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Thread: Taking a proper holiday

  1. #1

    Taking a proper holiday

    So the mnd diagnosis is given, but obviously not without the different stages of the disease and consequently the different restrictions that they give. I am ambulant but struggling with shoulder strength and hands. But also a reduced breathing capability, which restricts physical activity. I want to go on a cruise with the family before I'm really struggling. Has any other mnd sufferers done similar and was it worth the anxiety?

  2. #2
    Forum Member Pinkelle's Avatar
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    Hi. When I had my diagnosis last year my mum booked and treated my husband and I a cruise to the Norwegian fiords. Herself and my step father will also be coming. It has given me something to look forward to. We go on August of this year. Holiday companies are much more geared up to disabilities now. I will have assistance getting on the ship apparently as I'm taking my mobility scooter with me. Go and book one and discuss your needs with the company. We deserve it x

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    Caravanman21. Yes been on lots of cruises. I was formally diagnosed ALS MND in May 2014. I retired two weeks before at 65. Luckily just my left side and speech. I took the family my sons wives and grandkids on a cruise. I was able to walk with frame then in August 2014. I have got bit worse mobility wise. I have a good electric Salsa M2 wheelchair which lifts you up and reclines back. Last cruise a year ago booked good disabled room and had bed provided by Mobility at Sea. All cruises been from Southampton and back. I have always picked cruise that stop at Gibraltar as my sister lives there and the booze really duty free and fags for friends.
    Cruises are quite safe for MND disability as at ports of call there are disabled buses to take you into the towns.
    Best wishes John

  4. #4
    Forum Member Barry52's Avatar
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    Hi Caravanman,

    Stop clogging up the roads (lol only joking) and book that cruise. I was concerned when we started cruising after diagnosis but it is the best way to see the world. I have now given up the long haul flights and book cruises from the UK or near Europe departures. I have in the past taken my rollator but this June I will take my scooter as I am less able. The cruise lines are very amenable to disability and you can request needs such as wet rooms and special beds.

    Don't put off pleasures in life, just adapt them to your capabilities. Roll on June when I shall be cruising the Adriatic and the Mediterranean.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  5. #5
    Absolutely love your replies and the positivity you all possess. My breathing is my main concern, because it unfortunately would appear to be the area being affected by mnd. Which is a bit of a worry, although still breathing unaided. Thanks for the replies guys��

  6. #6
    Forum Member WendyWooG's Avatar
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    Caravanman
    Have you had a full respiratory exam, discuss the holiday with your doctor and your worries. If you do need some breathing support it may only be at night and you may be able to take your Nippy with you.
    I have just started using one, I only use it at night and it gives me much more energy during the day. It comes in it's own carry bag so if you need it you would be able to pop back to your cabin for it.

    There are solutions for everything, it's just a matter of planning ahead.

    Wendy

  7. #7
    Forum Member Ellie's Avatar
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    Hi Caravanman,

    I think you've had respiratory (lung/breathing) tests recently - can you remember any numbers, even if they made little sense to you?
    As Wendy asked already, are you using a Nippy (BiPAP, breathing machine) at night and/or during the day?

    You're definitely not going to like what I next say, but.... to ease your breathing, consider using a wheelchair or mobility scooter for part of the day, rather than using so much energy to walk and breathe.
    I know it's a huge step, but it might improve your Quality of Life. Also, anxiety is bad for our breathing!

    Flying might be an issue but your Doctor can advise on this. Even if that's the case, there are plenty of cruises for which no flights are required.
    Cruising with the family is a great idea and plenty of people on this forum have been on wonderful cruises.

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  8. #8
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    Caravanman:
    I want to fully endorse Ellie's comment re a scooter. I persisted with a stick then fell and broke my arm. that's when I transitioned to a scooter. You can still use a rollator or stick to exercise your legs but doing so under safe conditions. Ships are hotels with long corridors and spaces. preferred mode of transport is a scooter. I transition from that to seats and dining room chairs. In hotels, restaurants etc. Also you can have a few drinks because no risk of falling. I have not been breathalysed yet. Over the limit on many an occasion.

    Best

    Charles

  9. #9
    Forum Member Pinkelle's Avatar
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    Query for you cruise experts. As my mother has kindly booked this cruise for us I'm not sure she would have realised there are disabled cabins. I'm going to see her today and will check with her. Do you think it would be a problem to change the cabin at this point. We don't go until August but I expect they will be pretty booked up by now!

  10. #10
    Forum Member Barry52's Avatar
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    Hi Pinkelle,

    Most cruise ships have only a few disabled friendly cabins on each deck and they book out quickly. Your best option is to ring the agent and ask them to enquire for you. If you don't need a wet room then your cabin may be suitable. Find out the name of the ship and google it. You should see detailed deck plans and cabin layout. I find it best to familiarise myself with the layout before boarding.

    Enjoy.

    Barry
    Life is a journey, not a destination.

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