Cooling vest questions.

[senny_sen]

Hi,

I'm an old member, but I was only really active in the tourette syndrome thread before, as I have tourette syndrome. Since my time on the old boards, I've met and have lived with my boyfriend and his parents, about 4 years now. Anyway, his mom has MS, and is very heat sensitive. If its over like 75o she rarely leaves the house (she is in a wheelchair now but even still its too hot). We were doing some looking around the internet about cooling vests. But I was wondering if anyone has had an experience with one. And if there is a 'better' one out there for people with MS. Because she is in a wheelchair, I don't think she could use the one with the fans, as the intake looks like it is on the back, and her sitting would block air from getting in.

Also, anyone have experience with their insurance paying or helping pay for it? Anyway, any input would be great. We would love to be able to have her get out more in the summer time, as is, lots of outdoor events are off limits because they are during the day, and often have little shade.

Thanks!!!

[Virginia]

Hi Senny and welcome to Braintalk.

I have stopped going out in the heat unless I just have to, but I use to have a couple of scarves that went around the neck. I can't remember exactly how they worked but I do remember that I had to wet them to activate them. They stayed wet and cool for quite a period of time. This really helped and was not in the way of anything. I bought mine in a store that sold things like gardening supplies and bird houses. I guess because a lot of people who are not heat sensitive just want to be more comfortable when outside, so they sold them in places like that. I feel sure they are still around. I have not looked for any in several years because I just stopped staying out in the heat as I progressed.

Good Luck,
Virginia

[senny_sen]

Thanks Virginia!!

My boyfriends mom has gotten to the point where she still goes out to restaurants and stores (that we know are well air conditioned like malls or chain restaurants), however some days when its say 75o or above, just getting from the house into the car, or after eating/shopping, from her wheelchair into the car, is so much instead of just being a one person transfer, will take two of us because the heat is just to much for her. I like the idea of a cooling scarf, I also read about wrist and ankle bands that help cool the body as well, but think that for her, the full on vest might be the best, because it would cool her whole body better, although I wonder if the vest with the scarf, ankle and/or wrist wraps would be the best. I think to answer that it would be trial and error really!

Thanks for replying so quickly!! I'll check out our local gardening places as well to see what products they offer!

[Cherie]

There are several good cooling products out there. Basically three types...water activated...immerse in water for a few minutes and pat dry then the cooling crystals in the vest or collar or hat enhance evaporation to keep one cool. These work better in dry climates and not more humid environments and are the least costly.

Second type is passive with refreezable inserts that will keep one cool for up to several hours at a time. I find that the gel inserts, while more flexible, do not stay cool as long as those that freeze solid. I have a steele vest and can wear it with the 5 frozen inserts for 2-3 hours in 90 degree heat and be fairly comfortable. Polar products have a similar vest as steele for less cost and also a few more styles to choose from.

Then there is active cooling made popular by NASA and the ms association of America. These have a cooling pack that runs water through iced coils in the vest (I suspect this is the fan you are speaking about). This is by far the most costly and there are very few people who need this degree or high tech cooling device.

one company Only registered and activated users can see links., Click Here To Register... gives a 10% discount on cooling products if you add a note at check out stating you have MS. Your bill is adjusted. They also generate 15% off your next order coupons when you review a product for their website.

[senny_sen]

Thanks. Honestly, we are not as concerned for cost, as we know if it helps his mom get outside and enjoy more activities its worth every penny! I am wondering, when she gets hot, as she states "her legs stop working" in that, usually she can provide some 'resistance' in that she can bear her weight while leaning on a grab bar or holding one of us, long enough to help her dress, or transfer from her chair to the toilet, or her chair to the couch. Would wearing the cooling vest keep her whole body cool so that she would not have as much of a problem with the strength in her legs? Thanks again for such quick and definitely helpful replies.

Just checked out the website... the wheelchair seat cushion actually looks pretty rad too... Tomorrow i'm going to show her and she if she thinks its worth a try... and they are having a sale for two, so she could have one on her back and one under her.. and for the sale price, i'm definitely willing to spend that on the chance that it will help her!!!

Thanks so much for that site!!!!

[agate]

The MS Foundation offers free cooling equipment for persons with MS:

Only registered and activated users can see links., Click Here To Register...

Some years ago I received a Steele cooling vest through them as well as a wheelchair pad. Both work by gel inserts that you prepare in your freezer. They're helpful--but the effect does wear off in a couple of hours.

Unfortunately, according to the Website information, you have to apply between February 1 and June 1 for these.

The MS Association of America also offers free cooling equipment:

Only registered and activated users can see links., Click Here To Register...

I'm going out today. Except for a couple of 20-minute turns around the neighborhood, it will be my first time out since mid-July. I wouldn't have gone out in mid-July either but had to have a tooth out. Going out in the heat is pretty difficult.

[stillstANNding]

Hey Senny- I need a daughter in law:) Not the cooling stuff - got that- just a daughter in law.:)
ANN

[SalpalSally]

Hey, thoses Lava buns look great, for cooling or heating. I guess you could keep one or two in a cooler and trade them after they cool down or heat up??

[agate]

I found the LavaBuns in the link Cherie posted. It looks as if you get one Microcore Element, and so you would need to buy more than one if you wanted continuous cooling.

A nice thing about the Steele vest is that there are several cooling elements, and you can wear a couple of them while keeping more on tap in the freezer, ready to replace those that warm up too much. Of course if you don't use all of them at once, you won't be quite as cool, but I've found that wearing all of them makes the vest too heavy for my preference.

It comes with a detachable collar that has its own cooling element too.

Another handy cooling aid I received from the MS Foundation was wristbands. You have gel inserts shaped like popsicles,and you keep them your freezer, then put them into the wristbands and wear them. It's amazing how much it helps to cool your wrists.

Only registered and activated users can see links., Click Here To Register...#

[Cherie]

I bought a second set of inserts for the Steele Vest so if I'm using all 5 on a very hot busy day, I still have 5 fresh ones. The two sets usually will keep me cool enough to function for about 6-7 hours.

And yes, keeping the core (torso) cool does help to keep the legs functioning. I "lose my left leg" when I get overheated or over tired or am dehydrated. And it does not happen gradually. It's like it's there one minute and gone the next and if I don't have something to hang onto, a fall is usually the result.

LavaBuns are good for heating but not so good for keeping cool.

If whole body cooling is needed, the MS Association of America is your best bet to get what you need.

[Jeanie Z]

:o You can get the neck version at any Harley Davidson dealership. I used one when I rode the motorcycle years ago. Also I got the vest with the freezeable inserts from the MS Foundation or MS Society or the MS Association. I cannot remember which one as I have had it for years.

Even though I no longer walk around even with a walker. I do squats holding on to two grab bars to keep my leg muscles strong enough to transfer and stand when needed.

I do get weaker in the heat quickly and Ilive in Florida. We have been over 100 a lot of days this year so I seldom go out unless necessary. Thank God for AC. Jeanie :o

[Gabriella7]

Steele Vest

Yes, I would recommend MSAA also as that is where I got my Steele Vest. Thanks for the idea of getting additional cooling packs to change out later as it does only last for a couple of hours here in our 90+ temps. It is around 5 #'s but with her being in a chair that shouldn't be a problem. This summer I didn't get out to anywhere but to eat in air conditioning inside and in the car.

Gabriella

[NeuroNixed Craig]

I invested in a cooling vest by "Cool Sport" back in 2000 when first diagnosed with RRMS at a cost of $120. I've used it successfully for these many years now, however, due to the weight gain from progressive disability and all of the meds side effects, it just barely fits. Back then they only had the three sizes of small, medium and large. Today it is a very competitive market with plenty to choose from depending on your needs. The Internet is the best place to search and shop online and with the varieties of cooling vest make sure you read the small print as some are not designed for high humidity environments. There are many more sources of funding assistance than be then also, some of which have already been mentioned here.

Read the reviews and check other non-affiliated sources before investing in a good quality vest. You will literally get what you pay for in quality, service, and functionality.