Cooling Vest suggestions for MS

[maryserv]

I've searched the DISBoards and didn't see anyone with cooling vest suggestions for those who can't tolerate heat (like those with Multiple Sclerosis). Anyone out there with experience at Disney with these and any suggestions? We're going at the end of May, and I KNOW I'm gonna need it. Thanks!

 

[peemagg]

I don't know about cooling vests, but we are bringing the cooling collar wraps. You can get those in the sports section of Walmart or at sporting stores. They work pretty good to cool you down.

 

[mechurchlady]

http://www.silvereagleoutfitters.com/

http://www.steelevest.com/

http://www.coolvest.com/product-demo.shtml

Those are three that have been brought up in prior posts.

http://www.froggtoggs.com/store/choose.asp?ItemNum=CP100&ItemType=%
They have that cooling cloth that uses water.

There are many types and people on this board do use them but they are not around right now. They are very effective in keeping a person cool based on what prior posters have said. Also great trip planning helps avoid the heat as much as possible.

 

[bonybroad]

I use one - MSser here too.
I rec'd it from my local MSS. Sent it to me free - just had to ask for it.
It works verey well for me.
It's worth a call to see what your chapter can do for you.

 

[Piper]

I got one through my PT (insurance paid for it) It isn't pretty, but it works!

 

[maryserv]

What kind is yours?

 

[Piper]

What kind is yours?

It's a Be Cool byTechniche International. It is royal blue quilted....not heavy....and I usually wear it over a solumbra long sleeved shirt and with a white solumbra bucket hat that I have had for years! So I am not a fashion statement (well, maybwe the wrong kind of one!)

 

[bonybroad]

Mine goes under my clothes. It's mesh except where the gel packs are.
It's Cucumber brand.

 

[maryserv]

I just found out there is a Durable Med. Equipment code for the vests! I've looked at so many kinds and have learned more than I could ever want to know. My understanding is that I need a phase-changing vest instead of an evaporative vest to work in humidity - which I of course have here and in Florida! I've never heard of Cucumber and will check that brand. I looked at all the other ones posted so far, and had a nice call to the National MS Society yesterday where she gave me more info.

I was a little bummed yesterday 'cause I was so exhausted from the heat and many symptoms came back to haunt me that have been gone a while. But, it is 72 today and I feel much better.

If anyone wants to know what all I've found, just let me know! Mary

 

[bonybroad]

Mary,
I'm so glad you found some useful information! Our MSWalk is tomorrow, and it's in the 80s here. You can bet my vest is in the fridge right now getting ready!

 

[SueM in MN]

I would also add a 'cautionary tale'.
My son in law is only in his mid 20s, but has had MS for quite a while. My oldest DD (his wife) and he came down to WDW with us on our recent trip in March. He did a bit too much and ended up one night with painful leg spasms. It's very easy to overdo because you may not be walking that far at one time. When you do your walking in little bit here, bigger bit here, little bit here, it's very easy to loose track of just how much you have done.
He knew that renting an ECV was an option, but just never thought he was doing that much until he actually had a problem. He probably also got dehydrated; that evening he and my DD had been out by themselves. He didn't have much alcohol, but alcohol dehydrates you because it uses water to be metabolized. A little alcohol with a little dehydration can lead to a lot of trouble.

 

[maryserv]

Thanks Sue! I also heard some points on the ActiveMSers website about watching potassium levels to make sure they stay where they need to be. I'm not sure how to do this and awaiting the answer from the OP. I ordered what I'll call a "cheapy" vest and some head bands. I've also sent off for the two foundation funded vests hoping at least one will choose me. Lastly, my neuro is going to do a letter to show medical necessity for a cooling vest and MS. Can you believe most insurance agencies have them listed as experimental and investigational!

So how do you all do your day, layer your clothing with your various cooling garments on, rest and do as much as you want to at Disney? I would love to hear some great stories that don't involve "walk a while in the sun, get too hot, find a place to sit down with A/C, kid goes crazy, finally get up and its too late to do whatever"...

What are your favorite devices, especially at Walt Disney World?

 

[maryserv]

I am so excited! Today I got a cooling vest set from MSAA! It has the ice packs, wrist wraps, neck wrap and I chose the garden hat. All have "double ice" which means I can have another set in a cooler at Disney while I'm wearing a set. I can't believe it. I give thanks to God for this blessing and want to let everyone know. .

I actually did the application online, it was the easiest application. I mailed in another one and my neuro is doing a "letter of medical necessity" for a vest because my insurance co. (Aetna) has cooling garments listed as "investigational and experimental" (right....)

So now, I wonder who has used the gel pack and switched them out, what was your technique? Did a cooler with ice work?

 

[mickeymaker2003]

I think the first aid station at each park can keep them in the freezer or fridge there for you. You drop it off in the morning and switch them out when you need to and pick them up before you leave the park for the day. If going this route, I would label each pack with your name and phone number. Also, you can get a fridge for medical purposes for free if you are staying in a value resort (they are in the mods and deluxes already) so you can keep them cold overnight.

Good luck!

 

[maryserv]

Oh, that is a great idea, so I don't have to lug around the cooler. Thanks a bunch!

 

[maryserv]

Ok, so now I have a vest. It is a Polor Ice with the inserts that go in the freezer. They are dang cold when I put them on! As the cold dissipates, the packs become more bearable. I am wearing them over a shirt. They worked quite well while I gardened this past Sunday.

Also, I have the wrist and neck wrap (both with the ice packs). Does anyone have any clever ways they "prettied them up" so you don't look like you are scuba diving?

Thanks, Mary