Touring the world with a prosthetic

[mansionterror]

Hello everyone. My DH was injured on the job recently (has a severe crush injury on his foot) and may end up with either a partial (from the heel bone) or full prosthetic (below the knee, ankle amp). We have plans to go to Disney the end of May and I hope we will still be able to go.

I am looking for tips/advice from anyone that has a prosthetic limb for touring Disney....dealing with questions/stares from people at the pool, ride restrictions, etc. My DH is pretty outgoing and will talk to anyone about anything so I think he will be able to handle it well but I want to give him some encouragement.

TIA

 

[blessedmom4]

I can't answer the question about prosthetic limbs; however, wanted to send some hugs, prayers and healing energy your way.


This definitely isn't the same; however, I wanted to give you some thoughts while you wait for a more knowledgeable person to answer. DD has had three open heart surgeries and two strokes. She has a slight limp on the right side and her right leg is both shorter and smaller than her left. She also wears a titanium leg brace on her right leg, just to the knee. In addition she has a PEG (feeding) tube , which protrudes from her tummy. Her chest and stomach are FULL of scars. She is now 7. She wears a bikini to the pool, tank tops which show her scars, a leotard in dance class which has her PEG poking through...If anyone asks her about it (usually it is a child who has the nerve to inquire), she calmly states "Oh this is my PEG" and may or may not give a description as to what a PEG is. (When she was very tiny she called it her PIG, because that is what she thought we were saying ) If they ask about her scars, she tells them she had open heart surgery. These are the type of answers she has always heard us matter-of-factly give and she is comfortable with her body. If your DH feels comfortable about his body, so will everyone around him. Will people stare? YES! Most are just wanting to show some support and they are curious.

I HTH as you wait for more people with experience to chime in. Have a MAGICAL time!

 

[bellarella]

Sorry you are dealing with this.

May might be ambitious to plan on going to Disney without the use of an ECV or wheelchair.

There are no ride restrictions that he would have to deal with, unless he is confined to a wheelchair or EVC during your stay.

Good luck to you both!!!

 

[mansionterror]

blessedmom4 - thank you so much for the thoughts and healing energy. He has already shown progress (healing wise) and we still do not know if amputation will be necessary. My husband has always been very outgoing and will talk to anyone, we have a DS (7) who we have been very open with thoughout the whole process. He has even seen his Dad's injuries. DH LOVES kids so I am sure he will be the type of person happy to talk to them about his foot. Your little girl is such an inspiration and I will be sure to show your post to my DH for encouragement.

bellarella - We have a great chair for him, right now he is on a walker as he still can't put any weight on the injured foot. The WC is light weight and easy for me to handle so we can always take it with us or I will rent an ECV for him. We are Disney vets and take a slow pace anyway. I think we will be so excited and thankful to go we will really just want to soak it all in. I will do whatever I need to do to make the trip easy for him. We had planned to fly although I am not sure how to take the chair on the plane?

He just wants to get back to "normal" as soon as possible.

 

[Barling]

Good luck to you and your husband. I hope he heals well and does not need the amputation surgery. I can't speak as well to leg amputations as my daughter is a hand amputee but I can tell you a bit about the staring and emotional impacts it can have.

My daughter was born missing her right hand and a small portion of her arm. She has been wearing a prosthesis since she was 3 months old but oftentimes goes without it as well. People WILL stare. The thing we try to remind her is that most people do not stare to be mean they just stare because they are curious. That doesn't always make things easier when you are 4 years old but it can help a bit. The easiest way to deal with it for us has been to be open to answering questions about it, try to ignore the stares when possible and only confront those that are being particularly rude or mean.

I'm sure your husband will handle things fine but it is always good to know there are other people out there just like you and to have people that you can talk with that are going through the same thing is a huge help. Good luck and enjoy Disney. We will be there for our second visit in April.

 

[mansionterror]

Barling,

Thank you so much for your information, it is nice to know that other people have had similar experiences and hear about them.

 

[LMC]

mansionterror: don't let him jump to amputation yet. My DH had acute compartment syndrome (crush injury) to his calf in Aug '09. He laid in the hospital with both sides of his leg open for 11 days. It usually only takes 3-5 for the swelling to go down. Needless to say, he now has tremendous nerve damage and pain. (And some rad skin grafts) We just found out about a neurostimulator that is fairly new for his type of injury that they hope will remove the RSD pain.
I don't know if your husband is still dealing with the initial healing or now the after effects but this could be an option if he is having RSD symptoms and has had ample time to heal. There are only a few places in the country you can have this done. DH is going to St Jude in Atlanta.

 

[mansionterror]

mansionterror: don't let him jump to amputation yet. My DH had acute compartment syndrome (crush injury) to his calf in Aug '09. He laid in the hospital with both sides of his leg open for 11 days. It usually only takes 3-5 for the swelling to go down. Needless to say, he now has tremendous nerve damage and pain. (And some rad skin grafts) We just found out about a neurostimulator that is fairly new for his type of injury that they hope will remove the RSD pain.
I don't know if your husband is still dealing with the initial healing or now the after effects but this could be an option if he is having RSD symptoms and has had ample time to heal. There are only a few places in the country you can have this done. DH is going to St Jude in Atlanta.

LMC - I am so sorry to hear about your husband and that he is still dealing with this several years later. My DH injury was on 01/10, he had surgery to repair the bones the day of the accident and spent 4 days in the hospital. We are just now able to change his dressing daily and he goes next week to have the stitches removed. He is still pretty swollen and the skin is still healing so we are still pretty early on and the doctor just wanted to give him all his options. We are no-where near decision time as the Doctor really wants to see what the skin is going to do. However my husband does not want to have to endure several more surgeries (Grafts or muscle flap transfers) to still have pain. Doc already said he would have pain the rest of his life. I guess right now we are still playing the wait and watch game. Keep me updated on this new treatment and your husband's progress. I hope it will give him some relief.

 

[blessedmom4]

LMC - I am so sorry to hear about your husband and that he is still dealing with this several years later. My DH injury was on 01/10, he had surgery to repair the bones the day of the accident and spent 4 days in the hospital. We are just now able to change his dressing daily and he goes next week to have the stitches removed. He is still pretty swollen and the skin is still healing so we are still pretty early on and the doctor just wanted to give him all his options. We are no-where near decision time as the Doctor really wants to see what the skin is going to do. However my husband does not want to have to endure several more surgeries (Grafts or muscle flap transfers) to still have pain. Doc already said he would have pain the rest of his life. I guess right now we are still playing the wait and watch game. Keep me updated on this new treatment and your husband's progress. I hope it will give him some relief.

Continuing to lift you all up. I know this is tough; however, your DH sounds like a positive type of person who will not let this slow him down.

Thank you for your kind words about Lisa, she truly IS amazing!

 

[LMC]

Well his injury is still very "fresh" so hopefully after his initial healing alot of his pain will subside. Hopefully the doctors are wrong and he won't have alot of pain or it may be a different pain than he is experiencing now. You also should watch for drop foot right now. They told us about it after 7 days in the hospital and it is irreversible. DH was getting it so I had to keep him in a orthotic boot to keep his achilles tendon stretched. Drop foot leads to amputation too. I don't know if your DH can wear any type of device like that or if he is any type of therapy yet to help prevent that but it is something you need to ask about if they have not brought it up.
I hope he begins to heal quickly and develops no infection. DH was off work for 3 months then PT for two months so hang in there!

 

[Tinker Bell Fan]

DH & I just got back from WDW. DH is an above the knee amputee (July 2010 - due to a blood clot & vascular issues) and has had a prosthetic since November. He's still learning how to walk with the prosthetic so he found it easier not to put the prosthetic on (and because it was really hot which would have made it even more uncomfortable).

We had an ECV for him (and a wheelchair too) and we endured many stares but we ignored them. Mostly the stares were from little kids. One little kid actually stood in front of DH's EVC and companded him to stop because he wanted to see that he really didn't have a leg. His parents were horrified - we thought it was kind of funny.

I hope for your DH's sake (and yours) that he will not an amputation. But if he does need one be aware that you might have to post pone your May trip. DH had his amputation in July and we were scheduled to go in October and we ended up canceling that trip and finally got to go a few weeks ago. It was well worth the wait - we both needed a get away and we celebrated our anniversary. But anyway...

We did find out that there were a couple of rides that he just couldn't go on (he can transfer fine but when the walkway or the ride was moving it made it difficult and he couldn't do it). So we did a lot of "sight seeing" and taking pictures this trip. Plus we're hoping to go in October - he really wants to go for the Halloween party at MK.

Thoughts & prayers are with you both!