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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 > > >---------- 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 05:47:06 +0000 > >Thank you so much for your response. > >I too believe stress played a role in my mom's deteriorating condition. I >have been sending my mom to get massage therapy periodically; it seems to >give her some relief for a day or two. She has also seen an acupuncturist. >She is not keen on naturopathic routes, but I've been trying to encourage >her to try some herbal supplements I've read about. > >As for the doctor situation, this particular neurologist has impressive >credentials. Nonetheless I think we should pursue more aggressive routes. >We >live in Portland, Oregon and the Oregon Health Sciences University is known >for groundbreaking research in many areas. > >If anyone has any recommendations for doctors to contact in our area, >please >pass them along. > >Thanks again. > >erin > > > > > > > >From: Kathleen Cochran <[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 00:27:18 EST > > > >In a message dated 1/19/2003 11:56:02 PM, [log in to unmask] writes: > > > ><< My question is whether we should continue pursuing other opinions and > >trying > >alternative courses of treatment. >> > > > >Hello, > > > >In answer to your question, most emphatically yes! Has she been seeing a > >"garden variety" neurologist? If so, look for a movement disorders > >specialist, someone who really knows PD. It sounds like her treatment so > >far > >has been rather perfunctory. > > > >Your dad's death must have been hard on both of you. Stress may have been >a > >factor in the emergence of your mother's symptoms, and depression might >be > >contributing to her decline. Many PD patients struggle with depression >and > >medication can help. > > > >There are other things that help too -- exercise, massage, a healthy >diet. > >If > >you stick around on this list you'll find lots of resources, ideas, and > >support. There also is a separate caregivers' list; I don't have that > >information handy right now but I bet someone else will post it for you. > > > >Do let us know how you fare in your quest for better treatment for your > >mother. If you let us know the area where you live, maybe someone could > >recommend a doctor. > > > >Wishing you and your mother better days ahead, > > > >Kathleen > > > >---------------------------------------------------------------------- > >To sign-off Parkinsn send a message to: > >mailto:[log in to unmask] > >In the body of the message put: signoff parkinsn > > >_________________________________________________________________ >The new MSN 8 is here: Try it free* for 2 months >http://join.msn.com/?page=dept/dialup > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: >mailto:[log in to unmask] >In the body of the message put: signoff parkinsn > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: >mailto:[log in to unmask] >In the body of the message put: signoff parkinsn _________________________________________________________________ MSN 8 helps eliminate e-mail viruses. Get 2 months FREE* http://join.msn.com/?page=features/virus ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn