At 19:41 1998/11/13 -0800, you wrote:
>Hi,
>
>My mom ( Jane ) has been deterioating every day. She had=20
>a cat scan done of her brain today and it turned out normal.=20

pd does not show up in a cat scan

>The Doctors now think that it is her Parkinson's that has=20
>suddenly gotten worse. And that it sometimes happens with=20
>some people.=20

but it's most unusual
unless it is something other than pd

mis-prescribed meds is the gravest danger facing anyone in hospital

>Day by day she is going down. Tonite our family
>Doctor phoned to tell me those cat scan results and told me=20
>that they have decided to put in a feeding tube ( nose ).=20
>This morning they put in an IV.

this will eliminate any dehydration, i hope

>They are upping her sinemet 200/50 ( 1/2 tablet 3 times a day ? ). They
>have taken mom off Artane. If the sinemet doesn't work they will try
>amantidine.=20

if artane kept her mobile before
why is she not back on it now?

>Mom doesn't even know where she is anymore. She didn't
>recognise a friend last night who came to see her. Physically=20
>she is so weak she can no longer move, her tremor is bad and=20
>she is soooo rigid, and she is very drowsey. Mom is now acute=20
>and I don't know if she will even be alive in a few days.

untreated pd symptoms - my opinion
[i'm off =3D brief]

>Our Doctor is talking about mom's living will and if I will be able to come
>to the hospital at night if the time comes ( I'm in a wheelchair ).
>
>Is there any hope for my mom? She had trouble with most of the Parkinson's
>drugs including requip.
>
>Take care
>
>Bye for now
>
>Susan

hi susan

has your mom's neuro seen her at all in the past week?
has he been informed as to the speed of her decline?
did dr calne at ubc ever respond to you?

what is her g.p.'s name and phone number?
and her neuro's?

i've included my previous posts to you for reference
my concerns are unchanged

janet


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Date:         Tue, 3 Nov 1998 12:02:42 EST
Subject:      Re: Hi / what happened  4 weeks ago?

hi susan

you wrote, in part:
>I am new here. My mother is 66 and was diagnosed with parkinson's
>in '92. She also has rheumatoid arthritis and osteoporosis. My mother
>was managing ok on Artane and sinemet ( on occasion ) for the last
>couple of years. Then this last month she began to freeze, her feet
>began sticking to the floor, her shaking became worse. Then last week
>she really went downhill.... on the floor, she could not get up and I=
 called
>an ambulance. She is now in the hospital. She can't feed herself ( her
>hands are terrible from the arthritis )... The Doctors are giving her
>2 sinemet a day ( I think ). Is it normal for people to go down that fast
>with Parkinson's? My mother has been frail for a long time but managed
>with my help. ...Is this the end? My mom was only diagnosed 6 years ago.
>PS my mom had seen her neurologist 4 weeks ago and he had been
>impressed at how fast she got up out of a chair ( Why are people alway
>better at the moment they see the neurologist and then they go home
>and they are the same or worse? )

in my view, there is something dreadfully wrong with this picture
it sounds to me like some change must have been made
four weeks ago in your mother's meds or other routines
to cause such a dramatically fast downhill slide
pd doesn't work that way

the initial freezing and tremouring that started four weeks ago
seem to me to be classsic pd symptoms
and indicators of levodopa shortage

the sudden slide sounds like a med inter-action problem to me

and no, this is not the end!
but it sounds to this amateur detective
like it's time for a beginning of better med management

your mom needs to become maybe with your help
her own advocate in learning about pd and pd meds
and how her body responds to them

don't listen to the doom-sayers - they don't know pd!

your mom's neuro would be the best source of clues
toward solving this mystery

please let us know what happens

your and your mom's cyber-sis

janet

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Date:         Fri, 6 Nov 1998 14:08:53 EST
Subject:      Re: Hi, again / susan's mom's four-week [!] slide

In a message dated 1998/11/06  14:25:33, you write:
<<  I was talking to our family Doctor last night about my mom.
 She says her tremor is worse and she is concerned about my mother's memory.
 She thinks that my mom may have either dementia or may have been having
 tiny strokes along the way. She also mentioned that mom was having trouble
 with her bladder and she is wetting the bed at night. Mom is having great
 difficultly using her hands ( arthritis/Parkinson's and has a hard time=7F
 using the call button to call the nurses. She is terribly constipated and
 her lower back is causing her pain. She not able to walk on her own and is
 very very weak. She needs help to be fed. I don't think my mom will be
 coming home. The way she is right now I could never look after her. Plus
 her memory seems to be deteriorating faster....I talked to our Doctor about
 taking mom to the movement disorder clinic but I feel that mom has gone
 down so much and is too frail and she feels that in the end that it
 wouldn't hold much hope and also mom has not had very little success with
 many of the parkinson's drugs. Even Requip didn't help.

 I am going in to see mom today. My cold is better ( it's not gone ) but I
 really want to see how mom is doing. I wish there was something I could do,
 besides tell my mom I love her and watch her deteriorate... I think she
 will have to go into a nursing home and in the past we had discussed this
 and she in no uncertain terms to me that she did not ever want to go in
 one. With me being in a wheelchair and being not very strong physically
 there is no way I can look after her.  >>

my dear susan

this still sounds like a mis-diagnosed or mis-understood situation to me

for your mother to have deteriorated so quickly
from being able to look after herself
!!! *** only four weeks ago *** !!!
to her condition now

this all sounds very much unlike pd's 'progress'
and very much like her current carers' not understanding pd
and its medications and their inter-actions
viz:

1. of course her tremors are worse  - she's been taken off pd meds

2. if i were taken off all pd meds [yikes]
i know i'd be so uncomfortable that i wouldn't appear coherent either

3. back pain =3D easily a symptom of under medication of pd

4. trouble walking alone =3D ditto

5. very 'weak' =3D ditto

6. troubles with minor motor activities =3D ditto

7. frequency of need to urinate =3D ditto

6. constipation is a typical pd symptom
probably exacerbated by her lack of pd meds:
long term constipation is dangerous and potentially fatal

do you have someone else there
who could help you get tough with the medical situation
what about her neuro - is he aware of what's happened to her?

do not assume that because someone has a medical degree of any kind
that they know how to handle pd
sadly enough, it just ain't so

please make sure somehow or other
that this doesn't spiral down into an unnecessary tragedy

i'm not 'hammering' at you:
[well, i am - but only with the best of intentions]

i can barely express how strongly i feel about this;
there but for grace, go i

holey-moley
i'm only a few years younger than your mother
and i've had pd considerably longer

janet

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janet paterson - 51/41/37 - almonte/ontario/canada
http://www.newcountry.nu/pd/members/janet/
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