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Navig8tor

Oh fck change in plans wifey diagnosed with MS

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Well that happened suddenly........me late 50's wifey 61  thought it was a stroke but the diagnosis is MS.

NZ based now. The plan was to buy a boat and play before we were both too old too do so  and get another smaller place after selling the place we have worked hard on before this development..

Have not had my own boat for a long time, something that come's with running boats for people that have far too much money for their own good.

Ex wife and kid in the US complicates things. kid 22 is well looked after.

Need some good input,  wastrels need not apply. cannot sleep but trying too.

Not going back on the boats, used to run big boats based upon experience now the Younguns can barely carry a watch and don't get me started on collision rules at sea, have had young nippers believe that commercial vessels should give way to vessels under sail!

Me on the other hand are a firm believer in the tonnage rule -if he weighs more than you do stay out of the frigging way.

 

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Sorry to here that

In my version my wife has had a very difficult with rheumatoid arthritis and just about the time she got back to fairly healthy i got Diagnosed with CLL ( B-cell chronic lymphocytic leukemia )in 2017 and it was pretty sudden and sucks but is unlikely to be fatal but really limits my active life , just started a drug trial two months ago which has improved things a lot

So if the shit storm wasn't big enough yet a huge multi-national company acquired the company we work for and promptly started a fire as many people as we can plan, the assassin got my wife but has to be cautious with me due to age and job accommodation requirements

We had been planing for retirement anyway and the whole thing has worked out as it accelerated our relocation plans and we ended up with a house next door to her brother who is my best friend and down the street from here two other sisters in a much lower cost of living area and the deal should be done in the next few months 

I know you cant see it now as your going through hell but it all worked out

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Sorry to learn of this, are you asking  for suggestions for other than boating activities you can share ?  I too was thinking of a replacement for boating in retirement years acknowledging our limitations . I came across something called "Overlanding" which is similar to cruising off to beautiful remote places without many people . I have always loved looking out of an airplane window and wondering where all those dirt roads go . Wife however was not so keen but this what I would have liked to have done.

https://www.overlandexpo.com/

https://www.oregontrailer.net/home.html

 

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3 hours ago, Navig8tor said:

Well that happened suddenly........me late 50's wifey 61  thought it was a stroke but the diagnosis is MS.

NZ based now. The plan was to buy a boat and play before we were both too old too do so  and get another smaller place after selling the place we have worked hard on before this development..

Why change your plan?

MS doesn't take a lot of managing (assuming remitting / relapsing type), and it sounds like you are quite capable of managing a boat essentially single handed. My brother is just getting to the stage of needing a wheelchair after 10 years with MS - up until now he could have managed cruising OK. Just don't push energy levels, oh, and don't go to overly hot places as that tends to knock folks with MS around a heap.

Your plan before was to sail and play until it got too hard or not fun - you didn't have a set time on that. So it still works, whether for a month, a year or a decade. Might as well do what you want and can for as long as you can - it's a zero sum game for all of us in the long run.

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My sister has MS.  It came late in life.  That is much better.  She gets interferon shots every Friday.  It puts her down for the afternoon but the disease has not progressed.  I hope your wife can find an effective treatment.

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Unless the MS is very restricting now your plans may still work. Downsizing the home is a big help. If/when mobility become an issue a small home is less time consuming for cleaning and maintenance. Can you envision scaling back your cruising to shorter distances? Med or Carribean charters or purchase.  Power on European (Aus?) or US rivers and waterways?

A friend was diagnosed MS at 22. He rode his motorcycle to 38 or so. His wife got a 3 wheeler CanAm a few years ago for his last rides. Passed away at 63 last year. 

Good luck going forward. 

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So very sorry for your sad news but hope things can improve since the first step is diagnosis.

On the up side, I crewed a boat up to Cape Breton Island last summer so the owner could meet his wife, also in the early stages of MS, there and take her sailing on Bras D'or Lake. While it wasn't a fun run up and prolly less so coming back, she had a wonderful time. Hopefully you'll have many more years of great memories together.

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19 minutes ago, Willin' said:

So very sorry for your sad news but hope things can improve since the first step is diagnosis.

On the up side, I crewed a boat up to Cape Breton Island last summer so the owner could meet his wife, also in the early stages of MS, there and take her sailing on Bras D'or Lake. While it wasn't a fun run up and prolly less so coming back, she had a wonderful time. Hopefully you'll have many more years of great memories together.

Baddek and the surrounding area is one of the most beautiful places on the face of the earth....

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Thanks for the positive input everyone early days yet and a number of medical meets this week to get a clearer understanding of just what we are dealing with.

Would love to get up to the Bras D’or lakes too, we where scheduled to go on boat owned by a member of Cruising Club of America and I had done lots of research prior to the trip.

For reasons I cannot recall the plans got changed and so the Bras Dor region has remained an area I like to explore.

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A little plug for social medicine.

By the way, Social is not Communist OK.

4 days Hospital, 2 CAT scans 2 MRI and consult with a well regarded Neurologist  cost ZERO.

The only thing I would change was I delivered wife to Hospital at 2am should have got the ambulance cause they have the equipment on board to better deal with the unexpected had I used that option my expected contribution would have been NZD 98.00 or about USD 68.00.

Who is winning?

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5 hours ago, Navig8tor said:

A little plug for social medicine.

By the way, Social is not Communist OK.

4 days Hospital, 2 CAT scans 2 MRI and consult with a well regarded Neurologist  cost ZERO.

The only thing I would change was I delivered wife to Hospital at 2am should have got the ambulance cause they have the equipment on board to better deal with the unexpected had I used that option my expected contribution would have been NZD 98.00 or about USD 68.00.

Who is winning?

Yes, some of us are aware of the issue and working to address it. You don't have to rub it in.

EDIT: Snark aside, you have my sympathies on your wife's diagnosis. 

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Mom has MS.   Diagnosed around age 55, she's now 74.  Essentially bedridden since 70, the previous decade wasn't pretty either.

The brief version of my advice to you is to ABSOLUTELY get on your horse and have whatever adventures you can, starting right fucking now.

While you're doing that, however, keep a sharp and realistic eye out for signs of progression, and then respond to those immediately.  This might mean cutting an adventure short, it might mean scaling way back on future plans, but it must be done.

Speaking of plans... come up with a plan for long-term care, and be very clear about what threshold gets crossed in order to enact that plan.  "we'll know when it's time" is absolute bullshit.

 

My parents spent ENORMOUS energy (and resource$) in trying to deny reality and/or forestall the inevitable instead of accepting and adapting their situation.  None of us thought this was a good idea at the time, but in the moment we bit our tongues and let them live their lives their way.  In retrospect, this was completely counterproductive enablement which we all deeply regret.

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My SIL is the head of neurology at the Mayo Clinic, one of those Prodigy types, had her first paper on MS published by Mayo when she was 17.  She's been researching it her whole career.  About 10 years ago she made a breakthrough in knowledge of the disease.

I'm not in the science field and will use the wrong words, but it is the gist of what she uncovered.  She found it is a combination of 3 to 5 different diseases (disease is the wrong word, but close) in each patient. It is a different combination in every patient.  It was a challenge when she presented her material, as the medical field didn't at first believe it.  They had to replicate her tests and prove it to themselves, which they did, before accepting that she was onto a greater understanding of the disease.

I talked to her at Christmas, the focus she is studying currently is that there is a protective coating around the nerves that degenerates in MS patients.  She is trying to figure out what causes this to occur.  Finding the key to this door would be significant to all MS patients.

I once asked her, "Is this the type of thing that some day will have a cure, or will it always be a treatment?"  She said, "Definitely a treatment."

I am amazed by her incredible intelligence and have applied it so consistently through the years.

 

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7 hours ago, Figment said:

Mom has MS.   Diagnosed around age 55, she's now 74.  Essentially bedridden since 70, the previous decade wasn't pretty either.

The brief version of my advice to you is to ABSOLUTELY get on your horse and have whatever adventures you can, starting right fucking now.

While you're doing that, however, keep a sharp and realistic eye out for signs of progression, and then respond to those immediately.  This might mean cutting an adventure short, it might mean scaling way back on future plans, but it must be done.

Speaking of plans... come up with a plan for long-term care, and be very clear about what threshold gets crossed in order to enact that plan.  "we'll know when it's time" is absolute bullshit.

 

My parents spent ENORMOUS energy (and resource$) in trying to deny reality and/or forestall the inevitable instead of accepting and adapting their situation.  None of us thought this was a good idea at the time, but in the moment we bit our tongues and let them live their lives their way.  In retrospect, this was completely counterproductive enablement which we all deeply regret.

Yup. Someone with MS can live another few decades after diagnosis, nearly as long as someone without MS if they're older. Gotta get out and have fun while you still can, with or without MS.

Also, MS is a disease where the axons supposedly lose their myelin sheath, and the electrical currents have a hard time jumping from one cell to the next without that dopant in the myelin sheath.  So you eat dopants to keep the myelin healthy; foods with calcium, magnesium, and selenium. Seaweed, raw fish like sushi where the magnesium doesn't bond to the oxygen, or ionic magnesium supplements like Natural Calm. Going out to sea in a new boat with your wifey might even add years or a decade to her life if you eat a shit-ton of fish.

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4 hours ago, Glenn McCarthy said:

My SIL is the head of neurology at the Mayo Clinic, one of those Prodigy types, had her first paper on MS published by Mayo when she was 17.  She's been researching it her whole career.  About 10 years ago she made a breakthrough in knowledge of the disease.

I'm not in the science field and will use the wrong words, but it is the gist of what she uncovered.  She found it is a combination of 3 to 5 different diseases (disease is the wrong word, but close) in each patient. It is a different combination in every patient.  It was a challenge when she presented her material, as the medical field didn't at first believe it.  They had to replicate her tests and prove it to themselves, which they did, before accepting that she was onto a greater understanding of the disease.

I talked to her at Christmas, the focus she is studying currently is that there is a protective coating around the nerves that degenerates in MS patients.  She is trying to figure out what causes this to occur.  Finding the key to this door would be significant to all MS patients.

I once asked her, "Is this the type of thing that some day will have a cure, or will it always be a treatment?"  She said, "Definitely a treatment."

I am amazed by her incredible intelligence and have applied it so consistently through the years.

 

They know what happens for the most part, the myelin sheath around the axons loses the dopants. In its natural state, myelin is a semiconductor, as it degrades, its ability to carry charge also degrades. The cells don't actually touch, there is a small gap between each cell, and the myelin presents a favorable conduction path so that the current has sufficient potential to jump the gap from cell to cell. When the myelin degrades, the conduction path across the cells becomes too large. One of the most promising treatments is a reverse of the chemical restraints like Aloperidin. They'll figure it out in the next ten or twenty years. Mayo and the others are supposedly getting close already ...

https://www.ncbi.nlm.nih.gov/pubmed/3537648

 

Navig8tor ... dude, it's unfortunate, but maybe look at this MS as a blessing rather than a curse? You clearly love your woman, and now you two have Big Ben over your head, ticking and telling you both that it's time to live your life. Decades ago you probably wouldn't have had that diagnosis, now you know that you have at least twenty good years or maybe more. That's a lot if you use it, but it goes by in the blink of an eye if you don't.

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Another thing the Neuro mentioned is Sunlight, apparently recent research has found exposure to sunlight and the bodies cellular reaction to such is beneficial to MS sufferers.

He mentioned that this did not mean go and buy Vitamin D pills rather its the bodies chemical and cellular reaction that is more important.

Don't yet know the hows and whys, most appreciative of everyone's input thus far, have being avoiding the gloom and doom of Dr Google and it is most helpful to to have the info presented.

Lots of research to do and prep questions for the pros we meet this week.

Thanks everyone. 

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10 minutes ago, Navig8tor said:

Another thing the Neuro mentioned is Sunlight, apparently recent research has found exposure to sunlight and the bodies cellular reaction to such is beneficial to MS sufferers.

He mentioned that this did not mean go and buy Vitamin D pills rather its the bodies chemical and cellular reaction that is more important.

Don't yet know the hows and whys, most appreciative of everyone's input thus far, have being avoiding the gloom and doom of Dr Google and it is most helpful to to have the info presented.

Lots of research to do and prep questions for the pros we meet this week.

Thanks everyone. 

Again, a friend diagnosed early 20s passed away at 63, 40 years later......

Best luck going forward....

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You're not going to believe this but from my point of view MS is good news compared to a stroke.  When I was diagnosed with MS 8 years ago, I went to the GP thinking I had a brain tumor.

There are lots of things to consider.

Sunlight. Vit. D is everything and you can't get enough from sunlight alone (unless you live on a boat in the tropics and sunbake every day.  I take 50 000 units a week. That would be 50 tablets if I bought them in aus so I import from the US where I can get it in one tablet.

Diet --> you need to eliminate 2 things from your diet (and hers).  Dairy and saturated fats.

There are proteins in Dairy that are very very very similiar to the ones in your nervous system.  If you have a "leaky gut" and these proteins get into your immune system it will quickly deal with them.  The problem is once done it goes looking for other things to "clean up".

Saturated fat (and trans-fat etc).  The lining on your neurons are made up of the fats in your diet.  In order to keep everything flexible and less prone to damage you want really those linings to be made up of non-saturated fats.  So all meat (except fish) and all fried food, margarine etc needs to be taken out of your diet an re-placed with good fats, Fish oil etc).

Treatment.  Hopefully you have full access to NZ semi-socialist health care scheme.  I take Tysabri, but talk to your wife's Neuro about Ocrevus.  Once it is in your system its a 6 monthly treatment.  Not usually a first stop treatment as it is quite powerful but it would be a great option if you want to go extended cruising.  Otherwise there are good oral treatments now.  Although they didn't work for me.

Really good independant info here: https://overcomingms.org/

I'll send you a PM with my phone number.  More than happy to talk MS and how it may or may not effect your life. 

 

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Life sends us unexpected challenges. First.....you are so lucky to still have her in your life whatever changes it might bring. Second, you may have to reimagine some of your goals but there is still so much the two of you can do together that your vistas are endless. I don't know how old you are....but there was a moment when I realized........."holy shit!! I'm not going to get it all done". Then I realized........"holy shit..........I did a lot of stuff". Then shortly thereafter......"well.......there are still a lot of ways to do interesting and fulfilling things".

Enjoy your journey together...............

Bruce (a Canadian treasure)....summarized it well.........pay particular attention to the last verse...........

 

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