Sailing and ALS?

[bartantero]

Hi everybody, My name is Andrea, form Italy (Rome)

I hope you can help me, with your advices.

My friend David, who has an advanced ASL diagnoses.

Since we both are leisure-sailor David wishes to sail once again, and I wish to sail with him.

I understand this is quite a fool program, but still I hope we ca do that.

My boat is wide enough to let David and his chair came on board quite easily; the boat will be fitted with a platform where to fix steady the chair.

I understand that the real task will be to have David strongly and controllably sited on his chair.

Does anybody tried it before? Do you think it's a fool thing?

Both me and David understand this is risky. But on one side sailing (and living in itself) is risky, an the other side can be risky but non foolish, and I have a doubt it could be foolish.

Thanks for help.

Andrea

 

[tammyg]

Re: Sailing ans ASL?

GO FOR IT You are a wonderful friend. Everything will be fine. I would also take third person though to help though if you think you need it. Please take pictures so we all can enjoy the ride. WOW, this is so special and you are fulfilling a dream to be a wonderful memory forever. You get 5 smiley's Because "YOU ROCK"

 

[bartantero]

Re: Sailing ans ASL?

The sailing trip is planned on spring, due to weather conditions and David's cronical lungs' problem.
So we have a few time to plan it.
We will have a "general trial" before going, using a big platform for David and his chair, on a big truck tyre inner tube, to simulate the sea rolling, and see if it affects the breathing machine and disturb David himself.
The crew will be quite big, including a friend of mine, a carpenter, who is helping me in preparing the boat, David's nurse, David's Anesthetist, who is a sailing fan as well, another David's friend, who is a skilled skipper, and of course David's wife.
The boat will be quite crowded. But it's a 50 feet, so room enough for everybody.

This is roughly the plan...

Of course I'll take picture and, with David's agreement, I'll post it here

But still I'm scared of doing something wrong.

 

[CAHPAH]

Re: Sailing ans ASL?

I live in the very middle of the USA, far away from any ocean, but I will say this; your PALS is lucky to have such a good friend. Not only will he enjoy the trip but just looking forward to it will, no doubt, bring him much happiness.

 

[Okie2]

Re: Sailing ans ASL?

This is what great people do for great people! You and everyone involved in making this happen are wonderful caring people. By all means if you can make this work it will be a good memory that will everyone will share. Good luck!

 

[ScarlettK]

Re: Sailing ans ASL?

Ahhhhhhhhhhhh this brings tears to my eyes and grips my heart because of the effort of such a love that you have for your friend David. I say life is meant to be only about relationships with one another through the love that God gave to us. His love is transformed into you, Andrea. Do this for David and for all of the PALS here who cannot do this for themselves. Yes, send pictures of the joyous day!

God bless you, Andrea...and God bless the efforts of all of your companions and David and his family!

 

[Ms. Pie]

Re: Sailing ans ASL?

It's a wonderful plan! You are a good and loving friend!

 

[penny1]

Re: Sailing ans ASL?

Go for it. I installed a swimming pool lift in our bass boat that picked him out of him chair while we were on land and put him in his fishing seat in the boat. Only thing I can add is, if he has trunk and neck weakness make sure his firmly straped at the trunk and neck braced to prevent a sideways whiplash effect if the boat rocks sideways. He should have a life jacket, but someone will need to unhook all seat belts or the chair will take him down like a stone. If possible he should be able to get out of the sun if necessary. If it is going to be warm, you can prevent a sweating prickly heat rash on his back using a sheepskin. make list of all meds, equip., creature comfort items and emergency plan, with the planning ahead you are doing you shouldn't have any problems. Good luck, and have fun. Penny

 

[vzandt]

Re: Sailing ans ASL?

No Andrea....you are doing everything right

 

[HelenL]

Re: Sailing ans ASL?

It will be a great day for you and your friend... some great advice already, and I think getting him into the boat may be easier than getting him out. Practice with a lift with someone in the chair sometime before you go.

 

[bartantero]

Re: Sailing ans ASL?

Thanks everybody for support!
I feel much better now and strong in going through this

Thank you penny for sharing your experience with me.
I have some question:
- did you your husband use a breathing machine on board?
- was the machine affected by the boat rocking, or was your husband somehow annoyed?

I love you all, it's so nice to share it with you!

 

[Al]

Re: Sailing ans ASL?

When I went sailing 2 summers ago we used the mast hoist to lift me out of my chair and my Hoyer lift sling over the boat and lowered me onto the bench in the cockpit. Propped up by pollows we had a wonderful day. My little speech at the end of the day is at Home I'm not bulbar but had drank some wine. Where there's a will, there's a way.


AL

On left side of page at ALS Site click videos and then a day with AL..

 

[bartantero]

Re: Sailing ans ASL?

When I went sailing 2 summers ago we used the mast hoist to lift me out of my chair and my Hoyer lift sling over the boat and lowered me onto the bench in the cockpit. Propped up by pollows we had a wonderful day. My little speech at the end of the day is at Home I'm not bulbar but had drank some wine. Where there's a will, there's a way.


AL

On left side of page at ALS Site click videos and then a day with AL..

This was just great to see! Thank you AL.

Unfortunately David is much fuhrer with his troubles.

By now he has tracheotomy, and basically the only muscle he can control is eyes'.

Where there's a will, there's a way. I really agree with you

 

[tammyg]

Now I am excited about this trip too. Make it happen

 

[bartantero]

By the way, this is the boat, Maris Stella III

The picture (sorry for the low quality) was taken last December, during the race close to Xmas. No wind, but fun