Cruising

I was diagnosed nearly 2 years ago and am managing symptoms quite well at the moment. I am on sinemet 25/100 3x per day. Last October I went on a weeks cruise which was lovely but when I got off the ship I felt like I was walking on a trampoline for about a week after (known as Mal de Debarquement Syndrome). After a week it went completely. We are now booked on another cruise in July and I thought I would look up ways to try and avoid it happening again. I am worried now as it can come back and be difficult to get over a second time. It is too late to cancel without losing most of our money. Has anyone else experienced similar and have any advice? Maybe I should go to my Dr and see if I can cancel on medical grounds. I feel stupid for not checking before. I guess the effect PD has on balance will have an impact on this condition. I would like to go but don't want to make things worse for myself. I really don't know what to do!

10 Replies

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  • I can understand your concerns having checked it out on line. It doesnt appear to have any connection to PD and seems more similar to meniers. There was one comment on possible cause.

    "At present there is only one leading clinical investigator world-wide who seeks to improve our understanding of the causes and cures for MdDS. Her name is Dr Yoon-Hee Cha and she is based in America. In April 2012 she presented an abstract of her current findings at the annual meeting of the American Academy of Neurology." More info here.....

    mdds.org.uk/causes/

    i would want to talk to a doctor for advice but in the end it will be your decision about relative risk.

  • BEEN DIAGNOSED BY 2 NEUROS, SINEMET DOES A GOOD JOB, THANK U

  • I have gone on a couple of cruises and every time I come back I get that funny feeling you speak of. It usually only last a day or two for me and then goes away. It never occurred to me that it could be permanent and I didn't think it could. My husband was in the Navy and this is a common phenomenon for everyone that is on a ship for awhile, not just PD people. I would never let that be a reason to not go on a cruise. But then it's your decision.

  • For me it lasted nearly a week and when I googled it it said it can be permanent. I guess though if you took heed of all the scare stories on the net you wouldn't go anywhere. I was wondering if it would make a difference if we got off the ship at every stop and spent a lot more time on shore, the last time we only got off for a couple of hours and then not at every stop. Just really looking for advise on how best to prevent it. Thanks for your reply.

  • I'm betting your idea is right, it would make a difference if you got off the ship at each port and walked around on land. I say ask the doctor, it his/her job to answer your questions.

    I use the Portal to my doctor to ask questions like this. It works good for me.

  • Go on the cruise and enjoy yourself.

  • Yes..go... the combination of PD, high seas and a touch of Scotch whiskey is tuff but worth it... crossed pacific last year. Atlantic in Sept...like arwenmark, enjoy

  • I have had Pd since 1992. I gave up my high-powered job the day I was diagnosed. My late wife and I started cruising in 1996 and we did 11 cruises together and since she passed away in 2011, I got married again 3 years later and my new wife and I have been on 2 cruises and are about to go on another one, for 24 days.

    Since 2002, I have no longer needed to take any Pd medication, which does nothing to slow down the progression of Pd. At the age of 82, I now live a normal life, even though I still have Pd.

    Why am I telling you this? I also found that walking on ground that was not moving was rather difficult. But when I had learned how to consciously control my walking, that problem disappeared.

    Look at my website, reverseparkinsons.net and read all about conscious walking. It costs nothing!

  • Thanks I will check it out 😊

  • THANK U, I AM CONTROLLING WELL MY PD NOW. I LISTEN TO MY BRAIN AND WITH ME MY NEW DOSAGE OF SINEMET IT HELPS ME A LOT. FEEL MUCH BETTER BECAUSE NOW I UNDERSTAND IT MORE

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