Does Anyone You Know Have Multiple Sclerosis?
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Sweetbabygirl | Wednesday, June 25, 2003 - 05:38 pm     And if so, how are they handling the heat? I need a few ideas to pass on to my mom, who suffers from it. Any suggestions will be appreciated. |
Weinermr | Wednesday, June 25, 2003 - 05:46 pm     Air conditioning. I'm not being flippant. My DW absolutely must stay out of the heat for any length of time. It saps her strength, causes her pain, and sets her back for days or weeks. We have to limit her time out in the sun, and have to keep the house cool. We have air conditioning in our house, and it is virtually a medical requirement. Of course she goes outside and enjoys the sun, but she can't be out for long. I've also heard of certain kinds of cooling vests that people wear, but we haven't looked into that. I don't know if this helps or not, but that's our experience. |
Sweetbabygirl | Wednesday, June 25, 2003 - 06:07 pm     Thanks, Weiner.....I'm looking into the cooling vests and I also want to get Ma a few cooling bandanas for her head; if you are interested in the products, try www.bodycooler.com I had her soak her feet in cold ice water today(just thought it would help). Naturally, it didn't. Unfortunately, the MS causes problems in her legs....everytime it is hot, her legs/feet swells and her walking gets bad. |
Jmm | Wednesday, June 25, 2003 - 06:14 pm     Here are a couple of sites that have some information for you. I wish I could help more. MS info at Mayo Clinic National MS Society |
Sweetbabygirl | Wednesday, June 25, 2003 - 06:17 pm     Thanks, J....I have the National MS Society on my 'Favorites', and I've been into the Mayo Clinic website. I've pretty much read all I could about MS, but thought there were other tips I should know about, in terms of keeping cool. |
Draheid | Wednesday, June 25, 2003 - 06:31 pm     SBG: I went to Google.com and typed in the search window +Multiple +Sclerosis +cool +tips and found many links to articles about this topic. Click here for the same search. The first article I went to, About.com Walking tips, had some excellent information on it. Hope that helps. |
Twiggyish | Wednesday, June 25, 2003 - 07:07 pm     I know a few people with it here in FL. They stay in the air conditioning constantly. |
Hermione69 | Wednesday, June 25, 2003 - 08:11 pm     My brother's wife has it. Like most people are saying above, she needs to stay indoors a lot during the summer time. She is usually has to bypass things like trips to amusement parks and when we all go to the beach, she rarely leaves the condo. I'll ask her later for more suggestions and let you know what she says. |
Sweetbabygirl | Thursday, June 26, 2003 - 07:21 am     Thanks, guys for all your suggestions. MS really sucks....I love my mother more than my own life and hate to see her suffer. |
Hermione69 | Thursday, June 26, 2003 - 07:46 am     I understand. It does suck. My SiL first started showing symptoms when she started college. She woke up one morning and just could not get out of bed. Her legs would not move. The leg immobility didn't last, thank heavens. Her symptoms ebb and flow a lot. She is in her mid-twenties now and she has been having a rough time lately. She is very unsteady on her feet these days. She always seem to lurch when she walks and my brother told me she has been having a lot of problems with her vision again. She gets a shot once a week; she just started that about a month ago. They had the worst time getting insurance to help with the cost. Isn't it awful that most insurance plans will pay for Viagra in a heartbeat, but not medication for something that threatens your quality of life to the degree that MS does? But don't let me get started on that. I will see my SiL at the beach next week and will ask her for some suggestions. Best wishes and prayers to your mom. |
Emeraldfire | Thursday, June 26, 2003 - 08:10 am     SBG, My closest friend was diagnosed with MS years ago. His body could no longer take the heat and humidity of LA so he moved to Virginia. He now works from his home where he can control the temperature. MS is such a horrible disease to have to battle, you and your mom are in my prayers. |
Tabbyking | Wednesday, July 09, 2003 - 12:21 am     i was thinking LA as in los angeles, then i realized you must mean louisiana for the humidity problem. isn't virginia humid, too? i have only lived in mass and ny, but they were both horrid for humidity. i thought the entire east coast was! hermi, your poor SiL got it early. most often it starts when someone is in their late 30s. not a good disease by any means. i feel for each of you with loved ones suffering from MS. |
Ginger1218 | Wednesday, July 09, 2003 - 01:15 pm     I have 2 cousins and 3 very close friends with MS. I do a lot of fundraising work with the MS Society. As a matter of fact, next week I am going to a dinner at Pfizer Headquarters, given by the MS Society for the amount of fundraising we did this year. It is a terrible illness. I can suggest something that they sell I believe at the Sharper Image (there is a website) and it is a neck thing that keeps you cool. Sort of like air conditioning worn around the neck. Check it out. |
Landi | Wednesday, July 09, 2003 - 08:00 pm     My sister-in-law has it. She has no feeling below the ankles, her tastebuds are wacko, but she's in GREAT spirits. She found that most of the MS support groups were just a bunch of people sitting around griping about what they CAN"T do... instead of what they CAN! |
Weinermr | Wednesday, July 09, 2003 - 08:10 pm     Landi, You're so right! My DW stopped going to support groups for just that reason. She and a friend of hers have their own support group - just themselves. They go out to lunch together and support each other over the phone and any way possible. The regular support group was bringing her down. |
Sweetbabygirl | Thursday, July 10, 2003 - 09:56 am     I understand what you guys are saying, but on the other hand the support groups are just that....giving support whenever you feel bad about not being able to do things that come naturally to us, like walking, etc. The MS website is good, in that I like to go into the chatrooms and pick out certain posts for my mother to read and relate to. She isn't always down but when she is, outside of me listening to her she seems to like the printouts I give her.....she always says "Damn, at least I'm not the only one." Going to stop now, beginning to get emotional about this frickin' disease. |
Closetfan | Thursday, July 10, 2003 - 10:47 am     Sweet - I don't have any advice to offer, really. My sister has MS and the heat really saps her energy too. She just trys to avoid it as much as possible. I try to keep her out of it by dropping her off at the door of the store/movie and then parking the car and stuff like that. Hang in there...your mom is lucky to have your love and support. |
Ginger1218 | Thursday, July 10, 2003 - 02:33 pm     <hugging Sweetbabygirl> awww, I know sweetie. |
Emeraldfire | Thursday, July 10, 2003 - 07:16 pm     {{{Sweetbabygirl}}} You are not alone. I have watched my dear friend suffer with this disease. I have seen what it has done to a strapping 6'5" man with a heart of gold and I have grown to hate it intensely. We are all here to hold you up and support you. You and your mom are in my prayers. |
Rissa | Tuesday, July 15, 2003 - 11:55 am     A little late coming to this.. my ten year old has had pneumonia for the last two weeks {sigh}. Anyway, asked a dear friend of ours who made a sarcastic comment about A/C then said that he runs cold, cold water over his wrists every so often and it really makes him feel cooler all over. He also has a home made "scarf" (about 2 feet by 4 inches) filled with some sort of grain which he keeps in the freezer and puts on the back of his neck while he is at his desk working. |
Sweetbabygirl | Tuesday, July 15, 2003 - 12:07 pm     Riss, funny that you mentioned the scarf....I ordered one for Ma last Friday, and look forward to seeing how it works out. Thanks for the suggestion though, I really appreciate it. |
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