Walt Disney World with Ehlers Danlos Syndrome

I'm curious to hear from you if you have tackled this park with the concern of joint dislocations on getting "bumped" in the crowd. Also, I am curious if a ride has been too rough at a park like this? We have been to Walt Disney World many times.  We avoid the thrill rides and we take long breaks and stop to smell the flowers, but the last time we went we required a wheel chair. I found that this allowed kiddo to participate much longer and it gave her a safe space. When just walking, she can't get very far before her hips, knees, and ankles are too fatigued and with her current and ongoing shoulder instability, the fear of getting bumped is a worry. Please comment with your experiences. I would love to hear how you navigate the "World".
:)

Here are some of our family tips and tricks that we have picked up along the way:

• Go early, take breaks, and don't do it all. The way I figure it, anything we don't cover on a trip is a good reason to go back! It isn't fun if you over do it, and we so often find magic in the unplanned moments in Walt Disney World.
• Go on "green" days. Sites like EasyWDW and Undercovertourist give you advice about which parks are less crowded on which days, and I find that is a good way to travel the parks.
• Use a wheelchair, ECV, or stroller if needed! If walking is not an option for you due to instability of joints or other Ehlers Danlos complication, then take that tool and use it. Also, the extra space it provides you will serve as some protection from getting bumped in the crowds. 
• Wear good shoes. This should be obvious, but orthotics and support are essential when doing walking on a trip like this! Don't let fashion trump smart footwear in this instance.
• Plan ahead. It is very helpful to know what route you will take, what basic rides you want to do, and to schedule your FastPass Plus options in advance. Have meals booked in advance so you have spaces to sit down and rest. We find the long, slow, Disney meals to be a wonderful break from a busy morning or afternoon at the parks.
• Bring ice packs in a small cooler, or instant ice packs. Know where the med care centers are (on the map), and bring required medications in properly labeled containers. Bring any supports you may need.
• Don't park hop. Some may disagree with me on this, and I will say that the exception will be if you go to a park in the morning, take a nice afternoon break at your hotel, then do a second park for a show that night. That is OK, but going from one park to another is adding a lot more walking and travel to your day. I generally plan a day with the minimal amount of back and fourth travel. We will spend a Magic Kingdom afternoon break at a close by monorail resort for a long, slow meal, and a rest by the water before going back to a park. A swim or nap at the hotel is also good. By running from park to park during the day, however, you can wear yourself out just in the process of getting from transportation to the first ride, so I do advise avoiding that when you can.
• Get plenty to drink, stay hydrated, wear sunblock, and follow all the general precautions that would apply to anyone traveling at Walt Disney World.
• Avoid the rougher rides if you can't handle the jostling. For us, the thrill rides are out because our kids are scared of them, but even if they weren't scared, I know my oldest couldn't ride a rough roller coaster, safely. Luckily, Disney has many sit down shows, calm rides, and simple experiences that are still magical without the jarring. 
• GAC card, do you need it? That varies from person to person.  We have not felt the need to use one. When you have a wheel chair, the staff at Disney knows what to do with you and they don't need to a GAC card. If you have a unique accommodation that needs to be made, then it may be right for you. 

So, an average morning for us is to get up early, go to a park before it opens and be among the first in line. We hit our favorite rides, in order that makes sense, and we utilize fastpass plus. We stop for breaks, snacks, shows, or a long lunch. Generally, we are ready to leave the park shortly after lunch and take a break at our resort, or at a restaurant. We can then go back to a park for an early evening show or a few rides with fast pass. Our kids can't make it up to the late shows and they haven't made it up past 9pm on any Disney night in the past few years, so we are early to bed and early to rise. If you are the opposite, you can adjust accordingly.

 As for those unplanned magic moments, there truly are many reasons to go slow. The themes at Walt Disney World are what make such a difference. By going slow and looking at the details, you can uncover magic that is often overlooked. Talking to cast members is often fun and enlightening. I remember during one of our first trips, a cast member noticed our daughters love of reading and she came out of her store and brought a story book. She sat down and read my daughter a story right there in the park, and while that may not sound like much, for my little bookworm, being told a story in that setting with a smiling member of the Disney team was a very rewarding moment. During a different trip, my youngest was so tired, she fell asleep on my lap on a bench. I sat and watched the people go by, saw the show in the distance, and just enjoyed a beautiful day. Once, we stopped to visit the dolphins at the Epcot aquarium and they came right to the glass an interacted with our kids. There are so many moments of surprises and fun that we never would have planned or enjoyed had we been focused only on the rush from point A to point B.

Want to read more? Here is a published article on going through Walt Disney World in a Wheel Chair with EDS. Click here to read . 

Does EDS affect your digestive system? Add travel into the mix and no doubt you have concerns. We have posted many of our meals and photos of the foods we've eaten in Walt Disney World as well as Disneyland online, here. Everything we eat, due to allergies, is gluten free and dairy free. Disney does a great job catering to allergies and diet restrictions due to health issues. Click here to read more.

What is my rib DOING?! Slipping or dislocated ribs and ehlers danlos syndrome

Update: 4/30/15
So, I went to a PT a few months back and he pointed out some general poor posture and hyperextension of the back and stomach, plus using the knees instead of core and so on. SO...he taught me how to squat (much harder than I knew, since I always did it wrong) and he taught me how to use good core posture. He also made me aware of all the wonky one leg balance and stretch motions I made throughout the day that I never noticed.  So, I started concentrating on posture and core. Good good.  He also suggested a tennis ball against the wall and just lean into it when that back rib head starts to shift. So, I have done that ... and it is working!!!
I am so happy that it has been months since my rib has flared up. I just had to share. If you are dealing with this terribly painful and frustrating issue, I advise you to check with a PT or OT to see if you need any pointers on how you hold yourself and how you do your work, in relation to using the "right" muscles. And then, get a tennis ball or a foam roller and I hope it helps you.
I was also given an exercise routine that is hard for me to do, as it flares up headaches and neck aches, but I dabble in it and I will continue to work on it, going forward.

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Ok, so I don't fret about myself and EDS (Ehlers Danlos Syndrome) because my level of hypermobility actually got better as I got older, and I feel pretty good BUT...my ribs on the back right side have been playing a fun game of shifting at the rib head off and on for a little over a year (subluxing).  It is incredibly frustrating and I don't understand what causes it.  The symptoms include feeling like I cannot catch a full breath (constant attempted yawning), and pain in an isolated area of the back (right over the rib head).  It really is such an annoyance.

I learned some stretches to help encourage the rib to go back into position, as it is not truly dislocated, just shifted slightly (sublux). This seemed to help a little in the beginning, but it got worse and over time, it would mix with neck/shoulder pain and eventually starting causing nerve problems.  I do not have time for this!  I need to be strong to help my family, so I can't be out for rib related pain issues.

I found a chiropractor who agreed to help me without doing all the snap crackle pop stuff that tends to give me migraines. So far, he has been a great help in getting those ribs aligned, but it never lasts. I have increased my stretches and I am looking forward to introducing an exercise routine to build arm, shoulder, and core strength. I also have a bit of scapula winging, and reduced muscle strength due to the pain in the shoulder area, so getting started on this strengthening program is sure to be helpful.
BUT, as many of you can relate, it is very challenging to do exercises that are new because of such easy injury. Whenever I add an exercise, I seem to be out of the game for several days with severe pain. It is ... again...annoying! I have found that I can do the elliptical machine without injury, so that is where I will start, with the stretches, and then I hope to add in weights under the instruction of the PT (to make sure I am not using wrong posture and making it worse).

So, I hope this helps, but if you have the answer to this plague, please PLEASE share. I have consulted several doctors and chiropractors, and it doesn't seem like there is an obvious fix?
Also, if anyone has tips for upper and core strengthening while using elliptical machines, I would love to hear that as well!

Ring Splints

The first time my daughter was fitted for ring splints, she was very young and her ability to hold a pencil in school was problematic. She was hyper extending so much she created her own very awkward fist type grasp to write with. Her professionals within the school district told us there was no way to change her grip and nothing to be done.  This information was incorrect, but I didn't know that at the time. As a creative child, she learned to do anything she wanted with that fist type grip, however, her occupational therapists told us that it was causing her some big problems, including nerve damage. The OT was concerned that she would lose hand use over time by continuing to use it in the manner (forcing early arthritis) By the time my kiddo was in 5th grade, she was sent to work hard on learning a new grip. When given the choice to use a new grip or to use her ring splints, she focused her attention on the new grip and she actually mastered it. I was incredibly skeptical, I didn't think she could do it.  She showed me otherwise, to our delight.
So, while she still hyper extends, her new grip is MUCH better and she is not wearing the ring splints at this time. I do want to share what we used, in the even that this information is helpful.

To begin with, the OT department at our local University custom made her these plastic ring splints. They were hard, and uncomfortable and they appeared to cut her blood flow as her fingers were always quite red/purple. She didn't like to wear them, and I can't say that I blamed her for that. Also, she was probably too young to work well with a product like this as she fought to bend against it instead of working with it. I would call that initial set a failure for our needs. The OT who fitted her for these plastic ring splints then went on to measure her for the silver ring splints, which were much more comfortable! She received a set that fit her well, though they still caused her pain when worn for a school day.

Eventually, she stopped wearing the ring splints and we tried different things.  In 6th grade she tried the silver ring splints again, but this is when she had transformed her grip, so she was doing much better without the splints than she had, previously. The people at Silver Ring Splints Company were very helpful with the OT who helped us.  This OT had never ordered them before, so he walked through a video conference to size her.  Unfortunately, he did size her a bit too small and they are not a good fit, nor are they returnable. The type that was identified as the most helpful for her were the

swan neck for finger tips and the MCP splint with bracelet for the thumbs. Because theses really were not a fabulous fit and because she was old enough to focus on her grip and make progress, we don't require her to use these at this time. Our insurance did help cover part of the costs of these splints.  Also, she had worse issues to attend to with her knees and shoulders throughout these years, so the splints ranked lower in importance when we weighed out all areas needed attention.
My opinion is that the Silver Ring Splint (click here)  products are really wonderful and they would be a great help to an adult, or teenager who is willing to work with them (or even a child who is ready to work with them).  It is essential to have them fitted properly, so make sure that your OT knows what he/she is doing and double check by following the advice on the company site.  If you want to try for insurance, you will likely have to pay up front and then submit yourself. I found it helpful to get codes and insurance papers before I met with OT so he could fill in what info he/she was required, and then I sent along a script from the Doctor, just in case.
These are expensive and there are other companies that make like products, though I cannot attest to the quality.  If you want to compare options, you can also check out Zomile (click here) , and Etsy even has some limited options (Etsty click here).
For my own child, I think the  Silver Rings Splints are likely a product she will want to come back to when she is older. The company makes a functional product that is also quite pretty and it looks more like jewelry than support.
I hope you find this information helpful! Please share if you have other vendors you like.

Orthotic shoes for women

From early on, good footwear has been a necessity in our household, and with the rolling in you see with the laxity, low muscle tone, and flat foot combination, a custom orthotic is key, as well. We get custom orthotic inserts made from a local prosthetic group, and they do a fantastic job. Normally, we add these to stable, high quality gym shoes with good arch support and stability. Some shoes we have used include Saucony shoes that offer support for over pronation, like the Stable shoe pictured and linked here. 

We have also used Asic line of shoes geared at over pronation, linked here.  Both of these companies offer search criteria by pronation issue on their main sites, which makes it easy to find out which shoe model you may want, then you can go shopping. We have been able to fit custom inserts into both these brands. New Balance also offers good options for stability.

While shopping for  gym shoes is not too difficult, shopping for sandals and dress shoes is much more trying! We have found that Clarke's, Jambu, Ecco brands all offer a few shoes here and there that can be utilized with inserts, but many do not. For such situations, a company called Foot Levelers can be useful.

My daughter was fitted for a pair of these Chaos sandals with custom orthotic insert. Because she is a younger person, the Keen and Chaos shoes run wide for her, but this sandal is somewhat adjustable (the top can be snugged tighter), which works for minimal use when going to the pool or beach. The company also offers up dress shoe options as well as slippers and a hiking boot. We were fitted for these by a local chiropractor, and I was skeptical about the orthotic being as good as the ones we buy from the prosthetic group. While the orthotic was smaller and less stable, it was formed nicely for her and it is a very good solution for someone with her specific situation. She can utilize these for the rare times of being at the pool, the beach, or she can try out a dress shoe for more formal occasions. The cost with the shoe was comparable to the custom orthotic alone at the local prosthetic group, and my insurance did pay a portion. I have been told that not all insurance companies will cover the cost of custom orthotics, however. Click here to see the different options available at Foot Levelers. You will need a professional to fit you for these custom orthotic shoe combinations.

Recently, I read a review on the Vionic Orthoheal sandals. Click here to view. These are made with a higher arch, providing more stability than the average sandal. I don't see how you could utilize an orthotic in their shoes, but their process is supposed to help take that step out of the equation for people who need more support from over pronation. It is not likely we will go this route, we may try out their dress flat at some point in time to see if it is a viable option for dress up occasions.

Finally, I have found that a local high end department store carries the widest selection of women's dress shoes that will accept an orthotic.  The store is called VonMaur (Click here for that link) , and they do have an online web presence with free shipping and very good customer service. If you have the option of going to a retail VonMaur to try out their shoes with your custom orthotic, you may find some wonderful (though not cheap) options for specialty situations such as formal occasions, uniform needs, or other. I have found the staff to be hit and miss in knowing which shoes work with orthotics, so I just look through them and find them on my own, most times. However, a staff member did point out a pair of sandals that had a removable sole that I would never have guessed was removable, so it is good to ask them, initially.

Shopping for shoes can be an exhausting and frustrating process when you require special support for Ehlers Danlos Syndrome or other custom orthotic needs. Luckily, manufacturers are improving our options and with a bit of luck, we can all find what we need without breaking the bank.

Next, I will post some additional photos of the types of shoes we have found useful with custom orthotics.

 First is an Asics brand shoe designed with extra support for over pronation and flat feet. We put the custom orthotic in (as pictured) in place of the liner that comes with the shoe.  This is the best for my daughter. She does need to buy these in a slightly larger size and width to accomodate her insert, but they are fantastic for comfort and support.

 To the right is a Mary Jane style that has an easily removable insert.  We were able to place the orthotic in this shoe, but it was a tight fit from top to bottom.  This works for those with a narrow foot, but it would limit the number of people who could fit a custom orthotic in the shoe. One thing I notice about this shoe is that it has more inside arch support than any other shoe I have tried, but the support for over pronation is not there, and requires awareness for those who struggle.

 To the left is a view of the second Ecco brand shoe insert. It is easily removed, though my daughter opted to wear this insert instead of her orthotic for a choir event. These look nice, and they are comfortable. Like the Ecco shoe above, these have nice built in arch support, but they lack a wide front base for over pronation support.  Granted, they are far better than the marjority of "dress" shoes for that need, but still, a custom orthotic may be required, depending on the individual.

Finally, the red shoe below is a Jambu sandal. These are built low and wide, which helps with over pronation. They lack support, but they are a nice option as a sandal replacement in summer. We were able to purchase and then remove the two liners in the shoe.  The second liner was glued down, so we had to commit to this in order to try it.  You can see the cream colored top liner and a thin black liner below it. Those both came out, making room for the custom orthotic. In order to fit the orthotic, my daughter went a size larger, but this worked nicely for her during summer. Still, it was not a quality shoe for long term walking, but a great option for occasions where a gym shoe didn't quite work.

As we try different shoes with inserts, over the years, I will add more photos.

S3 Brace

Image picture from Alignmed site, here.
One of the surgeons we consulted with prescribed the S3 vest brace for scapula support by Alignmed. We ordered this in the smallest size at the time. It turned out to be too big to function properly for my kiddo, so we don't know if it would be of help or not. While the waist area fits fine, and height is probably right, her width is too narrow for the support to hit where she needs it.  We have it on standby for when she is older. In the meantime, we are looking at a customized option from a local prosthetic maker, and I will post more when we have it finalized.

Joint Hypermobility Handbook - a must have primer

Dr. Tinkle is an expert on Ehlers Danlos Syndrome and a blessing to the many patients who found answers with him when they couldn't find answers elsewhere.  His book, Joint Hypermobility Handbook, is a must have for anyone with EDS Hypermobility. It is a wonderful and eye opening overview.
Now, if he would write a more expansive and detailed sequel, I would be the first in line for a copy!
Image of the book from Dr. Tinkle's publisher site, here.

Posterior Shoulder Immobilizer Donjoy Ultra Sling III

Pictured from the Donjoy website, here.


So, starting a few years ago, my kiddo began experiencing shoulder dislocation followed by shoulder instability. This was very scary for us in the beginning, and while we panic less as the years go by, we still struggle not to be enveloped by fear at times.

A product that has helped her, tremendously, during the most unstable time period is the Donjoy Ultra Sling III ER (we have an older model, but it looks the same). This helps her stay reduced long enough that she can get back to physical therapy and back to life. She had tried many slings and braces, but none worked at all until we put this on her.  Her dislocations are typically posterior (out the back) shoulder, and this sets her at the proper angle to keep it in.

Benefits:It's soft and adjustable, so it grows with her. It works great for posterior dislocations of the shoulder (better than anything else we have tried)
It can be worn to bed
Easy to pack and bring along (just in case)
All adjustable, so can even be switched to other arm if needed (though I still advise letting the professionals help you with that)

Disadvantage: It's confusing! you do need a professional to size this properly for you, then take a photo so you don't forget! If you have to readjust it, you will want to reference the photos.
You can't safely wear two at once while sleeping, due to straps (if bilateral support is needed)
Can pull on the shoulder, so wrapping with fabric or wearing a collared shirt can be helpful
Only came in adult sizes when we ordered, so not an option for smaller children
If bilateral shoulder instability is present, this can be too rough on the opposite supporting shoulder

3 years ago, just 4 weeks in this brace would have her stable and ready for physical therapy like a champ, but as she ages and her shoulders get worse, this isn't working as well as it used to. We are still using it at night during the ongoing daily instability, and around the clock during the worst of times, as advised by the medical team.

Massage musings

Her hands moved along the length of my shoulder, popping and cracking their way through.
“What is making the grinding noise when you do that?” I asked her.
“The knots in your muscles. Yours are very hostile”. She responds.
Hostile. My muscles? My connective tissue itself? My genes? This Body? Hostile.
“Your worries and stress are all being held right in here”. She moves her hand lightly along the area where I can’t even remember relaxation. The tightness that holds my posture and strength and possibly even my resolve. That is where her hand circles.
My worries. I avert my eyes and think “Please don’t cry!” I’m always wound tight and crying is easy to come by on any given day these past 13 years, but I don’t want to cry here and feel the fool. My worries and stress…my mind jumps to an image of my daughter, in her immobilizer. Her shoulder unable to stay in it’s socket. Her body rejecting it’s basic design. Hostile. My genes passed on to her. My worries. My resolve not to break down and cry.
“How’s your daughter?” She asks. This young woman sees right through me. I’m sure my eyes tell my fear and sorrow in the moment before I can steady them with a cover.
“She’s in the immobilizer again. Back to the doctor tomorrow. She can’t seem to keep that shoulder in it’s socket. Hopefully they have something new to try”
“Oh. Poor girl.”
Yes, that. As the masseuse moves her hands across my shoulders, down my arms, back over the shoulders and down the spine, I feel new awakenings of pain with each area she touches. So many muscles holding tight to worries of their own. I didn’t even know they were hurting like that. Somehow I managed to overlook the individual pains and accept the overall pain in my neck and head that is almost always present. I assume this connective tissue disorder is to blame, but so what. My daughter has it so much worse.
I imagine how her body would respond to this massage. Her shoulders would certainly pop out, then suck back in, leaving that hollow space and hollow feeling for a moment, followed by a jolt of sharp pain. Her fingers, her knees, her jaw…No. No massages for her.
If I have overlooked pains and worries camping around my muscles throughout my body, they are insignificant to the non stop inflammation and pain my first born lives with. It’s unlikely she has ever lived without pain, so she probably doesn’t realize how bad it is, but she knows it is there. Fatigue grabs onto her during regular activities and it steals her away bit by bit. First with a turn of the foot, then a limp. A knee that spins inward, a hip that jostles and slags. Her joy fades as she trudges on and soon, hopefully, she can stop. Rest. Ice. Medicate. It hurts. It always hurts. And why? The genes. The connective tissue disorder that I passed on to her without realizing what I had done. Certainly some of those worries and stress are born of guilt and of sorrow.
“Finished” says the masseuse. She smiles and glides from the room, ready to see the next client. I get up, feel each newly awakened ache and swim in a heated pool of grief for my girl. I put on my shoes and go home.