DAD info Multiple Sclerosis

[3DisneyNUTS]

Ok a while back I posted a reply to a thread explaining my dad has developed problems with his left side. He was losing strength and it affected his ability to walk. He fell alot. Well unfortunately yesterday he was diagnosed with MS. So after talking with him about it he said "Well I guess WDW is out for good now." He left our Sept trip early because he couldn't handle the walking and was embarrassed by using the ECV/wheelchair.

I am thinking about talking to my sister and arranging a trip to either Hilton Head or Vero Beach. This way he can experience the magic and still see his grandson have fun.

Here is my question. How to I get my dad to see the evc or wheelchair is no big deal? He is so caught up in how it "looks" that he cannot fully enjoy himself if he uses one. I would definitely love to go to WDW again with him during a slow season and let him see that WDW is really accessible and enjoyable anyway.

I know the way to "break him in" may be to start with the HH or VB trip and let him lounge by the pool or hang out in/around the resort. But I really want to share a world trip with him.

 

[Cheshire Figment]

I think that there may be a few ways to work on him.

One is to make him feel guilty. If he comes along and does not use an ECV it will slow down the entire group and "damage" the vacation; his not coming will also damage the vacation.

Next is to go with him to a large grocery store or other store that has "loaner" ECVs so he can see what it is like to use them. Be sure to point out hat the rentals (especially the off-site ones) are much more maneuverable than the store ones -- he has probably seen them in use in the parks.

Another is to make him feel guilty. Having an ECV is no worse than having a cane. His family, or others who know him, will understand his needs. Does he really have any reason to care what people who don't know him think?

Go through this forum. Look at some of the threads having to deal with mobility problems and print some of them out for him.

I hope these work.

 

[3DisneyNUTS]

Thanks I am probably gonna try the guilt thing since I know he wants to be included BUT he doesn't want to be a burden. His pride has always meant alot to him and part of that was why he didn't get this taken care of earlier. He figured it was nothing. So he ignored it. UGH!

 

[SueM in MN]

He's not unusual. People ignore things that they aren't ready to face. A lot of times, they know (or are pretty sure) what the diagnosis is for a long time before they actually have it. A lot of times people are looking at the worst case scenario and (especially soon after a diagnosis), all they can think about is the theri life the way they knew it is over.
One of the "arguements" that I have heard used successfully for getting people to use an ecv or wheelchair is that it's a tool, similar to glasses. People who need vision correction don't usually think anything bad about wearing glasses. They look at the glasses as a tool that helps them see. A wheelchair or ecv is a similar tool, just for a different need and can help him to save energy for the fun things instead of using all his energy just to get around.

 

[Talking Hands]

It took me a long to accept I needed to use a wheelchair or a cane. What did it for me was one day at school when I fell in front of all of the Special Ed kids on the bus ramp. It wasn't the first fall but it was the most embarassing. Especially when the school's physical therapist got on me about it.
Last week I went to a Tupperware convention and decided not to take my wheelchair. Big mistake. By the end of the first night I was in pain and by the end of the convention I was miserable and exhausted. Ended up in bed for 2 days recovering.
Tell Dad that he has a choice of isolation without using an ECV or independance with one.
You can bet I will be taking my wheelchair to Disney next month and will be taking it to Tupperware Jubilee next year. I learned my lesson.

 

[dj2]

might not be a popular view, but here goes:

in my opinion, laying on guilt/pressure is not what your dad needs. he's got a lot to deal with right now--a new diagnosis of what is currently thought of as an incurable disease and a big uncertain future filled with unpleasant half images of what might or might not happen to him. he's got plenty to deal with, and there's no quick way through it.

no matter what you can say intellectually, there is a huge emotional component that will take time.

explain why you think the trip would be fun, tell him sue's example comparing the ecv to eyeglasses, even point out that the odds will be very slim that he'll meet someone he knows at wdw, but in my opinion, the last thing he needs right now is pressure. he's probably got plenty on his own. give him the time he needs. be there to support him, remembering that it also takes time to get used to being supported.

pixie dust for your whole family**********


dj

p.s. IMO from your post your dad's unwillingness to go on the vacation sounds more like embarrassment/uncomfortableness than depression, but keep an eye out. esp. if he's started any meds, depression can be a side effect.

 

[3DisneyNUTS]

Thanks. I agree I am not going to push a vaction for a while. He needs to get a routine down and get his medical care in a routine as well. He still has no idea what this will entail for him. Basically I will be goingt to stay with him throughout the year to see how he is doing. I have no idea what changes are in store for him as far as work and living alone etc. there are big changes afront of him. I am going to wait till it all gets into a rythym. That way I can make him take a vacation when everything settles.

 

[SueM in MN]

Originally posted by dj2
might not be a popular view, but here goes:

in my opinion, laying on guilt/pressure is not what your dad needs. he's got a lot to deal with right now--a new diagnosis of what is currently thought of as an incurable disease and a big uncertain future filled with unpleasant half images of what might or might not happen to him. he's got plenty to deal with, and there's no quick way through it.

no matter what you can say intellectually, there is a huge emotional component that will take time.

explain why you think the trip would be fun, tell him sue's example comparing the ecv to eyeglasses, even point out that the odds will be very slim that he'll meet someone he knows at wdw, but in my opinion, the last thing he needs right now is pressure. he's probably got plenty on his own. give him the time he needs. be there to support him, remembering that it also takes time to get used to being supported.

pixie dust for your whole family**********


dj

p.s. IMO from your post your dad's unwillingness to go on the vacation sounds more like embarrassment/uncomfortableness than depression, but keep an eye out. esp. if he's started any meds, depression can be a side effect.

Actually, I agree with everything you wrote. But, at the time I wrote, I had very limited time (lunch time) and couldn't think of a way to say it.
What's the old saying - you get a lot more bees with honey than with vinegar. And waht he needs right now, is probably some major honey.

 

[GeekChic]

yes, i echo the comments of the others, it's a better idea not to use guilt on him. he'll just feel worse about being sick.

for men especially i think that it's a matter of 'macho' and not wanting to have to use an ECV or a chair. I know, my dad had a massive stroke 3 years ago and would likely find touring the parks much more fun in an ECV, but he refuses, and I mean refuses to use one. So we go at a slower pace, which works for me being easily tired anyway, but i know if he would use one i'd feel a lot more relaxed overall.

he just got dx'd, he is likely still in shock and it will take awhile for him to adjust to the idea that there 'really' is a medical reason for his symptoms.

tell him how much you love him, how much you don't want him or the kids to miss out on chances to vacation, and tell him no, dad, disney is most definitely NOT out, look at the thousands of people who use ECV's to get around so they can go...he may feel self conscious but there is truly no need. remind him that a lot of us other MS-ers have taken the stand not to let the disease keep us from a place we really love, WDW, and we do what we have to do to get around!

hopefully he will see things more clearly after he gets a chance to adjust a little. as was mentioned before, watch him like a hawk for signs of depression because it seems to be part and parcel of MS and other chronic illnesses.

good luck!
geek