"Sailing Sclerosis," voyage around the world with people with MS as the crew

[SalpalSally]

Hey Ann, aren't you in Boston, the final destination.
You could meet the ship and take pictures? FUN!!

[Gabriella7]

This is just a hoax paid for by Biogen and other sponsors who have donated money. Every time I go into the MS Center the Biogen representative is there talking with one of the neurologists. The main symptoms with MS are fatigue, balance problems, and weakness so how in the world could these people do this job?

I looked at the other sites.....the reason for the voyage is "to change the perception of MS". This is a non-profit organization (headed up by a MS doctor who is the connection with Biogen). This is where they have spent their donation monies purchasing the yacht and recruiting people with MS (?) to go on the trip in order to change the public's perception of MS!!! Biogen is involved in order to change public perception of how well their pharmaceuticals change the health of people with MS.

This is wrong on so many fronts!!!

Blessings,
Gabriella

[agate]

In all fairness to the efforts being made by this organization, they are putting people in categories based on their level of skill and experience in sailing and their level of physical capacity--as well as emotional health apparently, for there is a fairly extensive psychological questionnaire included with the application materials. The voyages vary from about 4 days to 5-6 weeks depending on what what they decide you're up to--and probably also on what you would like.

Not everyone is going around the world. There are many other voyages to choose from.

And there are definitely experienced yachtspeople who don't have MS on board:

Oceans of Hope is unique in being crewed by a mix of people with MS and professional sailors.

[Cherie]

We have several sessions of sailing lessons for those with disability here including para and quadriplegics. There are several PWMS who are wheelchair bound who sail quite successfully. last summer the MS Dream Center did 4 classes of 10 people each and this summer they have increased it to twice that.

[Gabriella7]

Whatever floats your boat as they say. It is fine if PWMS want to learn to sail, parasail, snowski, or whatever on their own time but this "Sclerosis Sailing" just doesn't prove anything. A non-profit organization who raises monies to partner with BigPharma and sail around the world to prove "what"?

In all fairness to the majority of people who are living with MS and all the other non-profit organizations who are raising money for research and future treatments for MS....changing the public's perception of MS is only going to reduce the amount of money that the public is willing to donate.

You don't prove how disabling this disease can be by utilizing basically healthy PWMS to work on a yacht sailing around the world. In the past monies have been raised by showing the ugliness and desperation of a disease (think of AIDS & Cancer) and the numbers of people who have died as a result.

But these non-profit organizations have raised enough to find treatments and cures for AIDS & some CANCERs that really work. The MS organizations are still trying to raise money for research.

JMHO

Gabriella

[agate]

Whatever floats your boat as they say.

LOL!


One problem with MS is that it's such a tricky disease. It affects the central nervous system, and that is everything when you come down to it. Because it's hitting the CNS, it can have an impact on any part or system in our body--and sometimes on just about all of them. They just don't know that much yet about the CNS.

The objective of the Sailing Sclerosis group is to raise awareness of how much people with MS can do ("empowerment")--perhaps to make us more employable, or at least to help prevent those who have MS from giving up on pursuing some of our dreams.

There's a lot to be said for this. Time and time again I've seen posts by people who have been hit with an MS dx, or even just a possible MS dx, and they're assuming it's curtains for them, soon. Or they're sure they'll be bedbound within a few months. The suicide rate among people with MS is known to be high. I have known of a couple of suicides by people with MS, in fact. Depression and a feeling of failure and uselessness are severe problems.

Maybe the sailing expeditions are meant to balance the scales a bit by showing what can be done even with MS.

It's unfortunate that Biogen is so prominently behind this though. If you look at the Facebook page for this project, you'll see Biogen Idec very conspicuously displayed there. It's as if Biogen is trying to establish itself as THE provider of MS drugs, the name people will be sure to remember.

[Frog42]

Can't figure out how to delete or if it's even possible.

[Gabriella7]

I understand the concept of trying to prove that one can still do certain activities or live out dreams while still in the early stages of MS. I have been dealing with the concept of reinventing myself for so long and doing it in so many ways now since my first symptoms. That is well and good that these people can do this and maybe their life's journey will not turn into a progressive one.

It is just the linking of monies raised and sponsorship with Biogen that rubs me the wrong way. I guess my thinking is money raised by a non-profit should be used to help find a "cure" and not be linked with a drug sponsorship. Biogen is not in the business of looking for a cure as that would basically have an affect on their lucrative business. On the other hand they are looking for customers and the implications that they have the drugs to affect a cure is being pushed by this project. As stated the project's focus is "on changing the perception of MS" and they are doing it by using the able bodied people with MS. Why don't they have anyone who is in a wheelchair? The image would not be the same....would it?

I am in a dark place myself and totally understand the frustration that comes with living with these limitations on a daily basis....not being able to do the simplest tasks for myself.....and understand that suicide is more prevalent in PWMS.....but....on the other hand.....I have my doubts about this project.

Just dealing with a lot on my plate at the moment so I should probably not even burden myself with venting any more frustrations on this topic.

Blessings,
Gabriella

[agate]

Your points are good ones. I'm not sure why they don't have people in wheelchairs but it sounds as if that's the way it is:

Medical criteria:
1. Walking independently (max EDSS6), support allowed
2. Good function of at least one arm and hand
3. Good vision on at least one eye (better than 6/12)
4. Continent for both urine and faeces
5. Symptoms such as pain, spasticity, ataxia, depression or other are well treated
6. No severe cognitive dysfunction
7. No baclofen pump
8. No other disabling or chronic disease, which requires special medical attention and/or safety concerns related to sailing.
You must submit a medical certificate from a neurologist including an MS diagnosis and a short description
of mobility including EDSS specifying mobility details and a short statement concerning other illness and/or
complicating factors.

They've set the bar pretty high. And they make it clear that you have to have had some sailing experience:

Therefore, it is a precondition that you have been in contact with sailing and that you have done your utmost to acquire some experience and knowledge before coming onboard. As a
minimum, all participants must have sailed on a yacht or a boat.

They do make this statement:

The medical and maritime demands concerning safety limits the possibility for participation on the circumnavigation Oceans of Hope for those
who are most affected by MS. It is important to emphasize, however, that it is possible for this group to go sailing by attending the many sailing events aimed at disabled, which are offered by many yacht clubs.

[Howie]

One thing that restricts the use of wheelchairs on a ship that size, is moving on a rolling deck, to going below deck where meals are served, and where living quarters are located.

An Oceanliner can handle it, but not a ship that small. It would put folks in wheelchairs at risk.

[agate]

Howie, I'm glad you shared your nautical expertise.

This post by Cherie sounds as if wheelchairs are possible:

There are several PWMS who are wheelchair bound who sail quite successfully. last summer the MS Dream Center did 4 classes of 10 people each and this summer they have increased it to twice that.

She's probably talking about larger ships.

[Howie]

Or smaller ones with a loading/unloading device. I've only been on motor boats in lakes, very different than sailing on the ocean.

I meet all the criteria they established to be a part of the crew, but would have no interest in joining them. Getting in and out of the bathtub makes me uneasy.

The film The Perfect Storm is a true story, and shows how quickly the ocean can turn on you. All hands were experienced, but all were lost because of a storm at sea.

[stillstANNding]

Hey Ann, aren't you in Boston, the final destination.
You could meet the ship and take pictures? FUN!!

Sally, Biogen lives here in Cambridge (the other side of the Charles River). They don't need me to welcome them. Good thing, cause the whole thing stinks.
ANN

[SalpalSally]

Sally, Biogen lives here in Cambridge (the other side of the Charles River). They don't need me to welcome them. Good thing, cause the whole thing stinks.
ANN

AMEN!
"That was a prayer", as my DGM would say,
when she used the Lord's name in vain.