Last reply 1 year ago
American trip

I’m 43 and have rrms. My main problems are foot drop, balance problems and problems walking. And of course- our good friend fatigue! Anyhow- in our wisdom, my husband and 2 boys- 11 and 14 have decided to go on a one off holiday to the US of A. Staring in New York then taking a road trip to visit relations in Canada. I’m worried about NYC. I’m dying to go- I visited in my 20s and loved it but I’m worried about how my MS will affect my trip and my family too. Any tips from anyone? 🙂🙂

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1 year ago

@condansmum , preparation is key to a successful trip. The more that you can plan ahead, the more you can add in little breaks here and there, so you can have a brief stretch of the legs and a sit down.

Do you have a wheelchair? This would be a handy piece of equipment to take with you. It would avoid you getting left behind or slowing everyone down. It also makes the journey through airports a lot easier. Let the airline know that you need disabled assistance and they’ll have staff on hand to prioritise your route through all the formalities.

If you feel fine one day, you don’t need to use it. But, having it as an option can be very comforting.

Are you on a Disease Modifying Treatment (DMT)? If so, you’ll need to ensure that you have adequate stock for your holiday. You’ll also need some paperwork, just in case the airport authorities question your hand luggage. The supplier of your DMT will be able to help you with this.

Otherwise, have an enjoyable trip.

1 year ago

Thank you stumbler! That is so helpful. My husband has been suggesting the wheelchair so you have just confirmed it for him! Bugger- he thinks he’s right again. Thanks for the advice x

1 year ago

I agree that a wheelchir could be a big help, especially in such a busy place like New York. There are lots that fold up so if you could find one like that, even better! Also I do know that the subway stations there are mostly inaccessible, so like stumbler mentioned, research and preparation help!

Hope you have a great trip, and if your headed to Toronto (where I live) feel free to message me with any questions!

Maybe if you can share a little more of what your concerns are that would help. There are lots of options that will almost surely let you have a great time. Let me know what you think you are able to do and the types of things you want to and I can likely at least give you my perspective.

1 year ago

Re: taking a wheelchair, a folding MANUAL is good, then if you need to you can move yourself. I say because I was stuck, unable to move in a small wheeled wh/ch when my partner disappeared to see a consultant in hospital; it was not pleasant.

1 year ago

And battery charger adaptors for USA! happy travels.

Sorry I just wanted to clarify that I was more meaningwhat are your goals for the trip with your family? You could ride to the Statue of Liberty and probably have lunch on liberty island. You could see the 911 meusum and find places to sit (they also have an auditorium with talks) if you were tired while your family went on and explored the museum more. There are hop on and off busses that will get you to most places but there is a bunch of walking if you don’t plan carefully. If you picked one place to stay at that was more focused on a few things you wanted to do you could cut a lot of moving around out.

So I guess my question was are you concerned on not walking and wanted to make sure things are wheel chair accessible or more concerned on being able to take a nap due to fatigue? Do you have specific budget rescrictions? Feel free to email your itinerary to me if you want me to look it over with specific feedback as well.

It will likely be pretty hot in the summer so another thing to bare in mind.

1 year ago

Thank you for all your ideas! I think the wheelchair idea is definitely a goer so we’ve been looking into it. I love the idea of the hop on/off bus too. I am a wee bit worried about the heat- I’m Scottish so we’re not used to heat and sun! I’m so glad I asked on here. I knew my fellow msers would see me right!
Thanks so much for your suggestions californisdreamin, and we will be in Toronto Melissa so I’ll message you if I have any questions!
Thanks again!😊
Anna x

1 year ago

I went to the US (Washington DC) with my family – husband and two teenagers – last month. I use a stick but not a chair. Because we were very active I borrowed a chair most afternoons – all the museums had them freely available (just needed to leave them with photo identification). It really helped. I also felt better not using one all the time.

That said, unless you are taking your own chair, definitely book assistance at the airport arrivals (both ways). The queue can be hideous. I didn’t and nearly collapsed in the immigration queue after 90 minutes.

Have a fabulous trip

1 year ago

having M.S. and been with my wife to U.S. for last 4 years and had a great time, as stumbler says planning ahead is critical , a wheelchair may be helpful, i use a folding mobility scooter as i cannot propel a wheelchair myself so mobility scooter helps. as to heat i am lucky i am not affected by heat , last year was 90 butt no ill effects , but yu can buy cooling vests etc on internet to combat heat, also all hire cars have air conditioning.As to the road trip, a few tips having been on 4, assume you have a blue badge for parking it can be used in most american states but check before you go as fines are expensive and enforced. pay for fuel before you fill and keep level fairly high as there are some bi gaps between service stations in some parts. dont overestimate how far you can go in one day , the kids will get bored. dont forget most states charge a tourist tax per room per night. some credit cards are not accepted , i have amex that is taken everywhere , we always take preloaded cards as well saves carrying as much cash. assistance at airports is a must, they know all short cuts and some airports are massive. dont leave it to late to get your visas.
enjoy , we went for a one off trip some years ago and keep going back , lastly publictransport is usually ok dont know about new york though. any other questions feel free to ask

yours martin

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