Date:    Tue, 11 Jun 1996 08:22:34 -0400
From:    Sandra Handler <[log in to unmask]>
Subject: Re: your mail

> Sarita,
> Perhaps you could provide us all with more information on Reiki.
> Sandra

Sandra, I haven't forgotton, but I can't find the msg I'd saved
from a local BBS. I asked the guy who'd posted it, but he hadn't
saved it either - he said he would do a short write-up, but I
guess he hasn't had the time. I'll try and look for it online
sometime this week.

>From [log in to unmask] Jun 17 09:43:11 1996
Date: Sat, 15 Jun 1996 09:09:22 -0500
From: Hannah King <[log in to unmask]>
Reply to: "Caregivers Are Really Essential (CARE)"
     <[log in to unmask]>

> Pam's message got me thinking that we caregivers just need to hear some
> positive feedback about our caregiving.  Indeed, we expect it from the
> rest of our family.  When no one tells us how wonderful we are and what
> a great job we're doing -- we get angry.  At least I do.  One of my

>After Pam's message, I realized how important it is for us to hear
>affirmative and affirming messages from our family members.  And how often
>we are disappointed.  I bet that they feel guilty and recognizing our

What's really galling is relatives who come and tell you how to
behave and what to do. In such cases, I would just ask them to
spend 2 days alone with the patient. No advice, just experience
what we live with, that's all.

Still, wouldn't you say the same applies to our relationship with
the patient? I think it did in my case, at least.

How often do we acknowledge the sheer courage it takes just to go
from one day to the next, when there's so little to look forward
to, when constipation makes a mess of your insides, when you hear
voices in your head because the doses haven't been spaced out
(excess dopamine - the lack of which causes PD - causes
schizophrenia), when you can't stand up on your own, when it
takes all your determination to just drink a glass of water by
yourself ...

Sarita

Date:    Fri, 14 Jun 1996 15:14:04 -0400
From:    Anne Martin <[log in to unmask]>
Subject: remission

>One of our members who was diagnosed with pd many years ago, treated with
>levadopa for years and then removed from all meds with no symptom for at
>least 15 years, has been re-diagnosed and told that she was in remission
>during those years. Has anyone ever heard of this? She and her family are
>having a tough time accepting it, and for that matter, so am I.

My mother's friend insisted she knew someone who had PSP, which
went into remission - personally, I always felt she'd gotten it
wrong.

I do know that 10 years ago, 4 "experts" were unanimous I had TB
- I wanted to get the biopsy over and done with, but my family
doc kept saying lets wait and watch, he stopped all the drugs,
just gave me an anti-histamine that used to knock me out half the
next day as well, and after 10 days, it all went away. Then
everyone said it was a virus and they were very happy it wasn't
TB ...

Sarita

Date:    Mon, 24 Jun 1996 09:51:46 -0400
From:    "E. Jack Savely" <[log in to unmask]>
Subject: Re: PAN Reflections II Udall, Fetal Tissue

>        Abortion is abortion!  Research is research!  Parkinson's is HELL!

So true ...

From:    SJS-OnTheNet <[log in to unmask]>
Subject: Digestive Tract Problems caused by PD: Any suggestions?

> in addition to her regular daily PD medications -- a bed-time dose of 2
> bromocriptine tablets. (When I asked him, during that visit, if there

I thought bromocritine was a PSP drug - *is* it generally
prescribed for PD?

>Over the next few days, she felt increasing constipated, her abdomen went

Constipation is a known side-effect, though I'm not sure whether
it is due to levadopa or bromocriptine.

>The ER found (via x-rays etcetera) that about 1/3 of her colon was packed
>with matter, that her abdomen was seriously distended, that she was
>seriously obstructed, and they immediately admitted her. Many of the doctors

My mother came very close to this once, but luckily it passed
without her having to go through surgery. Really, when I read the
digests, I feel grateful she missed the worst - tube feeding,
dementia, impacted stools ...

>Fortunately, despite the terrible battle that my mother had to go through
>("thanks", in my opinion, to her then-neurologist's incorrect, misleading
>advice), my mother pulled through all this and is now in an excellent rehab

Your mother's ex-neurologist gave you wrong information (no side
effects), but even if he HAD told you about the constipation, you
might not have had a choice. My mother didn't. There are only a
handful of drugs. Amentral and that lot didn't help her at all.

>(2) What solutions might you be able to recommend to the constipation
>problem or to getting the intestinal tract to function properly again?
>I'm open to whatever reasonably may help, whether it's from standard
>"Western medicine", or "alternative" medicine, and so on.

In India, we have something called "Isabgol", which works both
ways - loose motions and constipation (in fact, for a mildly
upset stomach, we prefer it to Lomotil) - but it might be too
mild for constipation caused as a side effect of PD drugs. Enema
didn't help my mother the one time she had one (in hospital).
Castor oil is supposed to be very effective. My mother found that
Dulcolax (don't know what it's called there) helped - strangely,
it was the chemist, not the neurologist, who suggested it. I
think the best thing is to try and control the diet as much as
possible. Someone I know said he sorted out her mother-in-law's
constipation by giving her ripe papaya milkshakes. Once again, it
might be too mild for constipation caused as a side effect of PD
drugs.

Sarita

Delana, I'd written a reply to you, but I seem to have
overwritten the file. Regarding info from Medline - I consult to
a pharma company, which subscribes to Medline on CD. They'd be
happy to let me search it, so let me know what to look for (PD,
human, eng, 1995/96?).

Barb, I'd sent you some articles on PD quite a while back. Did
you get a chance to go through them? How are your grandsons?

Sarita, Secondary CG for (late) Swarn, 5 years with PSP
Camilla, finally did a signature (is that the right word?) - is
it OK?

From:    Sydney Adams <[log in to unmask]>

>Major problems are-Initiating and sustaining movements.Getting medication
>to work.Falling over.

Sydney, as far as I know, falling over is typical of PSP, not PD.
Maybe you should get a second opinion?

Sarita

Date:    Mon, 8 Jul 1996 20:26:18 -0400
From:    Ricky Slaughter <[log in to unmask]>
Subject: Great News

>The result has been great! She (his wife) has become convinced
>(primarily by Krauss) that P is the way to go. They scheduled him for
>the Fall and then called to move him up to July 30!  WOW!

Good luck for the surgery.

>I have a spelling checker
>It came with my PC;
>It plainly marks four my revue
>Mistakes I cannot sea.
>I've run this poem threw it,
>I'm sure your please to no,
>Its letter perfect in its weigh,
>My checker tolled me sew.

I enjoyed this too. Have you seen this version?

I have a spelling checker,
It came with my PC.
It plane lee marks four my revue
Miss steaks aye can knot sea.

Eye ran this poem threw it.
I'm sure yore pleas two no.
Its very polished in its weigh,
My checker tolled me sew.

A checker is a blessing.
It freeze yew lodes of tyme.
It helps me right awl stiles two reed,
And aides me when aye rime.

Each frays come posed up on my screen
Eye trussed too bee a joule.
The checker pours o'er every word
To cheque sum spelling rule.

Bee fore a veiling checkers
Hour spelling mite decline,
And if we're laks oar have a laps,
We wood bee maid too wine.

Butt now bee cause my spelling
Is checked with such grate flare,
There are know faults with in my cite,
Of nun eye am a wear.

Now spelling does not phase me,
I does knot bring a tier.
My pay purrs awl due glad den
With wrapped words fare as hear.

To rite with care is quite a feet
Of witch won should be proud,
And wee mussed dew the best wee can,
Sew flaws are knot aloud.

Sow ewe can sea why aye dew prays
Such soft wear four pea seas,
And why eye brake in two averse
Buy righting want too please.

Sarita