Cruising for Disabled Boaters

[JILLBROWN]

I'm not sure is this is the correct thread for this, but here goes: I have Peripheral Neuropathy, which affects my balance and sense of where my hands and feet are in space. I'm not comfortable walking around the boat and getting on and off safely, to say nothing of handling lines. I'm very concerned about boating this summer. My dear husband isn't aware of the seriousness of my concerns. How can I manage to get around and still be safe? We have an Island Gypsy 34, which I love and I don't want to spoil our cruising plans. Anyone have any suggestions?

Thanks,
Jill
Whidbey Island WA

 

[BruceK]

Seeking advice is good, don`t worry about thread location. I had peripheral neuropathy in the lower legs briefly, due to a rare antibiotic reaction. I was quickly at the neurologists,(no ankle or knee jerks)narrowly escaping hospitalization in case it was the start of Gillian Barre. A disturbing but brief experience. I`d say your concerns are well founded, if you lack confidence onboard you are probably right to do so.There is someone qualified on TF I hope contributes.
I`m guessing you don`t want to undermine the enjoyment you and your husband derive from boating together.You`ve chosen to stay quiet but I doubt it`s wise not to tell him. I`d say see your treating doctors asap for assessment, possible coping strategies, treatment, etc,and advice to to whether boating is still safe and tenable for you if as I suspect (you joined in 2013) your condition is progressing. You don`t want a nasty accident your husband`s first knowledge things have progressed. The sooner you confront the current situation the better, and I suggest not going boating until you have.

 

[Judy at JWY]

Jill, I fully support all said by Bruce K. I have a bit of a medical background, as well as I have an adult daughter with special needs, so I am aware of the extra concerns and necessary precautions.

A few boat questions: do you have grab rails appropriately placed? Does your IG have stabilizers? Are your cruising grounds appropriate for maximizing calm waters? Do you have appropriate medical supplies onboard (splints, bandages, sutures, etc.)?

I have a Cape Horn owner (husband is a commercial fisherman; wife is an emergency physician) who has a company that addresses the medical needs of commercial fishermen in the PNW. I can see if her company takes on recreational boaters as clients if you would like.

 

[Sharpseadog]

I'm not sure is this is the correct thread for this, but here goes: I have Peripheral Neuropathy, which affects my balance and sense of where my hands and feet are in space. I'm not comfortable walking around the boat and getting on and off safely, to say nothing of handling lines. I'm very concerned about boating this summer. My dear husband isn't aware of the seriousness of my concerns. How can I manage to get around and still be safe? We have an Island Gypsy 34, which I love and I don't want to spoil our cruising plans. Anyone have any suggestions?

Thanks,
Jill
Whidbey Island WA

I have peripheral neuropathy in my legs and feet and it does impact my boating. However if you can always have one hand for yourself (ie. something to hang onto) you might find being on the boat easier than being ashore with nothing for support. I do. ️️🛳

 

[Pcpete]

I’m about the same as Sharpseadog, and use the same methods for getting around. The Admiral and I always wear our PFD’s and we always have friends or family go with us, and going is something we do a lot of. It just takes planning and understanding.

 

[huruta]

Agree that making sure husband is in the loop is key. I have a hearing impairment that affects balance. Chose power over sailing for this reason. Let husband do outdoor activities. I drive, he handles fenders, catching buoys, windlass….things that require more balance. Perhaps develop new skills that serve your health status? Good luck!

 

[SteveK]

Jill,
who drives the boat. If you do not, offer to do so. sounds like this is not the first year of boating, how were the duties shared before, what needs to change.
Over many years of boating I can single hand most boats but welcome the assist from my admiral. This new to me boat was the first one where we can lose sight of each other so we now have what they call marriage savers, two way hands free headsets.
You have the desire, it will work out.

 

[Pcpete]

Maneuvering is always high stress relative to everything else except an emergency. That needs to be understood by all aboard. The easiest and imo the most effective way of communicating is with wireless headsets. The motorcycle community has been a huge help in making the right headsets available. There’s no shouting through windows, doorways or over engines and when the person taking directions has an issue options can be discussed immediately. “Back down, I missed the cleat” comes to mind, or “the stern needs to come over 6” to port to clear the end of the dock”.
The only downsides are they have to be recharged to ensure they will work and deckhands shouting instructions to dock hands…..or starting an arrival conversation with the headsets on…..don’t ask me how I know.

 

[PierreR]

I might be able to offer some perspective. My wife has Ehlers Danlos and has had over 60 hours of orthopedic surgeries in the last 45 years. She has very little Proprioception or Exteroception and the condition is permanent. She has no natural balance and everything resembling balance is learned movements. There is no transferability of learned movements. In other words. If she sprains a foot she cannot just walk with crutches because she has not previously learned to walk with crutches and walking in general is not transferable.
I feel for you because your condition is impossible for someone with the ability to understand the situation. I have been married to my wife for 47 years and do not understand and have no ability to imagine what she can do and cannot.
I have learned to listen to her and not try to get her to somehow learn and adjust. I just look at the situation and determine what can happen and what won't happen, adjust and built things to make it happen.
I installed Marquip boarding stairs that stay level and ride with the dock. That eliminates the boarding problems associated with spatial problems. I have not step on the boat over 8" high and double hand rails for all stairs. The heads have extra hand rails and high toilets. The boat has 18" side decks and high life hand rails around the entire boat. Dinghy and water taxi rides are pretty much out. Yes, our boat is equipped with working pneumatic stabilizers.
Keep in mind that you may not understand having proprioception and become a terrible back seat driver to your husband who does have that ability. Yes, you know all of his faults and you may not be comfortable in docking situations where you do not know how close the boat is to other expensive objects but it does not mean he is going to screw up royally.

 

[JILLBROWN]

I'm so grateful to all of you for your support. Thank you for sharing your challenges and suggestions on how to keep boating fun no matter what! I've had PN for ten years, but it wasn't a problem on the boat until last summer. My condition has gotten worse since last year, and I'm more aware than ever that some lifestyle changes have to be made. My husband is doing whatever he can to make my boating experience safe and enjoyable. We have grab handles on the boat and we plan to attach more before the next cruise. I can walk on and off the boat and pick up bumpers, but jumping off onto the dock to handle lines is beyond me. Bill wants to help me as much as he can and I'm gradually getting used to what I can and can't do. I know that our friends don't understand my physical limitations - you have WHAT? What's that? But we all live our lives the best we can. Again, thank for the understanding and support.

 

[Portage_Bay]

How about switching roles? You drive. He handles lines and fenders. The controls may need to be modified or moved so you don't have to move around when handling the boat. With marriage savers he could talk you through things as you develop your skills. Just an idea. I really have no idea if it would work with your limitations.

 

[jhall767]

I can tell you that your husband just wants you to be there with him and whether you can hop off the boat and get lines doesn't really matter to him. Figure out how to make the boat so he can truly operate it single handedly. Even if it means a different boat. Maybe floating piers only, Don't get hung up on cost.

The last thing you want to do is become averse to boating because of your or his fear of not being able to handle the boat.

 

[Andy&Indie]

New member popping my two cents in. I have a good friend with MS who is boating with her husband. They have been able to make it work. I think I agree with the others, using a PFD when on the boat (I have seen a super light and small one called the Micro by TeamO). You could also take a method from sailors and set up a jackline and tether so that you have more stability. Wearing the Marriage Savers or bluetooth headsets as suggested above (2Talk Intercom communication BLUETOOTH HEADSETS for boaters ) has been a game changer for our boat. Even if the captain is above and I am below deck we can talk easily and I know where he is and what is happening. I have a GF who tripped and fell backwards off the boat and her hubby up front did not notice her go overboard with the noise of the engines and wind he probably would not have heard her but they were wearing headsets, and he heard her clearly fall, stumble (swear - lol) and splash. On our boat we have also set up extra hand rails and I had my son create a few extra knotted rope lines for me around the boat too. Ropes off the back for swimming and areas for stairs and beds. Anyway, would love to hear how your summer is going and what thing you were able to do to help your journey. I think there are a lot of us that might need help or have friends who do too.

 

[JILLBROWN]

Your suggestions have all been helpful. I actually went down to the boat and showed my husband where I have the most trouble walking around the on the deck. He loves to solve problems so he's installing 5' long wooden hand rails on both sides of the cabin top (only 3' off the deck) so I can grab them when I walk around the bow. He's also installing vertical metal hand holds when they're most comfortable for me. I'm practicing stepping on and off the boat. We're planning a cruise down Hood Canal with friends in a few weeks and I'm starting to feel more confident, thanks to your stories and suggestions.