start to feel better.

  23. J fog

    Well that’s my story too. Except mine was a train and I was hit by a car hours after getting off the train.
    It’s been 4 years of riding the waves.
    Thanks for sharing
    J fog

    1. Sheryl Soffer

      J fog-
      I hope being hit by a car was a metaphor for MdDS — if not, that would make for the worst day ever.
      Hope you are doing okay and that your symptoms are manageable. Take care.

  24. Bill Hazen

    God Bless you, Sheryl. Well written, conceptually and creatively. I’m depending on the Lord to cure my MdDS as, after 5 1/2 years, it is progressing daily. Have been to Mt. Sinai to no avail and have been turned down by University of Oklahoma experimental program due to age. Please, keep your faith.

    1. Sheryl Soffer

      Thank you for your nice comment. I’m so sorry that your MdDS is progressing. I hope you find some relief soon.

  25. Lisa Shusterman

    Sheryl, well said (written). I’m so sorry that you have joined our ranks and of course I wish for you what I wish for all of us – a cure, or, at a minimum, remission

    1. Sheryl Soffer

      Thanks, Lisa.
      I’m confident that they will find a cure someday. I keep writing and sharing my experiences in part to draw more attention to MdDS. Thanks for your kind words.

  26. Sandy

    It does get better. Mine started in It all
    Began in January 2010 and here I am today still experiencing some symptoms but the symptoms I have are livable.
    I can fly, but long drives still are a challenge that cost me at night in bed. (Feels like sleeping on a cruise ship!)
    I remind myself it could be a whole lot worse!

    1. Sheryl Soffer

      Sandy- You are right that it does get better. I’m also able to fly without problems (slight increase in symptoms for the rest of the day, and then back to normal). I am definitely grateful for that!

  27. Sue Haibeck

    Very descriptive of this condition many share!

    1. Sheryl Soffer

      Thank you, Sue.

  28. Dave Eason

    Great post – I love the use of the Islands to explain our story.

    1. Sheryl Soffer

      Thank you, Dave.

  29. sharon lindsley

    I so love your story. I can so relate – except I did not travel to get my MdDS – I had a few extreme events in succession, is the only thing I can think of how I was blessed.. It’s not really sarcastic using the word these symptoms have cause me to go deeper within and develop spiritual..since I can’t find a physical cure and the Dr.s don’t know anything all I can hope for is a miracle..So I continue to work on me inside and out..
    Thanks for your story
    Sharon Lindsley

    1. Sheryl Soffer

      Sharon- I’m happy to hear that you’ve found a blessing or sorts in MdDS. For me, I think it’s made me more empathetic, and has helped me focus more on the things and people I enjoy. Ultimately, we have to find happiness no matter what is thrown at us. Best wishes to you.

  30. Susan

    Exactly my first year symptoms too, how precise and descriptively well you have written your (and my) story.
    Sorry to tell you I started 16/10/04. and still going. I bet you can quote the date you started too! I am really very sorry you are part of this group.
    This week a neighbour invited her longtime friend and me for coffee. The first person I have ever actually met with MdDS. She has been in remission for a year, so glad for her. All 3 of my daughters have experienced it. One, regularly every 2 years, for bouts of 3 months long, each time. She has just flown back from France but is so far free, this time. Always travel related.
    Thank you for sharing the story, that changed our lives, over 13 years ago. Hopefully you will experience remission, soon and for a very long time.
    I now am the rock my husband needs, now he has been smitten with Posterior Cortical Atrophy! Cruel.

    1. Sheryl Soffer

      So sorry to hear about your husband. I hope you have the support and energy to help him.
      That’s interesting (and sad) that your daughters have all experienced some MdDS. You have to wonder if there’s a genetic connection or sensitivity or some kind (at least for your family). So many questions still with MdDS.
      And yes, you are correct is guessing that I know my exact MdDS anniversary (06/05/16). I don’t think I’ve connected with anyone yet who doesn’t have their exact date etched into memory!
      Take care.

      1. JoAnn impastato

        Sandra, I’m with you ! What a great way to travel these islands with a real writer! I’m now 81 and been plagued with all of these symptoms for ten yrs. no remissions & increased intensity . I wish I could write my story but I can’t even concentrate long enough to do so as I get worse just reading the replies .

  31. Elaine Schlissel

    Your piece is extraordinary. The metaphor of MdDS and a journey to many islands is creative and will “vibrate” with many of us. ( I couldn’t help myself !).

    Thank you for sharing your story.

    1. Sheryl Soffer

      Thank you, Elaine!

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