RE: Re: Dorothy/itching and social workers

[Guest guest]

If she can sleep a few hours it usually subsides and is replaced with either

“my leg hurts†or “is it time to get up†I keep thinking it is some kind

of “sensation†that makes her feel like she’s itchy – maybe agitation

sometimes, or fatigue maybe or perhaps some kind of pain. I try to be sure she

has adequate pain medication and that I don’t miss anything because she does

have a hard time expressing/realizing when she hurts (and other times it’s

magnified x100!). Also make sure she isn’t too hot because she sleeps hot.

Hi Dorothy,

It was not until you mentioned the the part about " my leg hurts " that I thought

I could contribute to this. That could be a real clue.

My husband had Restless Leg Syndrome that can also be a symptom from LBD. Jim

got it very early on in his disease and could tell me the sensations he had. At

first, he was rubbing his legs and then it turned to slapping at his legs, it

was in both legs. He had a bad case of it.

But the anxiety and agitation he got over the sensations in his legs made him

itch all over, maybe because he was breaking out in small sweats (not

noticeable to me) from the agitation over the sensations in his legs. He told

me it felt like worms crawling in his legs and at times painful, he could not

get rid of the sensations. It was worse during resting periods like lying down

or sitting. At the time he could get up and walk around and keep his legs in

motion, that was the only thing that worked to rid the sensations. There are

now medications for Restless Leg Syndrome to calm the sensations, but they are

Parkinson's Medications and may cause other reactions. The only thing that

worked for my husband was Vicodin to deaden the sensations. Vicodin is habit

forming and brings with it other things it can cause, but it worked for my

husband and gave him peace to sleep, because he was sleep deprived and almost

going  insane, and so was I at that

point. As Jim progressed more into the disease the Restless Legs subsided and

the Vicodin could be dropped to very little dosage, if any. When Jim developed

Restless Leg Syndrome it was before anyone knew anything about it, and just as

LBD with doctors, they had no clue, until one doctor had heard of it and knew of

it. Vicodin was Jim's only saviour at the time to help him sleep, but there

could be other more friendly types of medications to help with the sensations

now. If I were you, I would really look into that comment about " My leg hurts "

because it could be very real and definitely lead to itching and you can not see

the cause at all.

If your mil can not walk or when she is lying down does she seem more relieved

if you massage her legs and make movement of her legs? When my husband could no

longer walk, I would take his legs and do kicking motions and do exercises with

his legs, as that tended to help his legs to keep them in motion. How is your

mil while sitting, does that bother her too? My husband could not sit for long

either. It does have something to do with the brain giving a message of the

feeling of sensations they get, so there is something with the brain triggering

the effect.

I hope you find a solution for your mil, so she does not have to live with those

sensations and give her some rest, if that should be the cause.

Jan Colello

San Francisco Bay Area, California

Husband, Jim, dx w/LBD Oct. 2003

Deceased, January 22, 2011

 

 

Subject: RE: Re: itching and social workers

To: LBDcaregivers

Date: Sunday, May 8, 2011, 7:29 AM

 

Thank you, also a great suggestion.

A little while ago you shared about sleeping in your husband’s room and we

have been trying this also from time to time but without a change in this

itching behavior. If she can sleep a few hours it usually subsides and is

replaced with either “my leg hurts†or “is it time to get up†I keep

thinking it is some kind of “sensation†that makes her feel like she’s

itchy – maybe agitation sometimes, or fatigue maybe or perhaps some kind of

pain. I try to be sure she has adequate pain medication and that I don’t miss

anything because she does have a hard time expressing/realizing when she hurts

(and other times it’s magnified x100!). Also make sure she isn’t too hot

because she sleeps hot.

But the other thing that’s been in the back of my mind – and was pointed out

to me off list – is the possibility this itching is some kind of

hallucination. If so it would explain a lot but then how to manage it better?

Maybe that’s why the placebo anti itching medicine works – as long as she

can remember she had it?

-Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of railfan2001@...

Sent: Sunday, May 08, 2011 5:41 AM

To: LBDcaregivers

Subject: Re: itching and social workers

Is it possible for someone to move into her room with her? Or move her into

someone elses room? would call out in the night if I wasn't there and he

awoke in a darkened room. I moved into his room and learned to sleep with the

lights on and the tv playing softly. He would still get up but I was there to

comfort and assure him things were okay. At least we both got some sleep each

night. And if I caught it early enough I could even keep him in bed by

addressing his concerns before he was fully awake.

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and

it’s a neurological maybe psychological thing †" nothing stops the

itching except for sleep but when she itches she won’t sleep. It is very

real to her however so I can explain it’s parkinson’s playing a

trick on her mind and she gets it - for about 5 seconds. I have gotten

absolutely no help anywhere with this †" not her doctor or neurologist or

the home health rns experienced with lbd and parkinsons (supposedly). Any ideas

or suggestions are welcome. This is

just one other thing that is costing us all precious sleep.

>

>

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday.

She sounds young and snippy and I had to ask her if she had any knowledge of LBD

and Parkinson’s †" she said she did. I told her well then I’m

surprised because you might have understood how much help she needs.

>

>

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

>

>

> Thank you

>

>

>

> Dorothy

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you Jan – my mil does have restless leg syndrome as well. And Vicodine

(hydrocodone) is the drug we use. I now give her one at bedtime routinely

because if I don’t I’ll be back to give it to her. Last night she needed

another which is within her dosing instructions so I did give her another just 2

hours after the last one. She did sleep until about 3am and after changing her

I gave her another pain pill. When she wakes about 2-3-4am it’s usually with

some kind of pain and I finally learned there is no way she will be able to

sleep without managing the pain.

For the restless legs we are giving her a very small dose of Mirapex with no

obvious side effect. I was very warey of trying it but it did not affect her

mentally or otherwise except she wasn’t having that awful pain in her legs

that vicodine could do little for. It’s the lowest dose tablet and very

rarely in the middle of the night the legs get bad again and I have the leeway

to give her another which helps and allows her to sleep. On those rare mornings

that she’s needed a second mirapex she is mentally foggy though it gets better

after 1-2 hours so I’m very glad those incidents only come about 1x every 1-2

months.

I’m going to look into this further and try and figure out if there’s a pain

issue triggering this, or if it’s fatigue or hallucination (sometimes lately

she has gotten itchy when she’s tired and sometimes when she’s too warm.

She is also drooling a lot when she’s tired in the afternoon.

Thank you for the suggestions!

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Janet Colello

Sent: Sunday, May 08, 2011 10:03 AM

To: LBDcaregivers

Subject: RE: Re: Dorothy/itching and social workers

If she can sleep a few hours it usually subsides and is replaced with either

“my leg hurts†or “is it time to get up†I keep thinking it is some kind

of “sensation†that makes her feel like she’s itchy – maybe agitation

sometimes, or fatigue maybe or perhaps some kind of pain. I try to be sure she

has adequate pain medication and that I don’t miss anything because she does

have a hard time expressing/realizing when she hurts (and other times it’s

magnified x100!). Also make sure she isn’t too hot because she sleeps hot.

Hi Dorothy,

It was not until you mentioned the the part about " my leg hurts " that I thought

I could contribute to this. That could be a real clue.

My husband had Restless Leg Syndrome that can also be a symptom from LBD. Jim

got it very early on in his disease and could tell me the sensations he had. At

first, he was rubbing his legs and then it turned to slapping at his legs, it

was in both legs. He had a bad case of it.

But the anxiety and agitation he got over the sensations in his legs made him

itch all over, maybe because he was breaking out in small sweats (not noticeable

to me) from the agitation over the sensations in his legs. He told me it felt

like worms crawling in his legs and at times painful, he could not get rid of

the sensations. It was worse during resting periods like lying down or sitting.

At the time he could get up and walk around and keep his legs in motion, that

was the only thing that worked to rid the sensations. There are now medications

for Restless Leg Syndrome to calm the sensations, but they are Parkinson's

Medications and may cause other reactions. The only thing that worked for my

husband was Vicodin to deaden the sensations. Vicodin is habit forming and

brings with it other things it can cause, but it worked for my husband and gave

him peace to sleep, because he was sleep deprived and almost going insane, and

so was I at that

point. As Jim progressed more into the disease the Restless Legs subsided and

the Vicodin could be dropped to very little dosage, if any. When Jim developed

Restless Leg Syndrome it was before anyone knew anything about it, and just as

LBD with doctors, they had no clue, until one doctor had heard of it and knew of

it. Vicodin was Jim's only saviour at the time to help him sleep, but there

could be other more friendly types of medications to help with the sensations

now. If I were you, I would really look into that comment about " My leg hurts "

because it could be very real and definitely lead to itching and you can not see

the cause at all.

If your mil can not walk or when she is lying down does she seem more relieved

if you massage her legs and make movement of her legs? When my husband could no

longer walk, I would take his legs and do kicking motions and do exercises with

his legs, as that tended to help his legs to keep them in motion. How is your

mil while sitting, does that bother her too? My husband could not sit for long

either. It does have something to do with the brain giving a message of the

feeling of sensations they get, so there is something with the brain triggering

the effect.

I hope you find a solution for your mil, so she does not have to live with those

sensations and give her some rest, if that should be the cause.

Jan Colello

San Francisco Bay Area, California

Husband, Jim, dx w/LBD Oct. 2003

Deceased, January 22, 2011

From: dsinouye <fullcircle@... <mailto:fullcircle%40sonic.net> >

Subject: RE: Re: itching and social workers

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Date: Sunday, May 8, 2011, 7:29 AM

Thank you, also a great suggestion.

A little while ago you shared about sleeping in your husband’s room and we

have been trying this also from time to time but without a change in this

itching behavior. If she can sleep a few hours it usually subsides and is

replaced with either “my leg hurts†or “is it time to get up†I keep

thinking it is some kind of “sensation†that makes her feel like she’s

itchy – maybe agitation sometimes, or fatigue maybe or perhaps some kind of

pain. I try to be sure she has adequate pain medication and that I don’t miss

anything because she does have a hard time expressing/realizing when she hurts

(and other times it’s magnified x100!). Also make sure she isn’t too hot

because she sleeps hot.

But the other thing that’s been in the back of my mind – and was pointed out

to me off list – is the possibility this itching is some kind of

hallucination. If so it would explain a lot but then how to manage it better?

Maybe that’s why the placebo anti itching medicine works – as long as she

can remember she had it?

-Dorothy

From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ]

On Behalf Of railfan2001@... <mailto:railfan2001%40prodigy.net>

Sent: Sunday, May 08, 2011 5:41 AM

To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

Subject: Re: itching and social workers

Is it possible for someone to move into her room with her? Or move her into

someone elses room? would call out in the night if I wasn't there and he

awoke in a darkened room. I moved into his room and learned to sleep with the

lights on and the tv playing softly. He would still get up but I was there to

comfort and assure him things were okay. At least we both got some sleep each

night. And if I caught it early enough I could even keep him in bed by

addressing his concerns before he was fully awake.

>

> For over a year at bedtime my mother in law gets itchy. Usually her head and

back and sometimes arms. Lately I am having to make sock mits and secure those

over her hands at night lest she tear her skin. She calls out constantly for

help while trying to scratch. There are no bumps, no rash no sign of anything

except where she manages to scratch. We ruled out everything under the sun.

Finally it appears it’s the lbd or parkinsons or whichever… and

it’s a neurological maybe psychological thing †" nothing stops the

itching except for sleep but when she itches she won’t sleep. It is very

real to her however so I can explain it’s parkinson’s playing a

trick on her mind and she gets it - for about 5 seconds. I have gotten

absolutely no help anywhere with this †" not her doctor or neurologist or

the home health rns experienced with lbd and parkinsons (supposedly). Any ideas

or suggestions are welcome. This is

just one other thing that is costing us all precious sleep.

>

>

>

> Oh, also I finally got her MediCal application through and while she has a

share of cost, they will help some with in home support services. Today a social

worker calls and starts telling the share of costs is high blah blah blah. I

keep saying I know it is, however any little bit will help. Finally I ask her if

she’s trying to persuade us to not try and get any hours for her to have

assistance? The social worker tells me yes. I asked her to kindly get over here

and complete the intake and decide how many hours and depending on that decision

we’ll know if we need to appeal or not. She is coming out on Wednesday.

She sounds young and snippy and I had to ask her if she had any knowledge of LBD

and Parkinson’s †" she said she did. I told her well then I’m

surprised because you might have understood how much help she needs.

>

>

>

> As my sleep is shortened my patience with these sorts is also shortened. I

wish they would just do their job correctly and stop making it so hard to get

any kind of help.

>

>

>

> Thank you

>

>

>

> Dorothy

>

>

>

>

>

>

>

>

>

>