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 Does LBD cause higher suceptibility to heat exhaustion? 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Robin, do you happen to know if anyone has tried getting a doctor's order for the cooling vest and then requesting Medicare reimbursement for at least part of the cost? I looked them up and the ones I found aren't cheap.

I guess actually my main concern would be whether my mother would even use the vest. She complains bitterly about being too hot, even with A/C on and two fans blowing in her room, but she is also becoming extremely resistant to anything new. In fact, it is just about impossible to reason with her about anything anymore. If something is important, I don't even present it to her as if she has any choice. I just tell her that's the way it is. I hate being so dictatorial but it sure saves a lot of useless arguing.

Julianne


Sun Jul 10, 2011 4:12 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
MS patients can get one product gifted to them….from MSAA~ ….I think….

when I thought I had MS….

I actually still go to the local MS support group….and the folks there are going to try to get me one…..

they gave me a head band that has crystals in it….you wet it and it is supposed to activate for days before needing to be cleaned or tossed….I haven't tried it yet….

I am in the process of buying things that I might need in the future….doing this with the backpay I got from my LTD….a cooling vest is the last thing on my list….if the money holds out….I will buy one….

maybe this can be a future program for LBDA….cooling vests or other gear might be a big help in quality of life for other patients besides me or Coy….might make it tolerable for someone to go outside for a time longer….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Jul 10, 2011 4:22 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
WooHoo. I emailed Coy's case worker to see if the program he is on (through the county) would cover a cooling vest. Yes. She ordered one and he should have it in about 2 weeks.

I am very grateful for that suggestion, and for this valuable forum.

:P :P :P

hmmm ... I guess I should have asked about foreign legion desert hats, too! :roll:

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jul 11, 2011 12:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Julianne,

I don't know if Medicare will cover this. Most of the people in our local support group using a cooling vest are not of Medicare age.

Before you purchase one, I'd suggest jury-rigging something similar using a frozen gel pak, a think towel, and an Ace bandage.

Robin


Mon Jul 11, 2011 1:18 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Jeanne,

Glad the cold vest suggestion is of interest. Hope it works...

The topic of "heat stroke" has come up several times before. You might do a search to see if there were other good suggestions.

Robin


Mon Jul 11, 2011 1:21 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Lynn - thanks I have some camping socks that may do the job - not the itchy kind :P Thanks everyone else for all the info on the cooling vests! I think it might help me too! I am grateful for you all....

Best,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Mon Jul 11, 2011 4:28 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Robin,

Good idea. If we try the gel pack first, maybe it will give us an idea of whether my mother would tolerate the vest. She is more and more fussy about everything these days. I'd gladly buy one for her but just hate to waste the money if she won't use it. It's just hard to know anymore. She is on a downhill slide the past few months and it is difficult to make anything right for her.

Julianne


Tue Jul 12, 2011 9:38 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Golf was cancelled today because of rain, so we didn't have to make any decisions about the heat index. There is a heat advisory out for this area through next Wednesday. Coy will definitely be spending that time indoors with AC. :P

I contacted Dr. Boeve today about a couple of issues, one of them the senstivity to heat. He was very enthusiastic about the cooling vest. I can't wait for it to get here!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jul 15, 2011 10:32 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
We certainly haven't needed the A/C this summer! Cold & rainy. I think we've had four nice days since summer began.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 16, 2011 12:31 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
The cooling vest arrived, the thermo packs have been hydrated and frozen, and Coy tried it out on the driving range tonight.

I want to thank Craig and Robin for the suggestion!

Tonight was not a real test of its cooling ability, but I asked Coy if it felt heavy or got in his way. He said he forgot he had it on. So far, so good.

In case some of you (like me) had never heard of a cooling vest, here is what Coy's looks like.


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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012
Thu Jul 28, 2011 10:31 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Nice pictures, Jeanne. Looks like Coy still has a pretty good stance.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jul 28, 2011 10:37 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
cool...

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Thu Jul 28, 2011 10:55 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Did the ice paks last the entire golf outing?


Thu Jul 28, 2011 11:49 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
I think he was just at the driving range.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jul 28, 2011 11:51 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Does LBD cause higher suceptibility to heat exhaustion?
Robin, he was just at the driving range tonight. They are supposed to be effective for 3.5 hours, which is longer than his 9-hole golf outing. I'll let you know tomorrow afternoon how it goes.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jul 29, 2011 12:17 am
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