Last reply 2 days ago
Travelling help!

Hello all, after some advice. I am taking rebif and although I dont appear to have had any relapses in the last year, I do have slight cognitive and physical issues with my hands. Also I recently have been referred to a neurologist because of a bulging disk (at this stage not connected to MS) which causes me discomfort standing for periods and a lot of pain in my right leg. I’m due to fly to NYC the end of October with my 13 year old daughter and am quite anxious about a few things. I do have travel insurance and have let the airline know I will need assistance, but I have a few worries I’d like to sort out.
1. Has anyone been to NYC that has similar problem and how did you find getting about/customer service at attractions? On the whole where the tourist places accommodating to you when aware you have MS?
2. Where you expected to provide proof of disability at any point?
3. Would you advise getting a letter about MS/medication (because I have considered trying to take injections around the trip rather than with me but it’s a bit too close)
4. Is there anything else I need to consider?
Any help with this would put my mind at great ease, thanks!

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itsmewithms
3 days ago

Hi- looks like you are from the UK. I am in the US and am used to the required accomodations in public places due to the ADA (Americans with Disabilities Act). Basically you should find some way to get between floors without taking stairs and be accommodated in a public space. Basically all public structures are required to have elevators that are easily accessible. That is they can’t be hidden down a long back alley that is hard to navigate πŸ˜‰ Bathrooms will be required to have a stall of sufficient size for a wheelchair and stalls with hand rails.

You will typically be able to easily find “handicapped parking” in the US which is identifiable by the blue signs with a wheelchair noted on them or painted on the ground. You must have license plates indicating you are handicapped to use them or get a placard to hang on your rear view mirror. It must be hung just when parking and not while driving where it could disrupt your vision. Information on getting a temporary permit linked below or ask your rental car company if they have tags or if they could get one for you.
https://uk.usembassy.gov/disabled-parking-permits-visitors-u-s/

I have traveled a bit since having my hip replacement and found place and people very accomodating. For example when I was a chaperone for my daughter’s band trip to Washington DC they scurried over with a wheel chair for me to use for the White House Tour. I didn’t even ask for it and they ran one over and encourage me to use it for the tour as it was quite long. My daughter pushed me and several others with us used the bottom space to store purses/packages, etc. so it was quite handy.

This gives me an idea that I have been thinking about. Many of us are in different countries or sometimes in the same country but in a different region. We would like to visit that area and know that we know someone there that would understand us and what our needs are or could be. For example I’m not in NY but have friends that are and that may have advice for you and what to see or what to avoid πŸ˜‰ We could be our own little network for our gravel dreams to come true. Me? I’d love to see the London area and Vienna. Anyone want to see the Midwest like the Black Hills/Mount Rushmore? Maybe that will be a future post πŸ˜‰


itsmewithms
3 days ago

As far as having proof of a disability I didn’t really have anything more than a walking stick and people were accomodating at tourist places. You will need a Dr to sign off if you want a handicapped placard/sign for your car for good parking. Hotels have special rooms that are more accessible and have grab bars in the showers, etc.

If you are somewhere and don’t see how it is complying with ADA law you can certainly ask where the “ADA compliant “XX” is and an employee should be able to tell you and know what you are talking about.

One big concept going around the US right now is the “invisible disability” to recognize that all the ways a person may be disabled may not be apparent and may not affect them 24×7. For example I am much better in the morning but fatigue will catch up to me so at night I am shot.

For concerts or public events you can also ask for special seating. Just push the “ADA compliance” angle. With the current mood/attitude in the US I think visitors from the UK will also be very welcome. I’d have some reservations coming from some other countries. I’ve heard travel advisories against the US from some regions and that just saddens me.


rivka
3 days ago

Great idea @itsmewithms!! Our own MS travel network. Of course, I now hate to travel, it’s too hard on me physically, but anyone wants to visit Jerusalem, hit me up for info!


itsmewithms
3 days ago

I see that you are on Rebif. I have traveled with Rebif and it doesn’t need refrigeration as long as it stays within a certain temp range. I have brought it with my in my carry-on luggage but always had the prescription from my Dr with me.
https://www.cdc.gov/features/travel-medicine/index.html

The nurse support group that always calls me to check on how I am doing with Rebif is MS Lifelines https://www.mslifelines.com/ I don’t know if their nurse line supports international travelers. But you could try it.

The drug isn’t in the narcotic family and that is the one really being cracked down on now. There will be little red boxes attached to walls usually for needle disposal. Do not throw them in garbage so you don’t freak someone out. You can ask the hotel about disposal and they would prefer that.

Others will likely respond that are much more local, I am over 1000 miles from there ;-0 but have traveled there and had a good time. I was especially surprise how friendly the people of Manhattan were. Enjoy your trip!


itsmewithms
3 days ago

@rivka maybe traveling wouldn’t be so daunting if you knew you had support once you got there. Maybe we limit ourselves too much? πŸ˜‰ Pace yourself and have reasonable expectations. But we all have to know our limits…but I push myself past that limit and often too frequently and too far so maybe people shouldn’t listen to me ;-0

Jerusalem is central to so many faiths you may get some business! My dad went there with a friend a few years ago and really enjoyed it. He especially talked about Petra when he returned. Fascinating.


rivka
3 days ago

My days of pushing myself past my limits are over but I have worked through accepting this, @itsmewithms. We do get many international visitors here in my amazing town. Petra in next door, in Jordan.


emma_holmes
2 days ago

Thank you for your response, very lovely of you. I’m very excited and the only thing I’m worried about is I havent travelled in my current condition and I’m feeling a bit anxious as I’m not sure what to expect, but also very excited!
I’m not driving, so that’s one less worry.

London is one of my favourite cities, but fast paced, but there is help when requested.

I’m hoping all will be fine and as I have s couple of weeks yet, I’m hoping I’ll be in even better shape then 😊


emma_holmes
2 days ago

… I am in the UK, sorry my response didnt post back close to when you first posted.

Before things progress I want to try and travel as much as I can with my daughter, financial situation permitting, so I do think more needs to go into this for us and others with ‘invisible disability’.

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