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Old 02-28-2014, 07:18 PM   #1
billwendy
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Traumatic Brain Injury strategies

Hi!

I'm starting to plan a trip to Disney. I've been many times, but this time is a little different. I've had 2 tbi's in the past year. Now my trip isn't till December, but, I want to plan, and then be surprised if and when I make progress in therapy and don't need strategies.

I'm easily overwhelmed by crowds, unexpected sounds and strong smells. My balance isn't great and right now I use a walker or a cane. I have a Jtube and right now am feeding 24/7, but do eat by mouth some as well...but taking in liquid is rough for me. I have to carry my kangaroo Joey feed and flush pump with me in a backpack. I understand well, but have difficulty with focus and sometimes ire tigon following. I stutter when I'm excited or nervous. I have issues with my vestibular system and dizziness as well.

This will be my first big trip since my Tbi. I know I'll be emotional just recalling the difference in life for DH and I since the last time we were there....but I'm still me inside, a great Disney lover, and soooooo thrilled to have this trip to look forward to as a goal! A wonderful group of friends are sending Billy and I and we are beyond excited!!

Sooooo, I'm looking for your best tips!!
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Old 02-28-2014, 07:52 PM   #2
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Hi Wendy!!! I want to say how wonderful that you are working on your recovery and have a Disney trip to look forward to. I was thinking of some strategies for you...such as just thinking of this trip as relaxing, time to unwind, feel the sun on your face and the joy of being at Disney. I would go to the parks at rope drop when crowds are less. Do some attractions that do not have loud, surprise noises and then see how you feel. If you start to feel it's too much, go back to the resort or to Downtown Disney or Boardwalk and relax a little. Hopefully, your feeding will improve and even if you can't tolerate a large meal. Maybe just some special snacks that are things you enjoy and that won't cause you any problems. Go for the experience, do what you feel you can and enjoy being there and being together. I Hope that you have a wonderful time and I wish you all the best in your recovery. You got this!
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Old 02-28-2014, 07:54 PM   #3
livndisney
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Quote:
Originally Posted by billwendy View Post
Hi!

I'm starting to plan a trip to Disney. I've been many times, but this time is a little different. I've had 2 tbi's in the past year. Now my trip isn't till December, but, I want to plan, and then be surprised if and when I make progress in therapy and don't need strategies.

I'm easily overwhelmed by crowds, unexpected sounds and strong smells. My balance isn't great and right now I use a walker or a cane. I have a Jtube and right now am feeding 24/7, but do eat by mouth some as well...but taking in liquid is rough for me. I have to carry my kangaroo Joey feed and flush pump with me in a backpack. I understand well, but have difficulty with focus and sometimes ire tigon following. I stutter when I'm excited or nervous. I have issues with my vestibular system and dizziness as well.

This will be my first big trip since my Tbi. I know I'll be emotional just recalling the difference in life for DH and I since the last time we were there....but I'm still me inside, a great Disney lover, and soooooo thrilled to have this trip to look forward to as a goal! A wonderful group of friends are sending Billy and I and we are beyond excited!!

Sooooo, I'm looking for your best tips!!
Sweetie, I am sending you a message on FB.
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Old 03-04-2014, 08:52 AM   #4
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Wendy,
I just read your post, and wanted to say that I'm so sorry for the health issues you have had! My dd was a wish tripper and Big Give recipient in 2010, and we participated in the Big Give after her trip. I know from the last few years on the DIS, Wish Tripper thread, and Big Give that you are an incredibly generous giving person, and undoubtedly deserve all the magic that this trip will bring. Glad to hear you are making positive steps towards healing!
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Old 03-04-2014, 09:06 AM   #5
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Wendy,
I just read your post, and wanted to say that I'm so sorry for the health issues you have had! My dd was a wish tripper and Big Give recipient in 2010, and we participated in the Big Give after her trip. I know from the last few years on the DIS, Wish Tripper thread, and Big Give that you are an incredibly generous giving person, and undoubtedly deserve all the magic that this trip will bring. Glad to hear you are making positive steps towards healing!
Hi Laura! Thankyou so much! I'm getting there, seems like one step forward and 2 steps back...lol...but forward is where I'm headed! Thankyou for your kind words. God is teaching me so much through this experience, and now I've been ob both sides of the therapy coin since I am an OT and now I get OT, PT, speech and vision therapies...lol....I really want to be able to help and advocate for others with Tbi. I've also been encouraged to take a try at writing and am dabbling in poetry" I think I write better than I speak right now! lol.....

I hope you guys are doing well! I love the big gives...you guys are amazingly!
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Old 04-26-2014, 10:03 PM   #6
tec71
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Quote:
Originally Posted by billwendy View Post
Hi!

I'm starting to plan a trip to Disney. I've been many times, but this time is a little different. I've had 2 tbi's in the past year. Now my trip isn't till December, but, I want to plan, and then be surprised if and when I make progress in therapy and don't need strategies.

I'm easily overwhelmed by crowds, unexpected sounds and strong smells. My balance isn't great and right now I use a walker or a cane. I have a Jtube and right now am feeding 24/7, but do eat by mouth some as well...but taking in liquid is rough for me. I have to carry my kangaroo Joey feed and flush pump with me in a backpack. I understand well, but have difficulty with focus and sometimes ire tigon following. I stutter when I'm excited or nervous. I have issues with my vestibular system and dizziness as well.

This will be my first big trip since my Tbi. I know I'll be emotional just recalling the difference in life for DH and I since the last time we were there....but I'm still me inside, a great Disney lover, and soooooo thrilled to have this trip to look forward to as a goal! A wonderful group of friends are sending Billy and I and we are beyond excited!!

Sooooo, I'm looking for your best tips!!
My wife has a TBI from a car crash in May 2010 (man ran a stop sign). She was in a coma for a month and in a BI rehab facility for four months. We had been to Disney World twice before the crash. About a year after the crash we went back to WDW for the first time (actually over the anniversary of the crash because we wanted to be out of town), and have been there a total of seven times since the crash. As I'm sure you know one TBI is not the same as the other so our experience may not be totally the same as yours. I don't know that I have a ton of earth shattering tips, but given that I've been there so many times with someone with a TBI (and we are going back at the end of May 2014). We are annual passholders currently. So that unique cross section of TBI experience and WDW experience probably makes my perspective a little unique.

We have stayed off property and on, but have settled into staying the CBR the last four times or so. I have found that the familiarity of the surroundings is helpful for her. While she wouldn't have tried it the first trip back she has gotten to the point where she has navigated the buses by herself. Last trip we even left her at AK when DS7 wanted to go back and swim. She wanted to stay and take pictures. (She's even driven to MK from off property once while I was at a conference). I start with all that because given that you are relatively new in your TBI recovery, please know that while your body/brain may not recover perfectly you can learn to cope and overcome.

Simply put the best strategies are the ones any experienced Disney parks visitor uses. All the tips and strategies that you find in the books and online to ease wait times, find shade, and avoid crowds etc. are monumentally important when you are planning a WDW trip with a TBI survivor.

That being said the thing I find good for a those with TBI in a WDW vacation versus other vacation is the encapsulation. (We don't do Universal or Sea World and rarely go to the beach etc.) We are doing Disney and that's it. We know what to expect. We know where to go. We are experienced. We have a routine. I think that's reassuring to my wife.

My wife likes the familiarity of the surroundings and the routine. On park days (and most of ours are park days) based on the time the park opens she knows what to expect for the morning routine of getting to the park. Based on the park she knows what we will do when we first arrive etc. based on our prior trips before the crash and now based on several others. She has her places she likes to eat and for the most part we are able to accommodate that. I think the FP+ has helped because it's taken away the need to get to the parks at the crack of dawn to get a FP for Midway Mania etc. (although we still are rope drop people to avoid the crowds). I find having a plan for the trip overall and the day helps keeps things on an even keel.

The #1 problem at WDW for those with a TBI I would guess is the crowds. My wife doesn't have nearly the problems with crowds that many do, but can get snippy with people she perceives as rude. She can get impatient trying to navigate through crowds especially when she doesn't like all the things Disney rookies do (like stop to look at their map in the middle of a flowing crowd). this might be more the fact that we can be WDW snobs in that regard than the TBI. Anything you can do to avoid crowds is great. What time of year you go. Getting to the parks early and leaving when everyone else gets there. Using your FP+ for rides or for the private viewing of parades. Paying for the Tomorrowland Terrace Dessert party if you want to avoid the fireworks crowds etc.

The best general strategy would be to not try to do it all especially if you only have a limited number of days or your days have to be shorter due to stamina issues. I believe that we've really found a peace in our WDW visits that many never do because we approach it this way. While we have a plan, we take our time in the parks after we hit our first choices in the morning. We skip rides when we are tired and the lines are too long. Nothing is a must ride for us anymore.

I can totally understand the emotion of returning to WDW post TBI. Our first trip back was very hard, but also very rewarding. We lost two children in the crash, and one survived so everywhere we went there were reminders of "pre-TBI" things. There's the spot at the TTC where we always took our family photo. There's the spot my son always had his picture taken on the steps in front of the brownstones in HS. There's the pool my son learned to swim in. I actually cried walking around HS one day due to all the reminders of pre-crash life, although ironically I don't know that my wife with the TBI ever did. I almost couldn't get on the Star Wars ride (my son's favorite ride) on the first trip.

If you are staying off property or will be driving into the parks each day, and you have a handicap parking pass do not forget it. It's a true life saver. If you are staying on property and riding the buses even better. Buses and parking permits limit how far you have to walk (as long as you can stand to wait for the buses) so they are great.

We have never used a GAC or DAS so I can't really comment on anything specific to that. My wife was to the point in her recovery when we first went that she didn't use the walker or cane, although the first trip was our first big challenge without having those available as back ups. We investigated ECV and wheelchairs etc. but in the end she elected to roll the dice. She did work very hard in rehab and exercising on her own to get herself ready for the parks that first time. She went for walks everyday gradually increasing the distance. For the first trip they even worked on "WDW Park" type stuff in PT, OT and Speech.

The challenges that WDW presents to everyone (crowds, heat, lines, stress, etc.) are particularly challenging to those with TBI. As such, I believe that WDW is maybe the ultimate test of those with TBI. It is a great plan to set a goal so that you have something to work toward, and nothing could be more rewarding than a WDW trip.
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Old 04-27-2014, 04:33 AM   #7
OrlandoMom2
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WOW, Thank you so much for this post. I was recently diagnosed (last Monday) with a brain tumor and surgery is set for this Tuesday. Noise has already begun to be an issue with me as different tones and pitches cause great irritation and I find myself plugging my ears lot My balance has gotten so bad I feel like I have endulged way to often So I am looking at the time I can walk straight and just be me again.
I am going into this knowing it will result in "best case scenario" but also trying to brace for the unknowns. I am lucky enough to live near the World, so we are going to have my last Epcot day today (for awhile)to see Hermans Hermits, very sad I will be not seeing Starship next week.
to OP, I am so happy to hear of your successes, and wish a very speedy and continued recovery

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Old 04-27-2014, 07:40 AM   #8
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WOW, Thank you so much for this post. I was recently diagnosed (last Monday) with a brain tumor and surgery is set for this Tuesday. Noise has already begun to be an issue with me as different tones and pitches cause great irritation and I find myself plugging my ears lot My balance has gotten so bad I feel like I have endulged way to often So I am looking at the time I can walk straight and just be me again.
I am going into this knowing it will result in "best case scenario" but also trying to brace for the unknowns. I am lucky enough to live near the World, so we are going to have my last Epcot day today (for awhile)to see Hermans Hermits, very sad I will be not seeing Starship next week.
to OP, I am so happy to hear of your successes, and wish a very speedy and continued recovery

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Praying for a speedy recovery for OP and you as well.
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