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Re: Patti

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Hi Patti-

My uncle is in a lot of pain, and almost daily. He was diagnosed

with PD 18 years ago. He had a terrible fall 3 weeks ago, and

that has caused him even more pain. We are hoping he gets to

go home from the hospital on Monday.

My thoughts and prayers are with you. You are walking a similar

walk as my uncle. You have been in my thoughts a lot lately.

Hugs from Iowa-

Sandie

-- Re: Questions

Hello Piper,

I am having neuralgia pain on the left side of my head nose and ear.

I am very sluggish, slow and stiff including my brain. Therefore my

pain is worse today. Maybe tomorrow I will be better, but that is

what I thought yesterday so we will just have to wait and

see....Hugs...Patti

> Hi, Patti,

>

> With my dad, the mental part was first. Looking back, the mental

slippage

> was occuring for many years prior to us noticing anything was

particularly

> wrong. My father is in the end stages of LBD, but is still

mobile. He cannot

> perform any tasks for himself, but he can walk.

>

> Thinking of you and hoping the rough spot is getting better,

>

> Much love,

>

> Piper

>

>

>

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Hello Sandie,

I must say Pain is something that I have had to endure for years now.

The amount of pain is very fluctuating, but to tell you the truth I

don't remember what it is like to be pain free. The neuralgia's come

and go. The Tegretol I take does not get rid of the pain, but does

make it more tolerable. I have tried neurontoin for this, but does

not seem to do as well as the Tegretol. I have been seen by a

Rheumatologist and arthritis has been ruled out as the cause of my

pain. The one thing I have learned particularly with the Neuralgia

pain is that if it hurts don't touch it. So I will go on looking like

an old hag until this neuralgia clears up as it hurts to brush my

hair. Actually it hurts to wear my glasses, but I really have no

choice there as I cannot walk without them. It worsens my balance.

I am terribly sorry about your uncles fall. I can't imagine breaking

a hip. I have been lucky so far as the worse I have done has been a

deep bruise and breaking a tooth. I do wish him a speedy recovery as

the pain encourages depression, which encourages more deficits in the

brain. God Bless you all....Hugs...Patti

> > Hi, Patti,

> >

> > With my dad, the mental part was first. Looking back, the mental

> slippage

> > was occuring for many years prior to us noticing anything was

> particularly

> > wrong. My father is in the end stages of LBD, but is still

> mobile. He cannot

> > perform any tasks for himself, but he can walk.

> >

> > Thinking of you and hoping the rough spot is getting better,

> >

> > Much love,

> >

> > Piper

> >

> >

> >

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Hello Sandie,

I must say Pain is something that I have had to endure for years now.

The amount of pain is very fluctuating, but to tell you the truth I

don't remember what it is like to be pain free. The neuralgia's come

and go. The Tegretol I take does not get rid of the pain, but does

make it more tolerable. I have tried neurontoin for this, but does

not seem to do as well as the Tegretol. I have been seen by a

Rheumatologist and arthritis has been ruled out as the cause of my

pain. The one thing I have learned particularly with the Neuralgia

pain is that if it hurts don't touch it. So I will go on looking like

an old hag until this neuralgia clears up as it hurts to brush my

hair. Actually it hurts to wear my glasses, but I really have no

choice there as I cannot walk without them. It worsens my balance.

I am terribly sorry about your uncles fall. I can't imagine breaking

a hip. I have been lucky so far as the worse I have done has been a

deep bruise and breaking a tooth. I do wish him a speedy recovery as

the pain encourages depression, which encourages more deficits in the

brain. God Bless you all....Hugs...Patti

> > Hi, Patti,

> >

> > With my dad, the mental part was first. Looking back, the mental

> slippage

> > was occuring for many years prior to us noticing anything was

> particularly

> > wrong. My father is in the end stages of LBD, but is still

> mobile. He cannot

> > perform any tasks for himself, but he can walk.

> >

> > Thinking of you and hoping the rough spot is getting better,

> >

> > Much love,

> >

> > Piper

> >

> >

> >

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Hi Patti-

Well, my uncle didn't break his hip, thank goodness for that,

but he did bang himself up with cuts and bruises. As you said,

the pain adds to depression, and such is the vicious circle. I do

know he had a terrible charley horse in his leg from getting up

and being walked - once again, one thing led to another - but

he was trying to work through the pain. He doesn't complain

much, yet we could see the pain on his face. I am not sure

if he is on any meds. currently, since his hospital stay, but I

will pass on the 'Tegretol' medication you mentioned, and

I am hoping my uncle has good luck with it as you are. Truly,

I am not sure there is any safe drug to take that will actually

knock the pain out without also knocking out the PD person.

Thank you for your prompt reply. Once again, you remain

an inspiration to me.

Sending blessings back your way, with hugs-

Sandie

-- Re: Patti

Hello Sandie,

I must say Pain is something that I have had to endure for years now.

The amount of pain is very fluctuating, but to tell you the truth I

don't remember what it is like to be pain free. The neuralgia's come

and go. The Tegretol I take does not get rid of the pain, but does

make it more tolerable. I have tried neurontoin for this, but does

not seem to do as well as the Tegretol. I have been seen by a

Rheumatologist and arthritis has been ruled out as the cause of my

pain. The one thing I have learned particularly with the Neuralgia

pain is that if it hurts don't touch it. So I will go on looking like

an old hag until this neuralgia clears up as it hurts to brush my

hair. Actually it hurts to wear my glasses, but I really have no

choice there as I cannot walk without them. It worsens my balance.

I am terribly sorry about your uncles fall. I can't imagine breaking

a hip. I have been lucky so far as the worse I have done has been a

deep bruise and breaking a tooth. I do wish him a speedy recovery as

the pain encourages depression, which encourages more deficits in the

brain. God Bless you all....Hugs...Patti

> > Hi, Patti,

> >

> > With my dad, the mental part was first. Looking back, the mental

> slippage

> > was occuring for many years prior to us noticing anything was

> particularly

> > wrong. My father is in the end stages of LBD, but is still

> mobile. He cannot

> > perform any tasks for himself, but he can walk.

> >

> > Thinking of you and hoping the rough spot is getting better,

> >

> > Much love,

> >

> > Piper

> >

> >

> >

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