Tips for Someone Newly Diagnosed with MS

[RainbowGlitterToots]

Hi Guys- we are 30 days out from a special trip with my three kids (all tweens/teens). I was just dxd with MS and wondering if anyone can offer any tips for managing symptoms (heat intolerance, fatigue, migraines) at the parks)
We are doing mnsshp on our first night, followed by 4 days of park hopping. Most of our fps are already set, and we did the add on three through club level. I’m just a little nervous that I won’t have the energy to keep up with my kids. DH won’t be able to make it as he has a work obligation. I am thankful to still be fully mobile. We haven’t told the kids yet, and I don’t want to shock them by suddenly using a scooter when they are used to me running from park to park. Tia

 

[gap2368]

First of all please tell your kids and tell them soon. They will find out and they are old enough to understand something is up. I would sit down and just have a talk with them answer any questions they have the best you can my guess is at Disney they wil notic thst yiu are not your normal running and this way if you do need to rest or rent an ECV you can. Also all the parks have first aid of you need to rest for a bit.

As fair as heat goes I find Columbia Omni freeze works wonder for me ( I have the long sleeve that I wear at Disney because I can not use sunscreen ) I also I got a nick fan off amazon that is amazing

 

[theluckyrabbit]

Make your health a priority! If you are not doing well, this trip is not going to go so well for you or for your family. If you need to rest, stop and rest. There are various ways to do this with your kids, so maybe you can plan ahead by looking on a map to know what your options will be in the areas where you'll be each day. Look for places with a/c: shops, CS locations for snacks and ice water (hydrate!), etc. Don't be afraid to ask for help if you need it. The better care you take of yourself, the better you will feel and the more energy you'll have for your family. And that will make the trip more fun for everyone.

 

[Lilsia]

I agree with the other posters about telling your kids, they will know something is not right. At the age that they are, they can easily go off and do some rides without you if you need to rest. Listen to your body and don't push yourself. Your kids will understand.

 

[Simba's Mom]

I agree with telling the kids, at least that you might need an ECV. I was so concerned about needing an ECV when I went with my DGDs. But kids are amazing. They didn't blink about the ECV-your kids just want Mom to be comfortable and happy.

 

[mamabunny]

Tell. Your. Kids.

Seriously.

And as far as an ECV goes, you should know this:

Your kids aren't going to care if you have an ECV as long as they get to go to Disney World, because kids are kids. They *will* take their cues from you - so if you just say "Hey, guess what! I'm going to use this cool scooter at Disney World, no big deal - it just means we can have *more* fun than if I try to walk!" and you are positive about it, and you don't make it into a Big Dramatic Deal, then they won't either. The kids, and your family, and the entire world will take their cues from *you*, and how you accept it.

The other thing you need to know is this: Your kids probably already know you are "sick" - but they don't know with what. They may be imagining the worst. You don't have to tell them all of the finer points of your disease or diagnosis, but give them some age-appropriate information. That alone will open the door for a discussion about why you will use the scooter at WDW, but might not need one at home for a long long time, if ever.

Tell them. Please...

 

[theluckyrabbit]

Have you used an ECV before? If not and if you can get the chance, go to Walmart or Target to try out a motorized cart. Practice driving in the aisles, with less and with more crowded conditions. Practice turning, backing up, braking, etc. The more confidence you have, the easier and less stressful your time in the parks will be -- which will be better for your health.

 

[RainbowGlitterToots]

Thank you for all of your responses. I’m currently hospitalized but my kids have no clue because they are away at camp. Just had an mri if my spine so that may give better insight as to what my odds are of doing this without an ecv. Mobility is only an issue due to exhaustion and heat intolerancd, but I think that I may be able to do it with breaks.
We will be telling the kids about my diagnosis this weekend. I’ll be home from the hospital a few hours before we have to pick them up from camp. I want to give them a day to settle in before telling them.
Also, is the skyliner open yet? If so, does it fit ecvs?

 

[geek+nerd]

Skyliner isn’t open yet, but it does accommodate wheelchairs and ECVs.

Please, please, please get an ECV. You’ve obviously been to Disney before and are familiar with the amount of walking. Just think about the walk to the bus after a long day in the parks and the bus lines following fireworks.

Your kids will be happy that you’re not in pain and clearly struggling (trust me, you won’t be able to hide it no matter how good your poker face is) and they will love to have a place to stick all their stuff

 

[gap2368]

Thank you for all of your responses. I’m currently hospitalized but my kids have no clue because they are away at camp. Just had an mri if my spine so that may give better insight as to what my odds are of doing this without an ecv. Mobility is only an issue due to exhaustion and heat intolerancd, but I think that I may be able to do it with breaks.
We will be telling the kids about my diagnosis this weekend. I’ll be home from the hospital a few hours before we have to pick them up from camp. I want to give them a day to settle in before telling them.
Also, is the skyliner open yet? If so, does it fit ecvs?

I am so glade you are telling your kids and I think giving them a day to settle in after camp is a great idea but if something comes up like they say something like mom you look really tired I would just tell them

If you do not you rent an ECV I would have a few off site places in your phone so you are not in need of one and trying to find number then. It will take a few hours or maybe days to get one and the one you get might be more money then you would have paid

The Skyliner is opening September 28 ( or the 29) it will take ECV wheelchairs and has a separate load unload area where they can stop the gondola so you will not feel rush getting in and getting out.

There a few stores at Disney that blows very cold air. I was standing in one spot when a CM said if you think this is cold you should try ( it was behind the castle store ) she was right the air was ice cold. I am telling you this because if you do need to cool down fast the CM sometimes know where the best spots are.

 

[disneydani]

Hi there....I usually lurk but your post brought me out of my “quiet” status. I am a fellow MS’er, diagnosed in 2006 when my kiddos were 5 and 11 respectively. I have been fortunate to be a long time AP holder so have a fair amount of trips under my belt post diagnosis. I have a few recommendations for heat intolerance aside from what has already been suggested. I use an ice vest from time to time...there are many types but I have found that the most effective with the Florida humidity are not the evaporative cooling types. The vests add some bulky weight but can provide good relief. Some are available through the MS Society if you meet certain financial guidelines. I also recently purchased an Embr, a small wrist device which syncs with your phone and delivers cooling pulses to your inner wrist. It sounds a bit sci-fi but it really works for me, although it is costly. In a pinch, downing icy cold water, with ice chips in it, will help cool down your core temperature pretty quickly. Lastly, I know navigating the diagnosis, treatment options and quest for answers can be overwhelming...I wish you the best and please don’t hesitate to ask if you have any other questions!

 

[RainbowGlitterToots]

Thanks again to all. I ended up needing to undergo a thyroid biopsy today as well, so depending on the outcome our trip may have to be postponed. I’m keeping my fingers crossed that all can be taken care of with enough recovery time. Will def look into the wrist cooling device as well!

 

[mamabunny]

Thanks again to all. I ended up needing to undergo a thyroid biopsy today as well, so depending on the outcome our trip may have to be postponed. I’m keeping my fingers crossed that all can be taken care of with enough recovery time. Will def look into the wrist cooling device as well!

Take care, and keep us posted! I will keep all my digits crossed for you as well!

 

[Echo queen]

This all seems new and evolving now, do you know your fatigue zone yet? It’s helpful to know this before taking on WDW. Good luck and healing grace.

 

[bopper]

You have a new normal. It is hard to accept.
But it is better to accept that if you can run on 80% energy that you used to, that you use tools such as ECVs to allow you to continue to do what you want instead of overexerting yourself.
Look into cooling devices.
Look into going at cooler times of the day (and year in the future).
If you need a rest, you can sit in a cool counter service restaurant while the kids go on a ride.
Make sure to let the kids know what is up.
Make sure to tell them when you need to slow down. They will see you and will forget you have pain/tiredness...so you need to make sure to not be a martyr.

 

[mamabunny]

You have a new normal. It is hard to accept.
But it is better to accept that if you can run on 80% energy that you used to, that you use tools such as ECVs to allow you to continue to do what you want instead of overexerting yourself.
Look into cooling devices.
Look into going at cooler times of the day (and year in the future).
If you need a rest, you can sit in a cool counter service restaurant while the kids go on a ride.
Make sure to let the kids know what is up.
Make sure to tell them when you need to slow down. They will see you and will forget you have pain/tiredness...so you need to make sure to not be a martyr.

"Normal" is just a setting on the washing machine at our house.