Intro and Difficult Question

[DancesWDolphins]

Hello! My wife and I are sailors of 15+ years. We have been fitting our 38' Hunter for several years here on a N Texas lake and are in the process of moving our boat to the coast - 2 years from retiring and cruising. We have significant coastal and Caribbean experience.

My question: my wife was diagnosed with MS today. It's still all sinking in. One of our first thoughts: can we still cut the lines? Anyone out there with MS cruising?


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[SVNeko]

I don't have an answer for you, but wanted to pass along my sympathies and best wishes. I hope you find a way.

[onestepcsy37]

My sailing buddy learned he had MS when he turned 40. He spent the next four years cruising the Bahamas and Caribbean. He only came back, he told me, because there were some new promising drugs coming along and he decided to give that a try. I helped him sell his boat. He moved home to New Mexico so I lost track of him.

My sister in law was also diagnosed at 40. She died recently at 75. Her last few years were not good, BUT, she refused to take most of the drugs offered her because of the perceived side effects. She was actually very mobile until she was about 60.

My take? Go Now. Leave Tomorrow.

[oldragbaggers]

Originally Posted by DancesWDolphins

Hello! My wife and I are sailors of 15+ years. We have been fitting our 38' Hunter for several years here on a N Texas lake and are in the process of moving our boat to the coast - 2 years from retiring and cruising. We have significant coastal and Caribbean experience.

My question: my wife was diagnosed with MS today. It's still all sinking in. One of our first thoughts: can we still cut the lines? Anyone out there with MS cruising?


Sent from my iPhone using Cruisers Sailing Forum

I debated whether to put this on the public forum or send it to you privately, but I thought that maybe you and your wife might not be the only ones struggling with a question like this, and if my experience can be an encouragement to someone I want to just put it out there. So here goes.

In May of 2010 I had my first "episode" (relapse). A virtual grocery list of weird symptoms, and I won't go into all of them, but among them a dropped foot that just dragged, balance issues, and an extreme reaction to heat/sunlight. We had a Cape Dory 28 at the time that we had spent over 2 years working on and we were planning to cruise on it when we retired . The sailing season had just started and we were excited to get out on the Bay but every time we went out I had something happen, either stumbling and hurting myself, struggling to get on/off the boat, or such an extreme reaction to the heat (even though it wasn't actually that hot out) that I would end up laying almost unconscious on the deck. The heat also made me very disoriented and confused.

After an MRI, which showed several brain lesions, and a rash of other tests, I was told I probably had MS. The bad thing about MS, even once they diagnose it, is that they still can't tell you a lot about how it's going to play out. It's different for every person, and even for the same person every relapse is different (assuming you have relapsing/remitting and not progressive). I wasn't getting a lot of communication from my doctor at the time either so the whole thing was a mystery to us. We didn't really understand it but we were scared about me being on the boat so, with much sadness, we put our beloved Sojourner up for sale, thinking that my sailing days were done. This was extremely emotional for us because Lance and I had been dreaming of, and planning for, cruising in retirement almost since the day we got married, over 30 years. We believed that everything we had ever hoped for was now lost to us.

Our boat was gorgeous. She sold in less than a week which was unfortunate because my episode passed in a couple of months and I returned pretty much to normal. There were maybe a couple of things that lingered a while longer, but basically it was just stuff that was a "little off." Mostly I was fully functioning the same as I ever had and went back to all my normal activities. I had a follow up with a different neurologist a couple of months later and he said it was possible I didn't have MS at all. Three years passed without another relapse so I started to believe he was right. Of course we had started regretting selling our boat as soon as my relapse had passed, but it was too late because she was gone.

The memory of the relapse had left me a little gun shy about getting into another sailboat so we got a little power boat to play with and I started building a teardrop camper. That kept us occupied for awhile but eventually the sailing bug just started biting too hard and since I had been well for such a long time we started looking at sailboats again.

Then last August I had another relapse. More tests, additional lesions, and again I am told that I probably do have MS. In a couple of months the episode passed and I returned more or less to full function again and have been so ever since, almost a year now. I work really hard to do everything I can to keep myself healthy with good diet, exercise, adequate rest and lots of sunlight (vitamin D is so important, perfect for the sailor, right??).

Why am I telling you this long drawn out story? Because for the 3 years in between those 2 episodes and for the year that has passed since the last one I have been normal and could have been sailing.

My husband and I have turned this question over and over as we have struggled with how we should go forward. I do not know how your wife's MS is manifesting itself, whether it is relapsing/remitting or progressive, how severe her symptoms are, how fully she recovers from them, or how long of a time span she has between relapses. These are all things that the two of you will need to evaluate to make your decision. My most recent neurologist tells me my prognosis is excellent because of my age when it started (late 50's), the length of time between relapses and my nearly full recovery in between. For these reasons we have decided that we are not putting our life or our dream on hold. We have gotten ourselves another Cape Dory and are in the process of refitting it for cruising. We have 1 year and 9 months to go to retirement and we plan to have her ready.

Keeping me healthy is just as much a part of our retirement plan as saving money and getting the boat ready. We have modified our cruising plans somewhat. We plan to stick near to the coast of the U.S. If I get sick we will find a nice marina and wait it out. When I feel better we'll go again. If it gets to the point that this plan no longer works for us we'll figure it out then, but we're not ready to give up just yet.

I wish your wife the very best. Tell her to check out this lady https://www.facebook.com/aurora.gonz...lello1?fref=ts. She has been controlling her MS with exercise. Have her check into the Swank MS diet as well. And best of luck to the two of you as you make this important decision. I hope you will find a way to still make your dreams work for you.

[Scot McPherson]

My friend who has MS had to move to Colorado to be in and arid environment. I don't really know how it affected him but I understand MS is a very personal disease and everyone experiences differently.

Best wishes to you and your wife.

[Sun and Moon]

Hello Dances,
First on behalf of everyone I would like to thank Becky for sharing her experience. First hand information is invaluable for anyone finding themselves in this challenging situation.

I've been a practicing acupuncturist for over 20 years and I've had perhaps a half dozen MS patients. I'm also familiar with maybe twice that number of colleagues' patients. Becky's worse/better/worse/better story isn't unusual. It's usually impossible to say what causes the improvements or the relapses, just as it's usually impossible to say what caused the MS in the first place. I've seen people successfully use almost every therapy imaginable, and I've also seen the same therapies fail for others. From a patient's perspective, in this respect MS is one of the most difficult issues to sort out.

I think Becky's advice is spot on - do what you can to stay healthy, investigate many therapies to find what works for you, and keep living your life.

Best of luck,
Jim

[oldragbaggers]

Thank you, Jim (Sun and Moon), for those nice comments.

I just wanted to add one thing, and this is more the point I wanted to stress in my first post but probably didn't say it as clearly as I wanted to. Don't make the same mistake we did and jump to a rash, emotional decision right now. It's easy to react out of fear. Being told you have MS is damned scary. We did that when I was first diagnosed, without really knowing what the situation was going to be, and it cost us our boat and a lot of heartbreak. We should have waited, a much longer time, to see how things were really going to play out, before making such an important decision.

I have 3 other friends with MS (you wouldn't think it would be so common) and they are all like me. One is a school teacher and has had it for at least 7 years and deals with it so well that none of her co workers even know about it. Don't assume it is going to keep you from living your life, even a very active life like cruising, until you have irrefutable evidence to the contrary.

[DancesWDolphins]

Becky: To you and everyone else - a very heart felt thank you.

After a year of frustration and trying to figure out what was wrong, all the pieces are falling into place. Yes, this is relapsing/remitting and it answers so many questions. We just had a discussion about it and agreed that at least knowing "what" gives us the chance to move past the "why" and to the future.

So many tests, doctor visits, questions...

My wife, just turned 50, is a very strong (and stubborn) person. She is a fighter and will still probably outlive me. That may be good because I am a smart=a$$ (but in a good way).....

At this point, we will keep the boat. Move it to the gulf coast and see what life brings. We never planned to cross the Atlantic or Pacific - just up/down the coast and through the Caribbean chain. If we can do that with her comfortable, safe, and happy - then we are good. Medicals and their cost are a big question.

Prayers to all and thank you.

[oldragbaggers]

Originally Posted by DancesWDolphins

Becky: To you and everyone else - a very heart felt thank you.

After a year of frustration and trying to figure out what was wrong, all the pieces are falling into place. Yes, this is relapsing/remitting and it answers so many questions. We just had a discussion about it and agreed that at least knowing "what" gives us the chance to move past the "why" and to the future.

So many tests, doctor visits, questions...

My wife, just turned 50, is a very strong (and stubborn) person. She is a fighter and will still probably outlive me. That may be good because I am a smart=a$$ (but in a good way).....

At this point, we will keep the boat. Move it to the gulf coast and see what life brings. We never planned to cross the Atlantic or Pacific - just up/down the coast and through the Caribbean chain. If we can do that with her comfortable, safe, and happy - then we are good. Medicals and their cost are a big question.

Prayers to all and thank you.

I hope very much that our paths cross out there.

[Stumble]

I have no comment on your illness other than wishing you all the best.

But I do want to point out that thru most of the Carribean you are never more than a few hours from an airport with a direct flight to the US. Again I have no experience with MS and certainly don't want to trivialize it, but with care you should be able to cruise full time and stay within reach of high quality medical care.

[oldragbaggers]

Originally Posted by Stumble

I have no comment on your illness other than wishing you all the best.

But I do want to point out that thru most of the Carribean you are never more than a few hours from an airport with a direct flight to the US. Again I have no experience with MS and certainly don't want to trivialize it, but with care you should be able to cruise full time and stay within reach of high quality medical care.

So far the only thing that the medical establishment has been able to do for me is to run tests to try and figure out what was wrong. So far there has been nothing done for any of the symptoms so I have not really considered being near medical care much of an issue. More the issue is just knowing we could get to and stay some place comfortable to wait it out when I don't feel well. Maybe that will change in the future.

[JPA Cate]

Originally Posted by oldragbaggers

I debated whether to put this on the public forum or send it to you privately, but I thought that maybe you and your wife might not be the only ones struggling with a question like this, and if my experience can be an encouragement to someone I want to just put it out there. So here goes.

In May of 2010 I had my first "episode" (relapse). A virtual grocery list of weird symptoms, and I won't go into all of them, but among them a dropped foot that just dragged, balance issues, and an extreme reaction to heat/sunlight. We had a Cape Dory 28 at the time that we had spent over 2 years working on and we were planning to cruise on it when we retired . The sailing season had just started and we were excited to get out on the Bay but every time we went out I had something happen, either stumbling and hurting myself, struggling to get on/off the boat, or such an extreme reaction to the heat (even though it wasn't actually that hot out) that I would end up laying almost unconscious on the deck. The heat also made me very disoriented and confused.

After an MRI, which showed several brain lesions, and a rash of other tests, I was told I probably had MS. The bad thing about MS, even once they diagnose it, is that they still can't tell you a lot about how it's going to play out. It's different for every person, and even for the same person every relapse is different (assuming you have relapsing/remitting and not progressive). I wasn't getting a lot of communication from my doctor at the time either so the whole thing was a mystery to us. We didn't really understand it but we were scared about me being on the boat so, with much sadness, we put our beloved Sojourner up for sale, thinking that my sailing days were done. This was extremely emotional for us because Lance and I had been dreaming of, and planning for, cruising in retirement almost since the day we got married, over 30 years. We believed that everything we had ever hoped for was now lost to us.

Our boat was gorgeous. She sold in less than a week which was unfortunate because my episode passed in a couple of months and I returned pretty much to normal. There were maybe a couple of things that lingered a while longer, but basically it was just stuff that was a "little off." Mostly I was fully functioning the same as I ever had and went back to all my normal activities. I had a follow up with a different neurologist a couple of months later and he said it was possible I didn't have MS at all. Three years passed without another relapse so I started to believe he was right. Of course we had started regretting selling our boat as soon as my relapse had passed, but it was too late because she was gone.

The memory of the relapse had left me a little gun shy about getting into another sailboat so we got a little power boat to play with and I started building a teardrop camper. That kept us occupied for awhile but eventually the sailing bug just started biting too hard and since I had been well for such a long time we started looking at sailboats again.

Then last August I had another relapse. More tests, additional lesions, and again I am told that I probably do have MS. In a couple of months the episode passed and I returned more or less to full function again and have been so ever since, almost a year now. I work really hard to do everything I can to keep myself healthy with good diet, exercise, adequate rest and lots of sunlight (vitamin D is so important, perfect for the sailor, right??).

Why am I telling you this long drawn out story? Because for the 3 years in between those 2 episodes and for the year that has passed since the last one I have been normal and could have been sailing.

My husband and I have turned this question over and over as we have struggled with how we should go forward. I do not know how your wife's MS is manifesting itself, whether it is relapsing/remitting or progressive, how severe her symptoms are, how fully she recovers from them, or how long of a time span she has between relapses. These are all things that the two of you will need to evaluate to make your decision. My most recent neurologist tells me my prognosis is excellent because of my age when it started (late 50's), the length of time between relapses and my nearly full recovery in between. For these reasons we have decided that we are not putting our life or our dream on hold. We have gotten ourselves another Cape Dory and are in the process of refitting it for cruising. We have 1 year and 9 months to go to retirement and we plan to have her ready.

Keeping me healthy is just as much a part of our retirement plan as saving money and getting the boat ready. We have modified our cruising plans somewhat. We plan to stick near to the coast of the U.S. If I get sick we will find a nice marina and wait it out. When I feel better we'll go again. If it gets to the point that this plan no longer works for us we'll figure it out then, but we're not ready to give up just yet.

I wish your wife the very best. Tell her to check out this lady https://www.facebook.com/aurora.gonz...lello1?fref=ts. She has been controlling her MS with exercise. Have her check into the Swank MS diet as well. And best of luck to the two of you as you make this important decision. I hope you will find a way to still make your dreams work for you.

I have not yet finished reading this thread, but I wanted to thank you, Becky, for such an eloquent and sagacious post.

Ann

[ozskipper]

Do it while you can.. YES, Go. Lifes too short. Even if it means shorter sailing. But while she can, help her live her life to the fullest

[tdh1849]

Gotta love this place !!!!!!!

Sailors taking care of other sailors.

[roland stockham]

Nobody sits in a nursing home regretting what they DID do, only what they DIDN'T. Do it while you can and give it up only when (or if) you can't. None of us know how long we have on earth and the only difference is that someone has perhaps put a name to the truck that will run you down, on the other hand you could still get run down by a truck tomorrow same as me. Good luck and enjoy life