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Disabled travel experience, advice from member

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  • Disabled travel experience, advice from member

    Hello my Multiple Sclerosis friends. My wife (primary caregiver), and I recently attended the wedding for our son in Sicily. Yes. Sicily, Italy! July 22nd 2022. Hot as heck. Yet, I made it through the wedding and reception with a liquid circulating cooling vest. Just understand my normal temperature these days is 97.5. If I go as high as 98.5 I'm a non-functional mess.

    Sicily is not a handicap frien dly area. I was in a folding travel power chair. I had to travel with a Roho seat pad. I used it always. It is the pad from my Permobil power chair (my usual ride.)They got married in a beautiful, old, but hot, church. After those events, I just stayed in the air conditioning in the hotel or wheelchair accessible van, that my wonderful son found and rented for us. (https://goo.gl/app/maps/qDWJoMJ9MD9Wa5Xf9?_nr=1) So, even in Sicily it is possible. When I was up to venture out, it was with a large brimmed hat and cooling devices.

    My wife brought all of the medical supplies that I might need. The airlines flew all of that stuff (medical, wheelchair & accessories, cooling devices) for free. Make sure you carry on extra meds & medical supplies just in case. At the door of the aircraft, we folded up the power chair, covered it in its travel case and I was transferred by airline personnel into an aisle chair, and then lifted into my seat. The wheelchair met me at the aircraft door again at the end the flight. We had a long layover (5 hrs) between flights, which is good since I was the last passenger to leave the plane each time. We carried extra supplies, snacks, water and thickener, etc for long flights and layovers, and in case our bags got lost. They didn't fortunately. One of our family members was not so lucky and had to buy/ borrow clothes for the wedding. We splurged and flew business class. That way I could lie down. I've been battling a sacral wound for years. My skin now is prone for hot spots. So laying down with the ROHO pad was the only option for me.

    We traveled with my wife, son and his wife. They were my " pit crew" before during and after each flight. Frankly, I couldn't have done it myself. Given my lack of ability to help. We both arrived I think 4 days prior to the wedding, for time change adjustment. I spent a few days sleeping and felt better. It allowed my wife to go out and explore at least. So, carry on you probably are a bring meds and medically to supplies.

    My wife intermittent cathed me. Condom catheters while sleeping at the hotel. Also the stuff for bowel care & wound care. We were there 10 days. So take what you need, plus some extra just in case! You never know when you might be delayed. So plan on it !!( Oh by the way, I'm entering most of this stuff via voice into my notes program on my my phone.)So a partial checklist for you: Split up carry on and checked bags_ Daily medicine in travel plastic cases. (we use)_ Antibiotics (just in case)_ wound care supplies _ bowel care supplies _ urine care supplies_ bring extra of all that you need (we added 3 days)?_ appropriate clothing and hat (hats with wide brims for me these days) _ extra set of clothing in carry on. Plan on being separated from your checked baggage ! Call the airlines ahead.

    My wife did for every portion of the travel. Multiple times. Make double sure. There should be no surprises for your carrier/s. They will also let you know about any suggestions for labeling your medical supply luggage, wheelchair and wheelchair parts bag, etc. Understand folks are short staffed. The person you talked to months ago, "we got this". May not be the same person. We took extra stuff off my wheel chair, like the joystick, headrest, footplate, cupholder, etc. Anything that could get broken or damaged in transit. Put it in a well marked bag we could spot. Carrier at every leg knew we had take things/items off in the jetway. Had to be back on in the jetway.As I remember, one place kept me strapped in aisle chair. We kept the wheel chair accessory bag with us. Put my accessories back on in the terminal. 2 to 3 hrs layover or so in the US should work.

    So, we did it and so can you. You already know that every thing we do is a new adventure. Take care out there and enjoy your travels.

    Margee & Nick
    Dave Bexfield
    ActiveMSers

  • #2
    Thank you for the info and all the detailed tips. Glad you were able to have a good trip!

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    • #3
      I like your story! It's great that now we can go somewhere and not miss such significant events as a wedding. I'm sure you'll have many more reasons to go somewhere!

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