Still trying to accept that I have to have a ECV...

[KPeveler]

Wow. Thank you for this thread. I read it all. My Dad rwas recently ill, and now will be need an oxygen tank for most part sof a day however long he lives (which I hope is a really long time!) . He can walk slowly for a few minutes at a time, but the days of him walking WDW for hours is gone. He is having a really hard time with this. He was trying to tell me he thought, if he rested lots, that he could manage without an ECV. "Where to put your tank, Dad?", I asked. "The stroller" was his reply. That is a man having a difficult time accepting his new reality. I want to scream "Your lungs are garbage now!" but I don't. I simply told him what was what and he sort of rolled his eyes. Thank you for helping me understand. I also had no idea that people commented about ECVs riders. That's crazy. That's evil. I never realized. I guess I will paint Dad's tank a nice orange color, and maybe the tubes in his nostril will keep the idiots at bay.

Just as a note, you can often get an oxygen tank holder put on an off-site scooter rental - just inquire at the rental companies, and one should be able to help you - better than balancing it in the stroller or on his lap!

 

[MarriedToAPrince]

I know this thread is old but I wanted to say that I 100% relate to the OP. We are going to WDW in 3 months I have to rent an ECV or I won't be able to go. I was in a car accident almost 3 years ago and fractured my spine. We didn't know about the injury until 3 months later so it healed off and is pinching nerves. I also sustained a neck injury which has caused problems with both arms. On top of that I have arthritis in my knees and lower back. All of this happened 5 weeks after I had my daughter.

It has been hard and I worry about the looks I will get, the remarks I will hear, etc. I talked to my husband and he already said if anyone trys to make a remark he will put them in their place and to remember that if I don't use a ECV I will never be able to go. Then I wouldn't get to see my DD experiencing WDW for the first time. So....I will use one and try to ignore everyone else focus on my DD, because after all she is the only one who matters.

 

[Cheshire Figment]

I talked to my husband and he already said if anyone trys to make a remark he will put them in their place and to remember that if I don't use a ECV I will never be able to go.

Just warn you husband that if he tries to put others in their place he should do it with sweetness. No violence, threats or undisneylike language. This could get him in trouble. Or something like: "maybe you can be in an automobile accident also and have to spend the rest of your live in a wheelchair too".

 

[MandyMaloo]

Just wanted to jump in and say "thank you" for bumping this thread up again. I am experiencing the same feelings. I'm just coming to terms with needing to use a cane at 25 years old. It's so ahrd for me to imagine having a Disney experience that wont be like the hundreds I've had before where I've literally skipped down Main Street USA. It's not that I think the ECV is wrong, and I completely understand that their purpose is to help enhance the experiences of guests (like me) who wouldn't normally be able to get around on their own. I guess I'm just looking at it as a sign of defeat right now. I've really deteriorated so much in the past 2 years that it's almost like it's happening to someone else. I feel like my body is trapping me inside. I know that there's no choice in the matter other than to get an EVC or endure horrible pain, but it still concerns me that my battle may be made worse by guests who just don't understand how devistating it is (mentally and physically) to have to arrive at the decision to use one.

I cannot thank the DISabilities community enough for being so incredibly supportive and helpful. You've all really helped eliminate some of my fears, and it's great being able to connect with others who share a common love of Disney, but also have a unique perspective of the magic it holds. Thank you, thank you, thank you!!!

 

[bouncy54]

Just wanted to jump in and say "thank you" for bumping this thread up again. I am experiencing the same feelings. I'm just coming to terms with needing to use a cane at 25 years old. It's so ahrd for me to imagine having a Disney experience that wont be like the hundreds I've had before where I've literally skipped down Main Street USA. It's not that I think the ECV is wrong, and I completely understand that their purpose is to help enhance the experiences of guests (like me) who wouldn't normally be able to get around on their own. I guess I'm just looking at it as a sign of defeat right now. I've really deteriorated so much in the past 2 years that it's almost like it's happening to someone else. I feel like my body is trapping me inside. I know that there's no choice in the matter other than to get an EVC or endure horrible pain, but it still concerns me that my battle may be made worse by guests who just don't understand how devistating it is (mentally and physically) to have to arrive at the decision to use one.

I cannot thank the DISabilities community enough for being so incredibly supportive and helpful. You've all really helped eliminate some of my fears, and it's great being able to connect with others who share a common love of Disney, but also have a unique perspective of the magic it holds. Thank you, thank you, thank you!!!

The past 2 years have certainly taken it's toll on some of us. Seems like one day I was working at a job I loved, climbing stairs to my office, able to lift heavy bins..etc, then whamo.. I was laid off. About the same time I began having some serious health issues. I believe there's a reason for everything and have come to accept that someone bigger than I knew what was coming down the road.

I look at the availability of ECVs as a blessing. What wonderful technological times we live in to be able to have such freedom to go and do whatever I want without pain.

 

[PajamaBagStitch]

Just as a note, you can often get an oxygen tank holder put on an off-site scooter rental - just inquire at the rental companies, and one should be able to help you - better than balancing it in the stroller or on his lap!

Yes, that is what I am planning, thanks to this site! He really told me he thought he could walk the whole time, and just put his tank in the stroller basket as tried to walk for more than a few minutes at a time....I see now that this is a whole new world, and I have to help him see it's not the end of the world. He can do what he loves, but in a different way.

I am blown away by this board. What an amazing resource...and as I read, I see it goes well beyond Disney.

I did tell my Dad that if he feels well, he can walk, it's fine. That seemed to help him imagine it. I don't know if he thought I was going to duct tape him to the unit...

 

[JenniBugInPink]

The past 2 years have certainly taken it's toll on some of us. Seems like one day I was working at a job I loved, climbing stairs to my office, able to lift heavy bins..etc, then whamo.. I was laid off. About the same time I began having some serious health issues. I believe there's a reason for everything and have come to accept that someone bigger than I knew what was coming down the road.

I look at the availability of ECVs as a blessing. What wonderful technological times we live in to be able to have such freedom to go and do whatever I want without pain.

Boy, howdy, can I relate to your post. My story is quite similar, though I had been having medical problems for some time (back pain, foot pain, and a connective tissue issue foremost among the things that really interfered with my mobility) prior to losing my job last September after almost 16 years of working at the same place. Broke my heart! I loved what I did, and it was my whole identity. I had no warning - a new company bought us 2 years prior, and when they 'laid me off', it was the beginning of getting rid of about half of my department, starting with the highest paid folks first.

...I am experiencing the same feelings. I'm just coming to terms with needing to use a cane at 25 years old...It's not that I think the ECV is wrong, and I completely understand that their purpose is to help enhance the experiences of guests (like me) who wouldn't normally be able to get around on their own. I guess I'm just looking at it as a sign of defeat right now. I've really deteriorated so much in the past 2 years that it's almost like it's happening to someone else. I feel like my body is trapping me inside. I know that there's no choice in the matter other than to get an EVC or endure horrible pain, but it still concerns me that my battle may be made worse by guests who just don't understand how devistating it is (mentally and physically) to have to arrive at the decision to use one.

I'm twice your age, but I hated having to use an ECV just as badly about 6 years ago when I had to do it for the first time. Right now I'm doing so badly that I'm having to use one at the grocery store, Lowe's (big hardware-type store), anywhere that I'll have to walk for any substantial distance or stand for any significant amount of time. It's aggravating, but I am grateful that they exist. Without them, I would be stuck using my grandmother's old wheelchair, and it weighs so much, I don't know how I'd get it in and out of the truck.

 

[bouncy54]

I've been using an ECV at the stores for the past year. I tried to do a bit of shopping yesterday by just leaning on a cart. I wanted to check to see if I had gotten any better or worse. Got it done, but boy was I ever slo-o-ow at it. If I take teeny tiny steps I can endure the pain, but if I walk at a normal pace, the pain in my legs and back has me in tears. The stress from the pain gives me angina and arrhythmia which makes me short winded and I end up popping Nitro to open up those blood vessels. So I guess it's back to the scooter for my next shopping excursion.

This Degenerative Disk Disease really took me by surprise but I guess it shouldn't have. My mother had the same thing. I remember her saying her back ached all the time, but I thought it was connected with the disease that ended up taking her life.

So, all I can do is accept my limitations with a smile. We all have our crosses to bear... I just didn't expect to have to start bearing mine until I was a bit older.

 

[peemagg]

I have been using an ECV for major outings (Disney and other places like this) and for school for the last 2 years. I use a cane most of the time for walking any distances, but my feet are getting worse and the cane just isn't cutting it on my real bad days. I decided today that I needed forearm crutches with the hope that they will allow me to walk farther and longer than the cane does with less pain. I now have a set of these crutches. Trial walking has shown less pain. We will see how it goes later on longer walks.

I say if you need a device go ahead and get it or use it. If it gives you the freedom you need to have some semblance of your former life then use it. Forget what others might say. It is your life and you know what will make things easier for you.

 

[POOHsie]

I'm just coming to terms with needing to use a cane at 25 years old... It's not that I think the ECV is wrong, and I completely understand that their purpose is to help enhance the experiences of guests (like me) who wouldn't normally be able to get around on their own... I know that there's no choice in the matter other than to get an EVC or endure horrible pain, but it still concerns me that my battle may be made worse by guests who just don't understand how devastating it is (mentally and physically) to have to arrive at the decision to use one.

The part I bolded, I wanted to comment on. I am as insecure and self-conscious as a person can be, and I always have been. HOWEVER, doctors diagnosed my condition as devastating. Social Security declared me 100% disabled without any problem. SO, should I possibly hear unkind comments from the able-bodied, I don't think about it for a minute, because I know my circumstances, and they don't, and anyways, I don't owe them an explanation.

Another way to look at those who make unkind comments is to relate it to something else. My sister has a dog that barks at everyone and everything. Arf, Arf, Arf, Arf, Arf. We all know this is ridiculous behavior and we don't pay attention to the dog noise. This is how you should see these people and their ignorant comments: Arf, Arf, Arf, Arf, Arf. Just like a dumb, stupid dog!!

Practice putting a huge grin on your face and saying, "Have a Magical Day!"

 

[Holoshed]

The part I bolded, I wanted to comment on. I am as insecure and self-conscious as a person can be, and I always have been. HOWEVER, doctors diagnosed my condition as devastating. Social Security declared me 100% disabled without any problem. SO, should I possibly hear unkind comments from the able-bodied, I don't think about it for a minute, because I know my circumstances, and they don't, and anyways, I don't owe them an explanation.

Another way to look at those who make unkind comments is to relate it to something else. My sister has a dog that barks at everyone and everything. Arf, Arf, Arf, Arf, Arf. We all know this is ridiculous behavior and we don't pay attention to the dog noise. This is how you should see these people and their ignorant comments: Arf, Arf, Arf, Arf, Arf. Just like a dumb, stupid dog!!

Practice putting a huge grin on your face and saying, "Have a Magical Day!"

The main thing is people now in America and even other parts of the world maybe, tend to think if I dont see it, it does not exist. This goes for injuries or disabilities. I and even some others here I am sure, have at one point thought "they dont look like they need THAT much help" yet I am the one using a scooter anywhere I can. Does it make it right for me or anyone else to feel this way? Heck no! But it will happen and the BEST way to combat it is to just be NICE to them and somehow it magically changes their view! They somehow get a glimmer of light in their eye and its all clear!

For those who know of my writing style by now from my posts, I like to type and will usually write something long so here is my best "outside disney" story of this. The good news is I cannot say I ever NEEDED to explain my issues inside Disney to anyone but a questioning cast member because most people are too consumed to look at you.

Go back last year when I had tickets to a live taping of Big Brother on the CBS lot in Burbank, Ca. This setup for some odd reason does not make it easy on handicapped people that I found in my communication with their "audience coordinators" because they did not have something prearranged and the security guards seemed clueless. Sorry to say the staff and coordinators for Two and a Half Men were more on the ball on this because they actually set you up as "VIP" so you have a whole different check in and wait arrangement before the taping.

Going back to the waiting line at CBS, I check in with the security guard handling everything at first and explain that I am unable to wait in the "standing only" line that is setup and he explains I can wait off to the side where there are benches (which are out of view from everyone else). Fast forward to time for the figuring out "who gets in" lineup and we move forward and a new security guard is working the queue and he says he never told us to wait and he doesnt know what to do. Someone else tells us to wait at the spot the line was when we got there (two hours early which we thought would help them). We stand there and of course EVERYONE but one person seems to be ok with the whole thing till one woman tries to be the ring leader in evacuating me from her precious general area she waited one odd hour to be in. I hear her start to tell other people she will talk to us and then talk to the management and get us out of the line because we are "breakers" and are doing something illegal (dont ask me how its illegal).

I nicely turned to her and just talked about the weather and eased into the physical reasons of why I was in the position I was in and how the security guards changed shifts so they were not aware of what happened and something in that woman changed to a point where she was TAKING UP for us if anyone else asked what happened. The person who could have been a sworn enemy if handled wrong ended up being a protector in a way.

In short, if someone tries to say anything, even if not to your face, just talk to them, act like its no big deal and you just love the world and want to be their friend. It usually makes them forget the problems they ever had with you or anyone else. They are usually just stressed out from their kids yelling or someone else stepping on their toes 50 times per line and need to vend some way or another.

Hope some of that long story makes sense... lol

 

[POOHsie]

In short, if someone tries to say anything, even if not to your face, just talk to them, act like its no big deal and you just love the world and want to be their friend. It usually makes them forget the problems they ever had with you or anyone else. They are usually just stressed out from their kids yelling or someone else stepping on their toes 50 times per line and need to vend some way or another.

I am all for being flexible, and I know that people who ridicule me, would see me in a whole different way, under different circumstances. When I wrote my comment, I was thinking about those able-bodied people waiting for the Disney bus, or in a ride line, or who post nasty comments on these forums, who intentionally say something mean from a safe distance. In those circumstances, in front of their buddies they are showing off for, I don't believe they would relinquish their attitude.

The place where that works is one-on-one, like what you wrote about your encounter with the lady, where you both had the place and the time to talk together.

One place I used your technique to help me was on a cruise with my ecv. Went with DD and new husband, and husband's relatives. So really, I was solo alot. I could not, for the life of me, get on a cruise ship elevator. There were elevator banks of six cars, 3 on a side. Every time I tried to get on, a mob of people raced around me before I could even start to move, and the car would be full. It really had me frustrated to tears as 20-30 minutes would go by every time I needed an elevator. And on a cruise ship, I need an elevator alot. I learned that by striking up a friendly conversation with someone while waiting for the next car, sometimes a person became my "aide," who cleared a path for me onto the car. So yes, I will adjust to my circumstances and lay on the friendliness.

But there have been times when an able-bodied person went on a rant, and kindly as I could be to engage them, they ignored me and went on ranting. It takes all kinds to make up the world. That is why at all times, I present a big smile and think (or say), "Have a Magical Day."

 

[mgp]

My wife and I are planning a dw trip. We decided to rent a scooter because I am a diabetic whose stamina is lacking. But I am not handicapped yet. I have troubled feelings because I feel like I shoould be able to walk and not make things more crowded for ones who really need the scooters or chairs. Yet, I know that if I take to much insulin I'm gonna give out quick. So I'm accepting the fact that we will need one. I also struggle with the descision about which one to get. I dont want to call unnessary attention to myself, but I really like the 'Dream' scooter. Thing is I dont need such a large scooter, but since i'm gonna have to get one, I ask myself and my wife, why not the fun one? lol

 

[KPeveler]

My wife and I are planning a dw trip. We decided to rent a scooter because I am a diabetic whose stamina is lacking. But I am not handicapped yet. I have troubled feelings because I feel like I shoould be able to walk and not make things more crowded for ones who really need the scooters or chairs. Yet, I know that if I take to much insulin I'm gonna give out quick. So I'm accepting the fact that we will need one. I also struggle with the descision about which one to get. I dont want to call unnessary attention to myself, but I really like the 'Dream' scooter. Thing is I dont need such a large scooter, but since i'm gonna have to get one, I ask myself and my wife, why not the fun one? lol

The Dream may look cool but you should know it is difficult to maneuver, especially through crowds, and VERY difficult to get on buses. Some Dream scooters (it has been reported) have not been modified and therefore will not fit on the bus lifts.

Most people have said that unless you are an experienced scooter driver, you should not rent a Dream scooter. Also, most people say that unless you need the increased weight capacity, it is just too big to be practical...

 

[ShhhQ]

So I'm accepting the fact that we will need one. I also struggle with the descision about which one to get. I dont want to call unnessary attention to myself, but I really like the 'Dream' scooter. Thing is I dont need such a large scooter, but since i'm gonna have to get one, I ask myself and my wife, why not the fun one? lol

I felt the same way, I really liked the look of the Dream scooter and was planning on renting it. However, when the contreversy (sp?) over whether or not it will go on the buses came up, I started looking elsewhere. I am instead renting from Apple Scooters... their prices seem to be a tad lower than others and include ins. It also has a captains chair which makes it a little more fun than a normal scooter... just not as cool looking as the Dream!

 

[eelore]

I felt the same way, I really liked the look of the Dream scooter and was planning on renting it. However, when the contreversy (sp?) over whether or not it will go on the buses came up, I started looking elsewhere. I am instead renting from Apple Scooters... their prices seem to be a tad lower than others and include ins. It also has a captains chair which makes it a little more fun than a normal scooter... just not as cool looking as the Dream!

I love the dream and am renting it again this year for the second time. I had no problems whatsoever getting on any bus including the lift buses. I didn't have any problems getting through crowds either. As a matter of fact, I found it much easier than a regualr rental! Just my experience with the dream. I know everyone has different taste but I prefer it over other scooters and Ive rented quiet a few of them over the years

 

[eelore]

I'm sure others that don't have an obvious disability or can do normal activities for a couple of hours before feeling tired or being in pain must feel funny about having to be in a wheelchair or ECV.

I suppose I'll get over it and make sure my 3 boys have a great time, DS10, DS6, and DS2.

Thanks for listening,

Anita

I have an orthopedic disability with my ankle but just wear a small brace that isnt very noticable and I struggle with fibromyalgia and pain so I understand how you feel. Ive gotten some looks from people but Ive learned to just ignore them and not allow it to affect my Disney magic! Its one of the hardest things to have to admit limitations so be proud of yourself that you are admiting that you need a scooter rather than trying to overdo and have to miss out on the fun because youre in too much pain to enjoy yourself and your family. Ignore the looks and just have fun! You deserve it!
I know its hard to deal with needing one and it took me years to accept my disability. Its like going through a grieving process because it is a huge loss when you have limitations. Allow yourself to go through that process. Its all a part of dealing with it all. it gets better with time.

Just a note in dealing with the stares and looks... last year we had a family reunion cruise and on the last day we went to eat lunch before getting off the ship. It was crowded so I didnt have room to park my scooter so I just drove it to a table and people helped to move chairs so I could get through. After getting to the table I thought it would be easier to get up and walk to the buffet rather than having to go back through all the moving stuff so I got up and walked away. The people who had helped me all gave me dirty looks! I guess they were mad because theyd helped someone they thought didnt need help. When my cousin saw this she jumped up and yelled, "Its a Miracle!!! She WALKS!!" LOLOLOL
It made most of the people laugh. It was funny the way she said it. Maybe they wont be so quick to judge people next time though!!

Enjoy your trip and your family and try not to let others bother you with looks. You and your family know the truth and thats what matters. Just remember its a part of taking care of you so you will be able to do more and have more time to enjoy your family without being in so much pain

 

[SPENCER AA]

My wife and i both use scootors sense 2008. It was not as much that we had to, the scootors just made it a lot easyer to see all the parks and keep up with the kids and grandkids. My wife and i are both 60 years old and have some problems. We both have found that there is so much to take in at the different disney world parks and when riding your able to capture all of it. And when you see other people looking at you in your ecv, most of these people are not thinking ( disability ) they are thinking "wow" that sure beats walking. Spencer

 

[huckster]

Reading thru all the posts sure makes me feel better it si so hard to accept being disabled, i thank every one who took the time to post, for people like me who are on the fence i finally put my ressy in for my scooter after much debate from Walker thanks to reviews , hoping i can manuver it ok on and off busses, and thru the crowds, i know in my heart i would not last more than 2 hours tops in the parks , i used to be comando grandma.. now i will be three wheeled grandma
but i will be the grandma that can keep up and much less pain.cant wait for sept

 

[snyderla]

I'm so glad I found this thread! I, too, have RA. I struggled for years before I decided this trip I am bringing an ecv. It was trying one out at Wal-Mart that led me to that decision. I hadn't been able to shop for many months, finally my DH convinced me to go in to the store with him and just try the ecv. I glad he talked me into it. Now he won't have to push me in the wheelchair!
I also had one of those experiences at WDW where some woman yelled at me for using the handicap stall at SSR. For several reasons, personal to me, I needed to use that stall. As I came out, she started yelling at me that she needed it and I didn't, I calmly told her I had as much right to use it as she did, and my reasons were my business. It still bothers me. I don't understand how some people can think it's ok to say whatever they want to others. But I can't let that keep me from having a wonderful time at the most magical place on earth.