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Heat Intolerance- Member Topic for the Month of June

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    Heat Intolerance- Member Topic for the Month of June

    Your Member Topic for the month of June is here!
    You made suggestions and we listened!


    Thanks to all who participated in May's Member Topic of the Month!

    For the month of June, your topic will be on how to control and manage heat intolerance and at what temperature does the heat intolerance begin to affect you.

    Please join us in this important conversation on ways you manage this since summer is here! Your thoughts and concerns on this topic are always welcomed.

    Thank you all for your participation and stay tuned for more topics from your suggestions in the months to come! We appreciate all your thoughtful ideas and hope to hear more from you! You can add more suggestions here: http://www.msworld.org/forum/showthr...the-Month-quot
    Last edited by Seasha; 06-19-2016, 11:46 AM.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    #2
    letme just mention that MSAA has a cooling vest program.they provide cooling vests for no cost to applicant's. You can find the applications here,
    http://mymsaa.org/msaa-help/cooling-products/

    wishing you all the best
    Last edited by Seasha; 06-06-2016, 12:42 PM. Reason: correct url
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

    Comment


      #3
      The heat has always bothered me The heat goes right to my legs When I could walk my legs would get real shaky

      As soon as the temperature goes above 71 the air conditioners goes on and I don't go outside

      It seems like the weather goes right from winter to summer and you can't even have the windows open the ac goes on

      The humidity is even worse for me in the summer

      Still looking for a place where temps stay the same all year

      Shoo
      Shoo

      Comment


        #4
        My bedroom is kept as close to 65 as I can get it - summer or winter. I can't sleep when it gets up to 68 - 69 degrees. During the day I try to keep the house as close to 70 as possible. Closing drapes helps block the sun () which helps keep the house cooler. 75 degrees is my upper heat limit - over that it is just a matter of time before I turn into the wicked witch and melt .
        I am grateful for my DH who pays the electric bill. He has demanded that I keep cool, no matter what the bill is.

        Going outside early or late is, of course, best but life doesn't revolve around me, so I make sure that I stay hydrated and that trips outside are short.
        Light meals help also (salads don't have to be heated up and they are good for you ). And thinking about food - don't heat up the kitchen unless you have to - and when you do then cook and freeze enough for another meal and use the microwave.
        Remote start on my car helps (if I remember to use it).
        Before my night vision got so bad I would shop at night - It was cooler and there weren't as many people to have to deal with.

        Shoo - humidity bothers me too. I had purchased some humidifiers for the house because it is so dry, but found that I can't use them .

        hunterd - thanks for the link for cooling vests. I will be checking that out .

        Comment


          #5
          Hi Guys I live in Queensland Australia (beautiful one day prefect the next) but like everyone when the weather warms I tend to isolate myself in the coolest rooms of the house, in Australia we get an allowance for electrical medical cooling (not much but it helps) keeping off my feet and not stressing helps good luck everyone Craig

          Comment


            #6
            I live in Texas where the heat is stifling from the end of May through early October. I often feel like a prisoner during this time because my activities are seriously curtailed. I can start feeling negative temperature effects in the low 70s combined with moderate humidity. I definitely do better in lower humidity climates.

            We keep our in-home temperature between 63-68 (thermostat allows a range), but I have a fan in every room where I spend any significant amount of time. Our home has dual-air conditioners for zone cooling and ceiling fans in frequently used rooms. In our bedroom, I have an secondary air conditioning system right near my side of the bed and have an industrial fan blowing. Thankfully we have a solar power system that provides a significant amount of our power requirements.

            For personal cooling, I have everything from cooling cloths, ice pack vests, to active cooling systems that recycle water through an ice chest and then through tubing on a shirt +/- pants. Despite having great cooling gear I have a hard time keeping my head and face cool. I hope to get a migraine ice-cooling cap in the near future. For now, I carry a personal fan (Vornado) with me everywhere we go and plug it in. Yes, at a restaurant or the doctor's office I break out a fan and turn it on me! Sad, I know, but a necessary evil.

            I wrote a post on heat intolerance suggestions at the following link:

            http://www.msworld.org/forum/showthr...f%92s-Syndrome

            Comment


              #7
              Wow, Marco - you have all the tricks of the trade! Guess if I lived in Texas, I'd be prepared too.

              We have only periodic heat waves where I live, so I am not nearly as prepared as you. I have a cooling vest, but it's way too heavy for my small frame and it doesn't last long. I do have some cooling scarves.

              My problem is that I also have Raynauds, so you'd think the heat would be my friend. Not so when the temps reach 80's and low 90's as of lately. I do my gardening in the early to mid mornings, then I'm "trapped" in my home for the rest of the day (no AC here either) with fans blowing. I wish someone would personally recommend a cooling vest that's not expensive, light weight, and lasts longer than 1/2 hour.

              I love being outdoors on sunny days but my tolerable range is 65-73 degrees max. What helps keep the house cool is to open windows at night when temps are cooler, than close windows mid morning. It seems to work for most of the day, but by late afternoon it's back up to high 70's
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                how i stay cool

                Originally posted by Kimba22 View Post
                Each month, we will feature a new topic that was suggested by YOU, our MSWorld members. MSWorld volunteers will review them, and select one for our "Member Topic of the Month."

                We welcome your suggestions! Please submit them here.

                Thanks, everyone, and watch for our "Member Topic of the Month," coming soon!
                i use a chill skinz chillskinz,com cooling towel to keep cool as well as a small spray bottle as well as wear a hat, stay inside when it gets too hot (above 80 degrees) inside i have a ceiling fan, a floor fan and a portable air conditioner. now that i am not using my balance wear vest i am considering a cooling vest.

                Comment


                  #9
                  hot!

                  I live in NYC, hot & humid. The vests are way too heavy, feel like they weigh more than me I use cooling neck wraps, soaked in cold water, then turned around every so often, because they eventually pick up body heat. Sometimes I stick them in the fridge.

                  AC is on whenever necessary.

                  I have a golf-cart type roof called The WeatherBreaker, made by DIESTCO in Chico, California
                  Keeping feet and wrists cool helps.

                  Eating light meals, keeping hydrated, not letting PC and iPad get overheated, overheating me, by taking breaks.

                  Years ago I took swimming 'classes' via the MS Society. That was very helpful and fun. But the last time I tried swimming (among elderly people, not MS cohorts), I, my body, couldn't remember how to swim! Too weird.

                  Cool bathtub soaks, if getting in and out is possible without too much trouble. If not, then soaking feet in cool water basin, if getting it filled without spilling everywhere is possible

                  But basically I simplify everything by not going out at all when it begins to get very hot, constantly check the weather reports, looking for temperature, heat index, and dew point index. When I do go out: light-weight sun hat, loose, light-colored clothing that 'breathes,' sandals, water bottle, neck wrap, scooter with rooftop.

                  Hope this helps.


                  **Edited by moderator in compliance with guideline #3**
                  Last edited by Kimba22; 06-26-2016, 09:05 AM.

                  Comment


                    #10
                    Originally posted by Seasha View Post
                    Wow, Marco - you have all the tricks of the trade! Guess if I lived in Texas, I'd be prepared too.
                    While in high school I worked a roofing job in the middle of the summer. That was 110+ every day and I never had a problem. We would play full court basketball for hours in the middle of the heat, grab a shower and then go out at night. Now, I don't mess with the heat!

                    It was after a serious overheating episode that I ended up in the hospital, disabled and put out of the workforce. In 10 days I lost my ability to work, walk, talk and so much more. I still have deficits after hundreds of therapy sessions, multiple treatments (including baclofen pump surgery).

                    So I do have more cooling gear than most people, but it allows me to periodically go out during the summer. My schedule has already been modified due to the heat where I only do one thing per day and not during the hottest part. Next month I will be limited to one activity every other day (like a doctor's appointment). It's just too hot and too hard on my body.

                    For me, the heat feels like I am wearing a backpack and every day weight gets added to it. I am a complete wreck by the end of the summer. Eventually a move may be in order, but there aren't too many places where the temperature doesn't get into the 80s and the cost of living is manageable.

                    Comment


                      #11
                      input

                      80 degree weather or higher does me in. Of course, humidity makes it worse, less tolerable. And, breezes help.

                      No matter where you live, and have A/C, call your electric company and ask if there is a discount for a medical need for your A/C. They can tell you no. But, they can also tell you yes.

                      Cooling products: If the vest works for you great. Scarves/towels work well too. Keep extras to trade with in an ice chest when out and about, if you can be out and about. For ladies, and excellent idea is a cooling bra. Oh how I wish I had known about them sooner. For many years that was my issue. I have since had breast cancer and had a double mastectomy without reconstruction, because I did not want to have heat issues in that area.

                      Cool or ice water really helps.

                      Cooking and doing dishes is over rated. Try to limit hot cooking, if you desire, use a crockpot to limit heating your kitchen.

                      Also, the simple fact of doing your laundry (or at least the dryer portion) during a cooler time, is an ideal situation, too.

                      Comment


                        #12
                        GREAT SUGGESTIONS! thank you for theM.
                        hunterd/HuntOP/Dave
                        volunteer
                        MS World
                        hunterd@msworld.org
                        PPMS DX 2001

                        "ADAPT AND OVERCOME" - MY COUSIN

                        Comment


                          #13
                          HEAT, I HATE IT

                          I can take heat into the low 70s f when the humidity is low. My house is kept between 68f and 70f degrees all year long.
                          I just do NOT do hot and humid weather. I take to my bed with a large fan aimed at my body until cooler temps prevail.

                          Comment


                            #14
                            Extra allowance from Centrelink

                            Originally posted by dastardly View Post
                            Hi Guys I live in Queensland Australia (beautiful one day prefect the next) but like everyone when the weather warms I tend to isolate myself in the coolest rooms of the house, in Australia we get an allowance for electrical medical cooling (not much but it helps) keeping off my feet and not stressing helps good luck everyone Craig
                            Hi 'Dastardly'.. Didn't know if you were on a Disability Pension or not, but if you are, there is another allowance you are entitled to from Centrelink if you receive a payment from them.. The Essential Medical Equipment payment which you can claim for each piece of equipment needed (i.e. air con, nebuliser, C-Pap,etc). Hope this helps anyone else reading too.. Cheers... Jen

                            Comment


                              #15
                              Handling Heat

                              Living in Southern Cal, I have many of the items mentioned, cooling scarves, spray bottles, ceilings fans in all rooms and central air conditioning. Perhaps the most effective has been improved attic insulation in our home. We had never really thought that insulation just like our bodies SAG overtime and living in a house that was built in the 70s it had sagged dramatically. It was costly but I think worth every penny and it improves the home. We now have R 30 insulation throughout the attic and an attic fan that has cut our air conditioning cost. We very seldom use the air conditioning but I keep the house right between 68 and 70° .

                              As someone mentioned, I too cannot cannot sleep if the bedroom is over 68°. We have outdoor thermometers that check the temperature on the north, south and rear side of the house so when the temperature goes down outside we open the windows and get the evening breeze. This careful monitoring and the cooling dance we do with the windows results in only using the air conditioning at night, maybe four nights a year.

                              I also freeze grapes throughout the week and have frozen pineapple; when I'm really hot I'll just put a few grapes or pieces of pineapple in my mouth. That cools me down fairly effectively along with the cooling scarf of course. Since I keep the house cool, I have found that if I keep the cooling scarves at what temperature it is not a shocking to my body when I put them on myself.
                              Cheryl

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