I don't know if this is "symptom" or "behavior", but my LBD husband is always cold. He has been for over a year, but it is getting so very worse. He will sit around the house (@ 73 degrees) in a shirt, sweater, and hoodie. Sweatpants and blanket. And then seriously complain about being cold. Woa be to anyone who opens the door to come and out of the house. He is almost unbearable when it comes to someone else's house. The doctor said that this is just another part of the disease. I have ordered some fingerless gloves that might help and warmer clothes. I think some of this is partially his mental attitude. Any suggestions?

Katie,

In Parkinson's Disease and atypical parkinsonism disorders, the body's autonomic system is out of whack. One of the things that the autonomic system controls is the body's thermoregulatory system.

So, it could be LBD or it could be this is the way your husband is. You might consider doing more of the same kinds of things you are already doing -- electric blanket, wool sweater, hot water bottle, heating pad, etc.

Robin

Derek, too, is always cold and has been for several years. Wears two layers including fleece through the summer.

My dad was freezing most of the time in his last few years. The last time I took him out in the summer (Eastern Shore of MD, about 50 mi. from where you are so you know how hot and humid it is there) he was "too cold". He had on a long sleeved cotton shirt, heavy polar fleece jacket, hat, pants, shoes and socks. It was about 95 with about 95% humidity and I had to take him back in his room where he insisted on having the AC off all summer. His poor aides were so hot in there trying to change him, his bed, etc. That was the last time I ever got him outside because it was always "too cold".
Before we knew he had anything wrong he'd probably been very cold for at least 2 - 3 years. I couldn't get him to fix the AC in his house because he thought it was fine - it was blowing hot air the last month he lived there till I insisted we put in a new system!
Just buy your LO warmer clothes, like wool socks, long sleeved undershirts, fleece (all my dad's nice wool sweaters went through the washer and dryer at the ALF. I don't think these people had ever owned a good wool sweater!) So I'd buy him fleece jackets that zipped up the front and they were great! Lynn

Thank all of you so much. I have just realized that he needs more clothes but it is so nice to hear others say it. Support and confirmation is such a wonderful thing. Thanks!!!!

I give my MIL a microwavable heating pad that she can hold. This helps a lot. Before she moved in with us she dressed in heavy clothing and did not use a/c even though it was 98 degrees outside. She wouldn't drink water and consequently dehydrated regularly. Sweat cools the body and she would feel even colder as her body was overheating. Now we have her with us and we make sure she drinks lots of water. If she complains that she is getting cold, even with all of the clothes and blankets, we give her some water and she is better for a while.

It isn't just their perception of temperature, either. My husband's hands are sometimes ice cold and the right is always colder than the left. We have several crocheted throws to wrap around him in the wheelchair when necessary. This coldness goes off and on--it's not constant.

yea….you gotta quit trying to figure out this stuff….

I added a new diagnosis when I was at mayo in august this year: Hyperhydrosis….I literally sweat my little butt off….
mayo specialist said: 'one of the most impressive cases observed'…
the test is a trip thru an 'easy bake oven' or Earl Shieb 'Fact-O-Bake'…..whichever one you relate too….
I literally sweat out thru every pore in my body…..once started…sweating….hard to stop…..or at least….not immediate….
they put an moisture indicator covering your whole body and measure liquid lost….also…..while monitoring temperature of body, internally and externally….

so heat makes me….HOT…..

then on the other hand….

I have new purchased heating pad, and heat blanket…..

my hands and feet are near always ice cold…..my hands look blue….purple….most times….

good luck figuring out this stuff….

Craig, that's interesting. My husband seems to have stopped sweating altogether a couple of years ago [I'm sure this isn't actually possible]. About eight or nine years ago [well before diagnosis] he began to exude brownish sweat that would stain the sheets of the bed. It was likely to have been a type of seborrhea rather than sweat as he began to have very oily skin and scalp about that time which I know is related to PD.

Pat,

I understand even the hyperhydrosis is non standard in presentation across population…

usually hands, palms, forehead, armpits, feet, or some combo of some such body area.

mine seems to be everywhere….

ole Lewy just sets up in different places…and wrecks havoc…mayhem….

an undefinable mishmash of non related symptoms concocted by the most devilish chef….

defying definition even in your face….

…..

I used to love the cold….
to be out in the cold…
with a gun….
from before daybreak to past sundown….
or a fishing pole…

and now at 56….
I sit in a recliner with an electric heating blanket…
overwhelmed by most anything…...

Craig, be careful not to electrocute yourself. Electric blanket+hyperhydrosis.....

Hyperhidrosis is uncommon in DLB. The most common sweat pattern is distal anhidrosis -- the lack of sweat at certain spots. Global anhidrosis is less common in DLB.

"Dusky, violaceous hands" are typically a sign of MSA.

There are lots of similarities in autonomic dysfunction between MSA and DLB.

Pat….yes….that is a concern…..even more so in the summer….when drenched completely…
(ugly side note to my hyperhydrosis: I have a constant battle with fungus…and remembering to bathe)

I conduct like a superconductor….static charges drive me nuts….

Robin…

my thoughts…..DLB is not a static broke part….it is a dynamic broke part….
defies static logic….requires dynamic logic…

requires dynamics and novelty in approach….
it does not present in rigid time and space….
cannot be described in rigid time and space….

it is fluid, dynamic, improbable, indefinable, untouchable, till the end…
then when it no longer exists….it is or it isn't….

Coy needs it warmer than he used to. By itself I would chalk that up to age. My mother keeps her apartment so hot it is hard to visit her, and I remember my grandparents liking the thermostat high and lots of sweaters.

Coy's bigger problem is suffering from summer heat. You may recall that I bought him a cooling vest last summer, so he could golf.

Coy says he hasnt't sweat for years. I think he may be right. Perhaps that contributes to his reaction to heat.

Craig, it sure does seem like the broke parts are dynamically broke, doesn't it?