You're welcome. The following messages contain the info on the PD group in Portland. As you will read, I have questions about the info given, which I haven't gotten answers to as yet. But before I forget, I thought I'd send along what I have. The main info is all there actually.
I'll pass on the clarification when I get it.
Good luck!
Charlotte Mancuso
---------------
Hi Helen,
I'm confused: PRO is in Portland, and that is not the group you work directly
with? The Parkinson's Center of OR is your group, and the local number for
which is 503 413 7717? And what does PDX stand for? Sorry, straighten me out
please.
Parkinson's Center of OR in PDX??
Parkinsons Resosourses of Oregon (PRO}.
charlotte
-------------------------
From: Helen
To: [log in to unmask]
Subject: Re: Need info
Date: Mon, 20 Jan 2003 15:12:13 EST
Hi ,
Nice hearing from you. The name of our org. Parkinsons Resosourses of
Oregon (PRO}.
Parkinson's Resosourses of Oregon
2145 NW Overton Street
Portland, OR 97210
1 800 426 6806
The name of the president of Parkinson's Center of OR is Jay Nut. Hi
assistant is Julie
Carter (RN) (BS) Both are Great. If I can do anything more let me know. If he
wants the local (Here in PDX the number is 503 413 7717.
On line WWW.parkinsonsresourcessj.org.
Helen
---------- Erin Codazzi <[log in to unmask]> writes:
From: Erin Codazzi <[log in to unmask]>
To: [log in to unmask]
Subject: Re: doctors
Date: Wed, 22 Jan 2003 07:06:29 +0000
Thank you for this information.
I find it very interesting that one of the side effects for Mirapex is
difficulty breathing. I'm just sure the increased dosage has caused this. As
for the joint/back/foot pain, she has tried a number of over-the-counter
drugs to relieve the pain, to no avail.
I will pursue getting another doctor's opinion. I'm sure it is difficult to
determine how each individual will respond to varying courses of treatment.
I believe family and, ultimately, the patient, are the best judges of that.
Thanks again for all your help - and everyone else's as well!
erin codazzi
>From: Charlotte Mancuso <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: doctors
>Date: Mon, 20 Jan 2003 08:48:16 GMT
>
>Erin,
>
>One of the possible but more common side effects of Mirapex is anxiety, as
>listed below. I copied the side effects portion of the disclosure and the
>web site.
>
>Whatever the cause or causes, it's treatable, as is the pain. Why not try
>the standard anti-inflammatory pain drugs--over-the-counter or
>prescription--I recommend she take prescription doses for the pain--for me
>that's what it takes to keep the pain at bay. But she needs to get a doctor
>to recommend what's right for her. Again, whatever the cause or causes, she
>doesn't need to be in pain or having physical symptoms from anxiety. Also,
>is she depressed? Many patients present with depression before
>diagnosis--serotonin is affected by PD. Again, treatable. Of course, all
>this is only my opinion.
>
>----------------
>http://www.gettingwell.com/drug_info/rxdrugprofiles/drugs/MIR1271.shtml
>"What side effects may occur?
>
>Side effects cannot be anticipated. If any develop or change in intensity,
>inform your doctor as soon as possible. Only your doctor can determine if
>it is safe for you to continue taking Mirapex.
>
>More common side effects may include:
>
>Abnormal dreams, arthritis, chest pain, confusion, constipation, decreased
>sensitivity to touch, difficulty breathing, difficulty walking, dizziness,
>dizziness upon standing, drowsiness, dry mouth, hallucinations, increased
>muscle tone, increased urination, insomnia, involuntary movement (jerky
>motions), lack of appetite, memory loss, nasal inflammation, nausea,
>swelling, urinary tract infections, vision abnormalities, weakness
>
>Less common side effects may include:
>Decreased sex drive, delusions, difficulty swallowing, fever, general
>feeling of illness, impotence, inability to hold urine, muscle spasms or
>twitching, pneumonia, skin disorders, thinking abnormalities,
>uncontrollable restlessness, unfounded suspicions, weight loss
>
>Rare side effects may include:
>
>Abnormal ejaculation, abnormal heartbeat, agitation, blood clots, blood in
>urine, blood circulation problems, convulsions, difficult or painful
>urination, enlarged abdomen, eye disorders, heart attack, heart problems,
>joint problems, lung problems, mental illness, muscular problems, prostate
>problems, severe chest pain (angina), thirst"...
>
>Charlotte
>
>
>---------- Erin Codazzi <[log in to unmask]> writes:
>
>From: Erin Codazzi <[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: doctors
>Date: Mon, 20 Jan 2003 07:23:49 +0000
>
>Thank you Charlotte.
>
>Her doctor was adamant about not putting her on Sinemet, which I agree, is
>the right approach. However, he's too quick to dismiss the other issues she
>has, including the pain and stiffness in her spine and feet. She has also
>recently become very short of breath. Her internist had a series of heart
>and lung tests performed, which unfortunately didn't uncover anything. He
>and the neuro concluded that she must be anxiety-ridden. That is very
>unlike
>my mom. I am convinced that this is PD-related or a side effect of the
>Mirapex.
>
>I've read about Baclofen and have wanted to her ask her neuro about it. I
>bought her an herbal supplement called Cat's Claw, which is supposed to
>help
>with osteoarthritis, if that's what she really has. She is reticent to try
>it however.
>
>I had not heard of a Movement Disorder Specialist prior to your email and
>Kathleen's. I will investigate this for her and I look forward to receiving
>more information about the non-profit organization.
>
>Thank you.
>
>erin codazzi
>
>
>
>
> >From: Charlotte Mancuso <[log in to unmask]>
> >Reply-To: Parkinson's Information Exchange Network
> ><[log in to unmask]>
> >To: [log in to unmask]
> >Subject: Re: doctors
> >Date: Mon, 20 Jan 2003 06:30:28 GMT
> >
> >One thing I'll say in her Drs. favor--he/she didn't automatically put her
> >on Sinemet, but is starting her out on Mirapex. This shows, in my
>opinion,
> >an up-to-date approach. Garden variety neuros usually do the knee jerk,
>one
> >size fits all thing, and prescribe Sinemet, often in too large a dose.
> >Still, you might want to hear what a Movement Disorder Specialist has to
> >say.
> >
> >Fatigue is very common in PD and as a side effect of PD drugs. And
>Mirapex
> >can pack quite a punch in many people, especially at first. Sleepiness,
> >and a sudden urge to want to sleep often happens with this drug, and she
> >has just lost her husband and been told she has a progressive disease.
>And
> >as far as pain goes, this is very common in PD, though it's hard to
> >convince Drs., even PD specialists, that it is not just arthritis. It
> >could be dystonia. It is possible that Baclofen or quinine might help.
> >Some people take quinine for cramps in their legs or feet, some, as I do,
> >take Baclofen, which has helped me a great deal. It is one of the more
> >difficult symptoms to pin down, and many top PD specialists just don't
>buy
> >it--that is, that PD is directly related to these painful episodes. They
> >don't believe what hasn't been proven or taught to them. And it seems
>that
> >the elderly get this attitude most of all.
> >
> >There is a very fine PD non-profit organization in Oregon that deals with
> >issues for patients and their families, and PD advocacy of all kinds. It
> >used to be called Will-Cope, and I can't seem to locate it's new name and
> >number. I have a friend who is involved with it; I'll send her an e-mail
> >and get the org's name and number for you; I'm sure they can get the info
> >you need for your area.
> >
> >I'll get back to you,
> >
> >Charlotte Mancuso
> >
> >
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