Old 05-30-2016, 01:24 PM #1 (permalink)
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Default Can I take a trip

Every year I have traveled from Reno, NV to Grand Rapids, MI. One of my best friends picks me up from the airport and we go to Ludington, MI where my other best friend has a condo right on Lake Michigan. It was difficult last year, but I used a cane and got lots of help from my friends. We then have friends from high school come and visit and have such a wonderful time.

This year I got diagnosed one month ago with ALS and I desperately want to go on this trip one last time. My adult daughter has agreed to go with me.

These are my questions:
I cannot walk on my own and use a walker and for longer walks, a manual wheelchair. I will bring these with me. Last year I was in a airport wheelchair and I was able to walk to my seat and to the bathroom in the plane. It was difficult, but I did it.

If I go this year, I cannot walk. Can my daughter and the Southwest Airlines staff get me to my seat? Also, what if I have to go the bathroom? I cannot lift myself off the toilet seat either and need help. If there are bars on both sides of the toilet, I can still lift myself. Is there room for my daughter to come into the bathroom with me to help?

These are my only concerns. Once I get off the plane, I will have lots of help.
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Old 05-30-2016, 02:05 PM #2 (permalink)
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Default Re: Can I take a trip

OK, my suggestion is probably off the wall but it is what I would do. First, make sure you have a bowel movement before getting on the plane.....even if you have to do an enema. Then wear an adult diaper. Many people fly with incontinence. If you have to use it, use it. If you don't.....so be it.

Go....and may God bless your trip.
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Old 05-30-2016, 02:27 PM #3 (permalink)
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Default Re: Can I take a trip

You can definitely go!

I just returned from a trip to Copenhagen Denmark and around the Baltic sea. Just let the airline know your needs. You will be fine.

The plane ride was the hardest part for me because of leg cramps/aches and not a lot of room but that was a 10 hour flight.
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Old 05-30-2016, 03:02 PM #4 (permalink)
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Default Re: Can I take a trip

Is this one or two flights? The airports have good accessibility if you have a stopover.

My recollection is that the bathrooms in planes have bars but a more recent flyer will chime in.

There are staff to help get you into your seat. Of course, you should go.
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Old 05-30-2016, 03:55 PM #5 (permalink)
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Default Re: Can I take a trip

One more thought to anyone reading this.. PLEASE if you want to or like to travel do so.

As all of you know we have limited time and as uncomfortable as it can be at times the memories and joy it brings those we love make it so worth it. Plan as many trips as you can afford and GO!

I highly recommend any of the American based cruise lines; Royal Caribbean, Princess and Carnival they are extremely helpful and the trips are truly relaxing, handicap friendly, affordable, and enjoyable.
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Old 05-30-2016, 05:58 PM #6 (permalink)
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Default Re: Can I take a trip

I have not booked the flight yet because my family did not feel I should go. I will be reading your comments to them, and I am sure this will change their minds.

Usually I have one stop over, so I should be okay bathroom wise. Just in case, I'll wear the adult diaper.

Pete - My husband and I have taken several cruises and we always enjoyed them. Because of your encouragement, I think we will be taking another one. You are right, are time is limited.

Thank you so much,
Deb
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Old 05-30-2016, 07:59 PM #7 (permalink)
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Default Re: Can I take a trip

Pete is right....travel all you can. Accomodations can be made for you to travel safely and comfortably. Enjoy it!
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Old 06-05-2016, 03:53 PM #8 (permalink)
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Default Re: Can I take a trip

I have had good experiences flying on Southwest -- very kind people! I recently also flew on American (not as caring, but ok) and Air Canada (wonderful). I have flown with a wheelchair before, but this time took my own scooter. All the airlines were very helpful; I was able to drive it up to the door of the plane. Was nervous about taking it as I've heard some horror stories about damage, etc., but had none at all. I can't speak to the bathrooms, as I was able to wait until I was in the airports. Just returned from a Royal Caribbean cruise & they were very helpful, but I think a lot depends upon the ship & how big it is. I like a smaller one myself. Also had a great experience with Norwegian. I use a travel agent in TX who specialized is cruising for those with disabilities -- she has traveled all over in a wheelchair and/or scooter and is familiar with the needs of people with ALS. Haven't met her as she's a few hundred miles away. If you're changing flights, make sure you have plenty of time between them in case your original flight is late.
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Old 06-13-2016, 10:57 PM #9 (permalink)
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Default Re: Can I take a trip

Hi Faithandlove - yes, please GO!! LIVE & enjoy while you can!! Allow yourself lots of time (check in hours ahead of time) and see if you can get a non-stop flight. Make sure you book an aisle seat. You can take a wheelchair and check it. It can be checked at the airlines front desk or "gait checked" at the end of the airplane "gangplank" as far as I know. Airlines all have a narrow, transport w/chairs that can move between the aisles. The airlines are not obligated to help you access the restrooms, (as far as actual entry and use of the b/room), but I think they keep the transport chair onboard and can help you to the door of the bathroom. The adult, extra absorption diapers (or an added pad inside) are used a lot with persons with disabilities when traveling on an airplane.

My PALS and I have just booked a "life list" / dream trip to Italy and a 10 day cruise from there. We will figure this out as we go along, but suffice it to say I am more afraid of just going day to day waiting for my PALS to die from this nasty disease than I am of any anxiety regarding travel!! We will be prepared, and I will either purchase or rent a lightweight transport chair.

Also google "accessible travel" and you will find some helpful resources!
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Old 06-13-2016, 11:05 PM #10 (permalink)
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Default Re: Can I take a trip

Thank you all for the helpful information. I booked my flight and my daughter and I will be going in August. Also, because of everything you said here, my husband and I are going to go on a cruise.

Hugs,
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Old 06-14-2016, 05:38 AM #11 (permalink)
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That is excellent and where will the cruise be and on what cruise line?
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Old 06-14-2016, 07:23 AM #12 (permalink)
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Default Re: Can I take a trip

Deb, I'm so happy for you!
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Old 06-14-2016, 11:34 PM #13 (permalink)
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Default Re: Can I take a trip

Probably Princess or Royal Caribbean cruise lines, but not until this fall.

I'm a little overwhelmed with all that we have to do to get prepared for this new journey in our life. I just signed up for Medicare, spoke to the Vice President of the ALS Chapter in Nevada (who lives nears us and is willing to come over when I need - he's pretty cute, so I think I'm going to need him a lot), have an appointment to buy a lift chair, and an appointment with the new ALS Clinic here in Reno, NV. They have two clinics in Las Vegas, but did not have any in Reno. Now they do - YEAH!!! Traveling to San Francisco has been difficult, so this was excellent news. I feel so much better to have so much more local support.

Thanks for all the encouragement. I needed to hear your wise words of wisdom to get over the fear of traveling with this illness.

Hugs,
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Old 06-15-2016, 02:28 PM #14 (permalink)
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Default Re: Can I take a trip

Hi, my name is Purplespider and here are a few tips in which you can do to ensure a safe trip for you:

1. Check with your doctor to make sure that you are cleared to travel.
2. Get a doctor's note from the doctor to make sure that you can travel.
3. Call the airlines and tell them about the special seat request.
4. Contact the airlines information line to "double check" and see if you have all of the information that you need.
I wish you the best. Purplespider, CNA
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