Hi,

First off good for you for taking the plunge to travel. It is needed by everyone and once you do it once you will learn so much and get so much more confidence.

Before I or anyone else can give you much advise we need a lot more information.
1. Good trunk control can mean various things. Describe good. What is his level of independence? Can he transfer independently at home? Does he use a hoyer lift? Do you help with the transfer with a gait belt and stand-pivot?

2. Have you booked the room already? Did you ask specific questions about the room? Never just say you need an accessible room, you have to be specific as to what you need and want and what you MUST have. Not all hotels have the same standard of accessiblity, it depends on age of the hotel and when their last remodel was. Do you need a roll in shower, tub chair, or bench? If you are using a lift you have to make sure the bed is not on  a solid box frame which is becoming more and more common now days so they don't have to vacuum under the bed or find lost items under it.

3. How do you plan on traveling? Your private vehicle? Airlines? How will you get around once you arrive? Do you have confidence to drive/travel in a strange location, will you need transportation (bus, taxi)? Have you checked to see who offers w/c transportation?  How accessible is/are the things you want to do when you get there? However you're traveling do you have room to take the equipment you need? Lift, supplies, etc. Don't leave anything to chance or expect to get it there it is not always available.

4.What are your plans when you arrive? Do you need reservations for shows, dining, or other venues? Not everyplace can accommodate wheelchair without advance notice especially small local places that may not have been remodeled recently. Most theaters for plays and shows have very limited w/c seating and I have been places where there happened to be a group of h/c people that could not be accommodated because even though they had ordered their tickets in advance they did not specify they needed x number or w/c seats and the ones they had already been sold for the night. Mine was one of them.

Well this has gotten quite long but I hope I have given you some things to think about. Let me just say that this is not meant to scare you but just the opposite, it is to encourage you to do your due diligence because in the end you are your own best or worst advocate.

I am 51 retired school teacher with a T12-L4 SCI Incomplete para with additional issues too. All of that aside I travel often and usually alone, I am in the reservation making stages now of a 8 night trip to Washington, DC (alone). I will fly in then take the subway/bus to my hotel and use bus/subway all week long. I will also take the train into Virginia about 3 hrs to see an aunt that I haven't seen in 15 yrs. I have White House, Capital, Mt Vernon tours already set up and I am not going until May.

I am flying to Long Beach CA in April for an IndyCar Race I go every year, but on Fri/Sat before the race I take the bus into LA and go to a different tourist thing. Last year I went to the Doctors TV show.

I went to Orlando in December and did 2 Disney Parks and NASA. I went on a 7 day cruise alone in Feb 2009. Best time I ever had. I use public transportation or private taxi to get around and have not really had any problems if I do my part. I have learned to make sure I take my charger for my chair because I just take off and really put the miles on and have ran my battery down and had to stop and go and get a push back to the hotel once and another time I had to plug in at a store.LOL

All of those trips are alone but I didn't start out that way this past December 6th was my 4th anniversary of waking from surgery paralyzed. So I have come a long way and learned a lot and made a lot of mistakes.


Good Luck,
Brenda

Hi Brenda,

What a blessing to hear from you. My husband too became paralyzed after surgery. It has been to 2 years now, as I said before.

Well, we got pretty unlucky.. if the primary doctor would have detected the tumor sooner, if she would have thought of ordering an MRI. But, she did not and about 2 years later it got to the point of much difficulty to walk (never in pain) then we went to a 2nd doctor,he found the tumor after having the common sense to order the MRI..

But, here we are 2 years after the surgery (the in between)..well... life has been so very challenging) I will leave that conversation for another blog.

Now we want to dare a bit....perhaps is not so much daring however, since it would be a first for us. I am a bit cautious. I want this first experience to be fun and  positive  for both of us. We are 52 years old and full of health, we want to enjoy our middle age, despite this thing called paralysis.

We are ready to have some fun and travel again.

He is a strong 6'2'' 230lb man; I am 5 feet tall... he currently transfers with minimal assistance from me. I help him by transferring his legs to the floor and from the floor to bed. He uses a transfer board.

We are renting a wheelchair accessible mini van. We have rented it before. I know how to secure the wheelchair and make it safe for him to be on the road. I know what I have to take with us, the daytime disposable caterers and the over night caterer, I know to take the transfer board and the many other  things he needs for his comfort and wellbeing.

We live in Miami; we will be travelling to Isla Morada in the Florida Keys, 2 hours away. No big deal.

We know the hotel is fully wheelchair accessible; we have been there so many times before his paralysis. But, we have never sleep outside our home.after his paralysis.

I reserved a wheelchair accessible room. The roll-in shower will be a treat for him. We do not have one in our home and I have been bathing him in bed for two years now. ** (he has an air bed)** I have managed. Our home is not that big and so there is no other option for us.

He has a hospital bed with rails and an adjustable air mattress. He is used to it. We are thinking to start practicing getting in and out of bed without him using the rails. The lack of rails in the hotel bed, is a concern to me.

I also worry about him developing bed sores. I suppose, I can google things but, I think you and others in this community having travelled before, can give me some pointers as to how to make this a  safe trip. We  both certainly know how to make it fun!

Can you and others please talk to me about this? I might be making a big deal about a 2 nights 3 days mini-vacation. But, I can't help it; this is a big deal. . This is so much more than a vacation;  this is the beginning to really living and just not surviving anymore.

Do you know what I mean?

Thank you, hope to hear more....

Hi,

Yes, I do know what you mean life just happens sometimes. I live just north of Houston, TX. By all means your going to do great because if he transfers with a transfer board you should be fine, height difference shouldn't be that great unless it is a pillow top mattress. Is it a straight or a sliding (Beaszy) transfer board. I love my Beaszy Board but I don't have to use it any longer but I know that it is there if I need it like when I am sick fever, etc and weak.

I don't think that you will have to worry much about pressure sores for just the 2 nights but it is always a concern especially if he has had some before or gets them easily. Mainly I would request extra pillows (I always do) and use them to prop him on side and for pressure relief on knees, heels, etc.  I sleep in a hospital bed too but I have like a memory foam type mattress and I have a little trouble in hotel beds just with turning and getting comfortable. I have to change positions a couple of times in the night if I don't get the pillows just right to get the pressure off. A lot of the time I don't know they're not right until I wake up and realize that I am numb or in a bind (LOL) it's funny really when I tell my friend my leg is numb I have to turn over he is like dah "how do you know your paralyzed thought you couldn't feel your legs" It's hard to explain to people that although it is paralyzed and numb it is a different kind of numb from when it is a pressure numbness or sleep.

Is his chair electric or manual? The roll-in shower is nice but unless you still have to transfer to a bench/chair or go in your wheelchair. I know how he feels about finally getting to get into running water, it feels so wonderful.

I have a Dodge Caravan with the wheelchair ramp, a turning drivers seat, and hand controls. God is good and I have been blessed in being able to get it and be independent.

If you have any other questions or want to ask questions in private you can email me at yahoo.com with the same screen name as here.

Have a great Sunday,
Brenda90159

Hi again Debra,

Thank you so very much for your input.

Yes, I was thinking of taking extra pillows from home and the bench/chair for the shower. We actually have one, although it has ended up being used to put my pillows and bed sheets.  You see, I sleep on a roll way bed next to him. I use the bench for storing my bed items. Our room is small and therefore, it is the only way sleeping next to him is possible and still let him have the space needed to go around our bedroom and into the bathroom in the day time.

He has these space boots; I guess that is what is called. They have prevented foot sores; he has not gotten any sores after coming home. The ones he did get (2 of them) were from his hospital stay after surgery. It took lots of efforts from me and six months later to get rid of them. Once we got the right nurse practitioner, they were healed never to come back. Thank God.

It seems we are going to be fine.

Thank you so very much for taking the time to give me your input.

I know this is not an emotional issue like the ones you and others have read coming from me and other caregivers in this community. But, this is as important to me as the emotional journey from a caregiver/wife. What can I say; this journey of living with paralysis is not easy for any of us.

One thing is for sure. We all want to live and not just survive.

I will say we, the caregivers and our loved ones have two things in common.

Paralysis & love..

Thank you again...God bless you for taking the time in helping me with these important issues.

Great Superbowl was it not??  No matter the team we were going for. Great game!!

Hi Paris,

In addition to what everyone else has said I wanted to point you in the direction of a travel piece I wrote for the website a few months back. One huge thing I learned speaking with the wheelchair travelers was just because somewhere says they are handicapped accessible, doesn't exactly mean they are! For example, f they send you an email confirmation saying it is, be sure to print that and bring it with you as proof.

Most importantly... ask questions! Do your homework, call the hotel, airline company, talk to other individuals living with paralysis or a disability (which you have clearly already done but posting here in the community! )

Here's the link to the piece if you would like to read it over. There is also tips from the wheelchairs users to keep in mind and checklist from a physician about how to stay healthy on the road.

All the best and safe and happy travels! Be sure to let us know how it goes!

Hi Jlo,

I will read it carefully. Thank you so very much. It is truly appreciated! ! I will give you my input. I might have questions,..

Thank you again...