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Topic travelling with husband with parkinsons Go to previous topic Go to next topic Go to higher level

By sunshine On 2011.04.29 01:25
My husband would love to travel and we have in the past. I find myself hesitating to travel now because his health fluctuates easily with changes in routine, stress, and hot climates. Plus he does have a problem with incontinence both bladder and bowel at times. This is not a regular occurance but does happen if he gets anxious. I find for myself, I have to be calm, in control of everything and on my toes to make sure that all goes well. I am not complaining because I am very grateful that I am able to be all these things. I just worry now about all the preparation, the responsibility and anticipating anything that might happen. Not to think negatively, but just to be prepared for all scenarios. We really want to take this trip together. Does anyone have any experience they could share regards holidays and travelling and what has been helpful, what has worked and what has not. I love to see my hubby smile and give him happiness and I just know that if we can take a trip he would be delighted. Am I being a little unrealistic. Has anyone had any experience cruising, flying on planes etc.
Thank you in advance for anything you can share. Hugs to all.

By jockdoc On 2011.04.29 07:28
Yes sunshine, Barb and I went through the same "check list" you talked about. Don't forget to pray! Flying Airtran into Atlanta we just got her back in her seat as the wheels came down. Thanks to a good Flight Attendant we landed "dry." I encourage you to make that trip. There will come a time when travel won't be possible but, you will have memories. You are a "Hero" Caregiver. Jock Doc

By LOHENGR1N On 2011.04.29 08:31
sunshine, jockdoc has good advice on this. Do what you can while you can. This disease takes so much, don't give it away make parkinson's disease have to work for it. Go enjoy as Doc said you'll have memories and those are better than regrets. Take care, besy of luck and hang in there.

By sannph On 2011.04.29 20:12
I'm so glad you brought this up. I will be watching for helpful info. We already have a trip planned in about 2 weeks; we will have a drive to airport and then a 4 hour flight. I'll let you know how it works out when we get back! I too am trying to plan ahead for what could go wrong!

By parkinit On 2011.04.30 00:16
We just got back from flying to Houston this week. Going down, we had a connecting flight in Dallas. My suggestions for a smooth flight:

1. If family is available, ask someone to help you get the bags to the curb, park your car in the airport parking for you, and meet you once your flight returns to assist you back to the car. My spouse is wheelchair bound and this was an immense help.

2. If you have medical devices, such as a CPAP machine, this is not usually considered as a bag for your normal "carry on luggage limit." Call ahead to make sure.

3. Contact the airlines to be traveled and notify them of travel with a handicapped spouse. Most airlines are extremely accommodating. If your spouse is wheelchair bound, request an "aisle wheelchair" to be available to assist getting down the aisle. Upon checking in, request bulkhead seats as they are near the front and have more leg room. Some are also the exit aisles, so they may or may not let you make this request, but they WILL put you closer to the front if possible. The airport will push your spouse through the airport while you handle your carry ons. They will push you right up to your gate. A small tip is always appreciated, but I've found some airports break this service up into 3 "pushers" to reach a particular gate in larger airports, so tipping all of these "pushers" becomes quite cumbersome.

4. Take your own wheelchair. You can wheel it to the gate, seat your spouse, and check it right there as luggage. It will probably be waiting on you when you exit the airplane as well.

5. If incontinence is an issue try the leg bards which hold a small amount of urine and TEST THEM OUT before the trip to ensure they don't leak and the spouse feels comfortable wearing one. Also, use depends if incontinence is an issue.

6. Ask about family restrooms on airports. They are wonderful and allows you to assist your spouse. They can be found in larger airports.

These are tips that were useful on our recent trip. Hope they help you as well...

By jockdoc On 2011.04.30 07:29
Very Good parkinit, You thought of everything. I suggest travelers with PD persons make a copy of your "check list" and keep it for further travel plans. JockDoc

By mrsmop On 2011.04.30 22:10
Have found that going on a cruise was a good option. You unpack only once, and cruise schedules are rather flexible. The tours were graded in terms of difficulty and whether they could accomodate a wheelchair. Also found that the cruise ship staff tend to be very willing and helpful. They assisted without being asked. You can also request a handicapped room if needed. My spouse lost his wallet on the second day and it was returned completely intact. Also found other guests with impairments using walkers and electric and manual wheelchairs. good luck.


By karolinakitty On 2011.05.01 21:00
Sunshine... we don't fly but travel "on the road". We just came back from an 1800 mile treck... it was great!!!! Got to meet some other folks with PD and have some chuckles and do some bucket list things.

I do all the driving now. It takes us longer to travel than the norm as I stop every couple hours for him to stretch, walk and maybe check out things.

I have a huge check list, but I also have an iPhone..... miracle for the caregiver.
THings to keep in mind.. if your are road worthy...

Watch for rest areas and how far they are apart...
Incontinence may be an issue, but for you gents it's a quick pull over..
I carry lots of clothes... spills-accidents- you need a good change....
Pills.... I always carry more than i need and in two sperate pill boxes..just in case i lose one or spill one out
Now that it is warmer i carry more drinks and ice....
I always have snacks for the 3am snack on the road ones...

Because of all the additives in fast foods we haven't eaten those for years, so stopping for that is out...i make "sliders" for the road....another cooler and more ice..but it is better all the way around and cheaper
Ibuprofen just in case we get twitchy between stops

That's i guess it for me...
do i feel overwhelmed... nope... got it down to a science now.. the more you do it the easier it becomes....
my iPhone has my list so i always check it before we leave
Plus its my pill reminder.. lists the docs..all the meds he is on...all that right in my hand......
If you enjoy being on the road as we yourselves a favor and go.....
Yes it takes more time to sight see
Yes you have to be on your toes
yes you can get more tired....BUT
you only have so much time left with your loved i have a signature on my emails that reads.....
"Life is Precious...Cherish every moment"

By parkinit On 2011.05.03 12:18
karolina -

Additional good tips for the road. Thanks.

I've often thought a travel trailer or motor home would be nice for those with Parkinson's in travel. Is this how you travel? This way, he could walk around a bit, lay down when needed, etc. I'm interested to hear if others travel using a motor home.

By karolinakitty On 2011.05.03 16:21
Hey Parknit..No we don't have a mobile home or travel trailer. What we have is a Chevy Express Van 3500. It's a work van we bought several years ago and converted it as we used to do catfish tournaments.
It's real basic...
we have a headache rack or bulkhead we installed about 1 seats depth behind the seats. I bought a leather and padded parsons bench, that I also cover with 2 sleeping bags for a bed. Shutting off the back from the front really helped in keeping it cool and warm in the front. There is not enough room to stand up but beings he's stooped anyway,(lol) he has no problem moving from the seat to the sleeper. We however are in the midst of another adaptation. Not sure yet how we want to do this but are thinking of taking out the parson's bench and installing a full recliner seat for a conversion van and have him rest on that. i am training our dog for service work for him.. I'm no trainer so it's taking a long time for me, so we want to have room for the dog as well as coolers, garbage can and a porta-pottie... they make them for boats and campers that are not very big but i'm thinkin if we put it on top of a 5 gallon bucket it would work and be very handy.
He doesn't drive anymore so it's me in the drivers seat, but he still has a ball going on the road... We stay at whatever hotels we find so it is always an adventure. We never plan a trip we just go.....

By LC On 2011.05.15 14:30
We just returned from a plane trip and my DH managed pretty well. He was very nervous though.Thanks for the all the great suggestions Parknit! At least now I feel like our traveling days are not over.

By parkinit On 2011.05.16 02:52
LC -

Glad you four the info useful and that you had a good trip.

By Lacy On 2011.05.17 09:20
With regard to a motor home or travel was always our dream to retire and travel in a motor home. He retired with Parkinsons, I'm still working. Go figure! But....I took it upon myself to buy a motor home a year and a half ago because I knew travel with him by any other mode would be difficult...what a godsend this has been! We have plenty of room for his walker, even his electric scooter, he has a bathroom, bedroom, kitchen facilities and can get up whenever he feels the need to move around (of course I pull over).
Motor home is 37' long (not really necessary to get one that big) and I took to driving it immediately. Our little dog travels with us and it's the easiest method possible for hubby (and little dog) to see the country, visit friends and family, and still have all the comforts of home.
We go camping at least once or twice a month with my sisters so he gets to be a part of all that and thoroughly enjoys it! If it's at all possible, go for it and don't be afraid of the challenges. The challenges are nothing in a motor home compared to hauling luggage, handicap parphenalia, getting into and out of restaurants and restrooms, and checking in and out of motels...not to mention all the packing and unpacking.
But if the motor home or trailer is not an option, I say the cruise is best....GO FOR IT!! I enjoy every single minute I have with my hubby these days because I never know what the next day will bring. He is a joy to take care of at this point and I want him to experience everything possible while he can.

By overwhelmedinFL On 2011.05.17 11:35
My reccomendation is to see if you have any friends or family that would like to travel with you.

You can have them help with you can focus on your husband and just having others around will relive much of the stress and anxiety on you.

We took my mom on a cruise in Novmeber. She is completely WC bound and needs assistance to transfer 100% of the time... It was originally going to be just my sister and I taking her. Thank goodness my four brothers stepped up and we all took mom.

We all needed little breaks from time to time.

I suggest like others said that you go NOW...before you can't. You are a GREAT caregiver.

By buffsrich On 2011.05.17 15:14
I wish I would have known all this a few years ago. Now it's hard to even get her to the city she was living before she shacked up with us (only an hour away). We'll ask if she's gone to the bathroom or wants anything extra for the trip and then we'll only be 15 minutes from home and she's got to go or she'll suddenly want a piece of gum or a cup of water. These aren't really "requests", these are demands and if not met she gets darn mean with you.

I really love the motorhome idea. We may have to do that this summer for a trip to the beach/Outer Banks.

By sannph On 2011.05.20 13:56
We are back from a wonderful trip to visit our kids in CO (we're in PA). Hubby did well in spite of his nervousness about travel. Airport staff were all helpful; getting through security was a bit overwhelming, but we made it. Boarding and getting off the plane went well. 2 staff assisted him into/out of aisle chair, and we brought along his wheelchair. He has incontinence issues, so we did double Depends w/o discomfort and that worked OK. Our daughter also went along, and it was a huge help to me to have the extra person to deal w/ our luggage. Now that we know how it went, we'll be likely to go again.

By parkinit On 2011.06.01 19:07
Helpful travel information on the National Parkinson Foundation web site:

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