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Old 02-10-2014, 10:38   #16
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Re: Intro and Difficult Question

You may wish to consider what kind of boat you wish to sail. A catamaran might provide a more stable and flat platform which you might find easier to get around on. If dizziness becomes a symptom, it becomes a no-brainer. Handholds and railings can be added to any boat. Shop around for a style that will provide the flattest floor. Sleeping in the cabin usually just entails putting the table down. It is even possible to modify to install a porta-potty 'upstairs' if you have to avoid getting up and down into the hulls (although how much harder can it be that getting from the cabin into the cockpit of what you already have).

You might also want to shop around for an ambulance service that will fly you back to your regular doctors when you need it. Some might be pricey but what is cost next to your health?

Coastal sailing beats sitting at home wondering what will happen next any day. Do not give up until you are dragged kicking and screaming into giving up anything!

Enjoy the day, even when it it hard (added tag line when I was diagnosed with Carcinoid cancer)

Philip
(I am starting to build another catamaran (my prejudice might be showing in this post) and I have $6000 of marine ply in the garage to get started. This one is 44' x 24')
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Old 02-10-2014, 10:38   #17
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Re: Intro and Difficult Question

Yeah... go sail.

Perhaps makes some safety modifications and rethink your roles and responsibilities.

Off the top of my head:
Adding extra hand rails to the companionway and head.
Perhaps sacrifice your traditional cockpit so add a recline-able (lounge) seat.
Installing cabin and cockpit alarms so if she needs assistance she can press a button in the v-berth / head and you will be alerted in the cockpit (and vice-versa).
If she is going to cook, consider fabricating a flip out post she can lean against.
What do you use for a dingy (might think about a faster option in the event you need to get to shore 'fast'

AND

Re-think how you will split watch (do you want a gps / compass in the berth so you can determine if you are 'suddenly' off course).
Plan your evacuation procedures; under what circumstance will you abandon ship and how can you get her into the life raft (maybe a bosun chair and block set up to help her in and out of the cabin / overboard


These are all very solvable problems and I cant think of a single reason I would not go sailing per your original plan.

enjoy.

-steve
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Old 02-10-2014, 10:46   #18
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Re: Intro and Difficult Question

OH YEAH!!!!!!

You MUST (this is NOT an option) undertake advanced first-aid training and have a VERY VERY VERY comprehensive first-aid kit on board that can either be taken to the life raft or a 2nd one there. (if you spend less than a few hundred dollars on this you dont have the correct kit).

You should know how to set a broken bone, apply compression bandages to bruised / broken ribs, stop significant bleeding and diagnose many health related symptoms.

While we all should have these skills, I am imploring you to PLEASE think about this as she is more prone to risk of accidents resulting from a spell while underway.

-steve
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Old 02-10-2014, 11:01   #19
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Re: Intro and Difficult Question

Wonderful suggestions, Steve. We will add these things to our to-do list as well.

For me personally I know my habits will change a bit when it comes to wearing a life jacket and tethering. We rarely sail at night and are never on watch alone so I have never gotten into the habit of doing either, but I will now.
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Old 02-10-2014, 13:51   #20
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Re: Intro and Difficult Question

In the same way as Becky (above) is taking responsibility for her well being by wearing PFD and harness, I think the OP should help his good lady with her taking responsibility for her well being aboard. As she becomes more used to living with the label and what her body is actually doing, she will know better how to keep herself safe.

Ann
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Old 02-10-2014, 14:10   #21
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Re: Intro and Difficult Question

Please do not give up your dreams and desires. I was faced with a similar diagnosis 2 1/2 years ago- it turned out to be a brain tumor and not MS but with many of the same symptoms only they don't go away. As a result it has driven me TO follow my dreams. I've had to learn to walk without much feeling in my feet other than pain, no feeling in my hands- yep that causes problems in the kitchen. The worst is the memory loss. I can spend 5 minutes trying to remember a word and never even come up with a way to explain to my husband what I'm trying to say- he's gotten quite good and my games of "charade". With chemo the tumor has "died" and didn't require surgery but I will probably get another. I know longer go for MRI or CT scans- what will happen will happen. I won't under go chemo again -( I was so ripped off- didn't even lose weight!)
Point is- don't let this change your life- follow your dreams, do what you can, modify your cruising, what ever it takes but never, ever give up.
I learned alot about nutrition- I have tried to change my eating habits (I must quit smoking!) Look into Gerson Therapy- all natural therapy that does wonders-
I wish you the best and will keep you in my thoughts and prayers.
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Old 02-10-2014, 14:15   #22
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Re: Intro and Difficult Question

Quote:
Originally Posted by biker6977 View Post
Please do not give up your dreams and desires. I was faced with a similar diagnosis 2 1/2 years ago- it turned out to be a brain tumor and not MS but with many of the same symptoms only they don't go away. As a result it has driven me TO follow my dreams. I've had to learn to walk without much feeling in my feet other than pain, no feeling in my hands- yep that causes problems in the kitchen. The worst is the memory loss. I can spend 5 minutes trying to remember a word and never even come up with a way to explain to my husband what I'm trying to say- he's gotten quite good and my games of "charade". With chemo the tumor has "died" and didn't require surgery but I will probably get another. I know longer go for MRI or CT scans- what will happen will happen. I won't under go chemo again -( I was so ripped off- didn't even lose weight!)
Point is- don't let this change your life- follow your dreams, do what you can, modify your cruising, what ever it takes but never, ever give up.
I learned alot about nutrition- I have tried to change my eating habits (I must quit smoking!) Look into Gerson Therapy- all natural therapy that does wonders-
I wish you the best and will keep you in my thoughts and prayers.
I found this post so inspiring that it brought tears to my eyes. I wish I could just give you a big hug and tell you how very wonderful I think you are. Life sent you a bully and you are kicking sand in his face. Keep fighting, keep sailing, keep living...and never give up.

Love your attitude, and praying you don't ever hear from that bully again!!!
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Old 02-10-2014, 15:05   #23
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Re: Intro and Difficult Question

I just thought I would add my experience as a rehab counselor for spinal cord involved
Clients , which MS falls in this realm.
First Join the MS society. They have a tremendous wealth of information
Secondly MS varies greatly with the individual as far as progression .
Thirdly, and you don't really want to hear this ,hot weather makes the condition worse
Cold Weather and cold water seem to help with mobility and range of motion.

In the early stages --carry on with normal activities
Just remember each case is different
Most questions can be answered by MS society
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Old 02-10-2014, 15:12   #24
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Re: Intro and Difficult Question

Also I am in the Ft Myers area but plan to sail on the west coast of Fl and keys.
Let me know when you are in this area and we can sail in a floatila around the ocean.
PS
I have a 40' cat
Michael
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Old 02-10-2014, 15:57   #25
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Re: Intro and Difficult Question

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Originally Posted by rancher44 View Post
Thirdly, and you don't really want to hear this ,hot weather makes the condition worse
Cold Weather and cold water seem to help with mobility and range of motion.
Predicated on the assumption that this is correct, I am adding:

1. Install AC onto your boat
2. go sail and love every minute you share exploring the oceans

-steve
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Old 03-10-2014, 07:23   #26
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Re: Intro and Difficult Question

Thankfully, she prefers warm weather and it does not seem to cause a problem. My biggest concern is when she is having a big event, balance and cognitive ability drop off very quickly. The catamaran idea is a good one we may explore.

After the news, we took yesterday and today off and are at the boat just letting all this sink in.

Thanks more than you know to all of you. With prayers and luck we hope to get to meet many of you in the near future.


Sent from my iPhone using Cruisers Sailing Forum
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Old 03-10-2014, 07:40   #27
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Re: Intro and Difficult Question

Go for a nice sail on a Cat if possible first, maybe with a few waves, everybody keeps talking about the stability of a Cat, and they are more stable, but to me the movement is less predictable, less movement, just quicker, and shorter amplitude than a mono.
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Old 03-10-2014, 07:58   #28
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Re: Intro and Difficult Question

This thread is a difficult, and at the same time inspiring, read. My father, who brought me up sailing, was diagnosed with early onset Parkinson's. That was the motivator that kicked him into moving up all his plans for "one day". He had the luxury of a crew of four (even if two us were teenagers at the outset), so there were extra hands when he was less capable. There are similarities with relapsing/remitting, some days were good, some his tremor and rigor were so significant that he had a hard time. I suspect the periods were much shorter for us than for MS. When the doctors would have had him at home he managed two circumnavigations.

Best of luck with your decisions, and keep dancing with the dolphins.
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Old 03-10-2014, 08:01   #29
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Re: Intro and Difficult Question

Trying a cat is a great idea.
I have a 40' 2010 Leopard you are more than welcome to come aboard and
go for a sail . Boat is in Port Charolette Fl
Heading down to the boat the 13 th of Oct . The gen set and air should be installed by that time
Just send me a PM and we could talk if unterested
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Old 03-10-2014, 08:29   #30
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Re: Intro and Difficult Question

My take: go now.

Keep you landside options as open as you can in case you want or have to come back to land life one day.

All the best!
b.
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