Cooling vests

[T1-of-F1]

We are taking our kids and grandkids on vacation where it will be warm. Dumb choice for me but it was my decision. I want them to all have fun and be happy and I love the ocean. It is such a joy to have my family together enjoying themselves. My question is how do you all stay cool. If you use a cooling vest/device do you like it? Is it affective? Our lodging is air conditioned. T1-of-F1

[Fancy1959]

T1-of-F1, it's fancy again. When I have gone to the beach I have not had trouble with my Ms as long as I did not actually sunbathe out in the sand. This multiplies the Heat and reflects it up backed up on you and creates a lot of issues. Instead smother your sunscreen and put on old shorts and a top that covers your neck and shoulders and buy yourself a big floppy hat. Then sit at the edge of the tide line and stay cool by having water splash and come over you every time the tide comes in. It will do wonders to help keep your body's core temperature down. Remember to reapply your sunscreen often.

If you're going to Vacation away from the ocean using a cooling vest is a good idea but it usually only last an hour or maybe two at the most. You can also have cooling neck wrap that keep your neck cool. Keep on your big hat and cover up with long fun, cool summer clothes like a long skirts and a top that covers your shoulders and neck and it's also cool. Take frequent breaks inside an air-conditioned buildings and make sure you hydrate hydrate hydrate. That goes for both on the beach and away from the beach.

Now I want to put a thought in your head. You need to be extremely careful. You might want everyone to have fun and I know you were the one to pick the vacation spot which is a warm location but remember this. If mom and grandma gets sick and has to go to the hospital or is even restricted to staying in bed at the motel room is anybody in the family going to have that great of time? Be honest with yourself when you answer this question. And you will be totally left out of the mix and even if they have a semi good time you will not be able to experience it at all. If it's already set up be careful and try it this time but it's a definite consideration to take into the planning stage of your next Family Vacation. Take care of yourself and I look forward to our next reply. I want you to remember that together we are stronger! Fancy

[Blcasey279]

My husband bought me a cooling vest when I was first diagnosed and it has been a life saver! It's a bit of a hassle to keep the cooling pads frozen until your ready to use them when you're traveling but well worth the effort. I also found a little (tiny) around the neck fan which has helped in places like doctors offices, movie theaters, and anywhere you don't access to a cooling vest. Hope this helps.

Brenda

[KariAnne365]

I originally thought my intolerance to heat had to do with menopause until I 1) found so many ppl with MS have this issue, and 2) it became so bad and different than it is with menopause.

[agapepilgrim]

T1-of-F1 love the relief of my cooling garments. Got them from MSAA. Nice scarf ties around neck, 1 for each wrist, 1 for each ankle, and 1 goes around torso. All have Velcro closings, pockets fir the frozen packs, that you get double packs for all. I keep frozen in cooler when travel and on beach. I survived beach vacation that was already scheduled! And home! Before diagnosis dr had said menopause and giving HRT. Now just cooling garments.

[johnMSAA Partner in reply to agapepilgrim]

Glad you like the cooling garments you received from us, agapepilgrim ! I'll pass that on to our Equipment and Client Services departments - they would LOVE to hear the kind words!

Cooling vests are just the start, yep - we certainly help set people up with other pieces like scarves and wraps. You can learn more about them here:

mymsaa.org/cooling

- John, MSAA

[agapepilgrim in reply to johnMSAA]

johnMSAA I still would love to get the vest!! At the time I ordered the garments, the neurologist assistant had promised to obtain me the vest, but she didn't come through with that promise. The smaller garments are great, but there are times when I have a "MS lava hot attack" I would like to immerse myself in a vest! I did send in a positive customer appreciation report, but was told the vests could only be obtained in the spring! I thought that strange because I do have the lesser hot flashes in the winter when others may have sweats and long handles on! lol I think it would be great if there was a huge data colllection of ALL the symptoms reported by MSers and have on a spreadsheet by body area, or something, so we could find peace with our symptoms. I have had unexplained extremely painful sharp pains in the right side of chest for about 15 years. Worn a lot of 24 halter tests, etc., etc.. I actually stop walking in my tracts, or gasp for breath, or slightly moam, actually like a labor pain or worse. THEN, 2 days ago, on MS.net, a blogger posted he had the same pains. That brought peace!!!! The unknown brings the fear. Another MSer posted had pain on her tongue, and was very worried. I told her I have had "Burning Tongue Syndrome" for 12 years now and just don't eat spicy foods, and use baby teething cream on my tongue when it is bad. She was greatly relieved. But, it would be a great project for someone to accumulate because the neurologists have told me a lot of my symptoms are not MS related, but, yet, other MSers have the SAME symptoms! We know!

[johnMSAA Partner in reply to agapepilgrim]

Appreciate the positive experience you had with obtaining the garments, agapepilgrim ! Yes, there are certainly peak times of the year where are cooling vests are most sought after (namely, summer)...and unfortunately can only provide a certain number as far as our budget will allow throughout the year.

We always looking for more funding for our Cooling and Equipment programs, as we know how popular they are in the MS community! As I'm sure you know, every little bit helps when we ask our supporters.

Definitely reach out to our Client Services department via the Cooling application page info and see how they can help now:

mymsaa.org/cooling

And great idea about the master list of symptoms that includes areas of the body and data collected from people with MS - we'll take it under advisement here at MSAA! For now, we have a great and comprehensive section on the List of MS Symptoms, including treatments for each symptom:

mymsaa.org/symptoms

- John, MSAA

[agapepilgrim in reply to johnMSAA]

johnMSAA Thank you. I will contact them. As for the symptoms, I have already done a lot of research, and the symptoms I refer have never been listed anywhere. They are the rare ones that scare us, worry us, and the doctors are confused, so they gloss over them. Some I have which I have noticed others have, which have brought relief to both of us: Burning Tongue Syndrome, very severe left side chest pains that take my breath away (as painful as labor pains), ringing in ears, hallucinations, delayed sleep disorder (different than insomnia), temporary loss of location, temporary loss of hearing a conversation, and others I total forget at the moment (another symptom. lol).

[Fancy1959 in reply to johnMSAA]

JohnMSAA, it's Fancy1959. I got my cooling vest through a promotion done 2-3 years ago where the gave the vest away free if you applied on time. Then they have their neck wraps at most MS Walks I have a attended to help keep the participants cool.. I just wanted to put that out there. We don't thank the National MS Society or the MSAA enough for everything they do for us. So here's for a great big THANK-YOU John for all you do. Fancy.

[erash]

T1-of-F1 my cooling vest gives me about 20 min. Of slight relief here when very hot, humid in fla. then just feels like a heavy extra to tote around.

My cooling towels help me recover when I get back inside.

Sadly, I used to love to walk, jog the beach. Not ideal anymore...guess the fantasy of retiring to a beach house will remain a fantasy.

But life is good! 😊

[agapepilgrim in reply to erash]

@erash try the cooling garments from MSAA, no heavy at all, and back up ice packs to reload when they get hot! Love mine! Glad you are still able to jog and walk!!

[erash in reply to agapepilgrim]

Thank you agapepilgrim im using Coolture products. I think they were recommended by MSSA? I think the problem isn't the vest but the Fla environment and my very petite size.

[agapepilgrim in reply to erash]

@erash Most definitely!! I lived in Florida all my "growing up" ears and couldn't wait to get out of that state. I graduated from North Miami Beach High School, started Dade County Junior College. Unless I am breathing in ocean air, I cannot breath in that state. And I am highly allergic to mold, so all those concrete houses in the big moss covered areas in central Florida where most of my relatives, wrecked havoc with my body! I love the beaches, and visit twice a year, but only where I can smell the salt air and the breezes that blow the humidity away. I would need central air at all times down there, if I lived there again. The ankle wraps, and the wrists wraps and the neck wrap do help me, though, here in Kentucky, when the humidity gets back in the summer time!

[erash in reply to agapepilgrim]

agapepilgrim there are definitely places I lived that I prefer over Fla. but also would no longer want the winters of where I grew up in Rochester NY.

Where in Ky r u? I was stationed Ft Knox late 1970s. Beautiful state!

[agapepilgrim in reply to erash]

erash we live in Lawrenceburg,about 40 miles east of Louisville. We moved here because of the beauty of the rolling hills and mild seasons. I had never seen fall foliage on trees until I lived in Illinois when I was 19! I love the changing seasons but 1 month of winter uscenough for me!! I have a lot of relatives in Florida but I love the beauty of the seasons. Wouldn't want to live any farther north.

[Fancy1959 in reply to agapepilgrim]

@erash, it's Fancy1959. I live about 10 to 15 minutes away from agapepilgrim in Versailles Kentucky.

I love this part of the country also. As long as we don't have the winter like we had two years ago with 24 inches of snow that stayed on the ground for almost a month!

Agapepilgrim give me a shout at your convenience I've got information about the water toning / stretching / aerobic activities that you were interested .

[agapepilgrim in reply to Fancy1959]

Fancy1959 Ok. Ive got a call to set up appt with OT that my ins covers, that they want to show me what they want me to do based on their evaluation they made of me 2 weeks ago at the request of Dr. Twyman. I haven't called them back due to recuperating from severe bronchitis. After I visit them, I will get with you. Thanks.

[Jesmcd2 CommunityAmbassador in reply to erash]

erash l got mine through

nationalmssociety.org

1 800-344-4867

It was made by Polar. The vest is a wrap around and comes in pieces so you can Velcro it to the size you want. The only thing l don't like about it is that, there is no "give" in the packs. They are flipping bricks of ice so l got soft ice packs for it. Doesn't last as long, but l can take my dog for a walk, and go to my friends house in comfort.😊

Jes🌠

[erash in reply to Jesmcd2]

Jesmcd2

Thanks! Will def. look into

[T1-of-F1 in reply to Jesmcd2]

Thank you this is helpful

[Jesmcd2 CommunityAmbassador in reply to T1-of-F1]

You get all kinds of info here.😅 Even if you don't ask lolol

Jes🌠

[vintageone in reply to erash]

If balance is the issue you could try the OTvest weighted vest. The weight piece is hidden inside that helps with balance as it rests around your shoulders, upper back and front like someone kind of holding your shoulders to stabilize you. The weight piece can be taken out and put in the refrigerator or freezer quickly and really cools me off. otvest.com

[heidilegs]

Hi their a new meal less out that help me out in the heat it is made with golf balls I got it last summer it is great good luck heidi

[rjoneslaw]

I would suggest you contact MSAA they have a program that helps you get a cooling vest. I have to say the vest is great along with the neck tie the ankle and wrist cooling wraps. They get it from polar products. So if you need additional cooling packs or just to see what they have check them out. The packs can go in the freezer or you can submerge them in cold water. I did go to polar product's website. I got the gel packs that you could put in your bra. As you know the girls hold a lot heat and like to sweat 😊 If you get anything from them make sure you get the items that have gel packs. They do have somethings that don't have the gel packs. I have say thanks MSAA for the cooling program!!!