Great advice for us all, more power to you
cheers
Haroon Basheer

*sent via  my wireless  handheld

-original message-
Subject: Re: question re dosage
From: [log in to unmask]
Date: 12-01-2009 12:04 pm

Taking the drugs also risky-
I'm on Mirapex & the obsessive thoughts are getting to be a pest, also a bore,
plus insomnia - but that may be the menopause (at least hot flushes save 
haeting0.

Quoting Maureen Potts <[log in to unmask]>:

> Do not ever, and I mean ever, go off your medications without telling your 
> doctor.  You can develop what they call Neuroleptic Malignant Syndrome, 
> where your blood pressure goes sky high, you pass out, and worse.  Some die.
> 
> Drugs for Parkinsons are pretty strong stuff.  You are taking your life in 
> your  hands by not being more disciplied about your medications.  You are 
> tempted to phase out the drugs because you feel better.  But it is the drugs
> 
> that are making you feel better.  Trust me, the day will come when you will 
> be infinitely grateful for those drugs.
> 
>  My brother bought me one of those big plastic pill boxes with compartments 
> for every day of the week and for a daily schedule.  It helped me remember 
> and to take my drugs on time.  You have  to commit to counting and sorting 
> for an hour or so a week.  It is well worth it.
> 
> Please dont stop your meds without medical advice.  Just remember, 
> Neuroleptic Malignant Syndrome.  Sounds awful, and it is.
> 
> Maureen Thompson (I have been around, just quiet)
> 
> 
> 
> ----- Original Message ----- 
> From: "Murray Kastner" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, January 10, 2009 10:24 AM
> Subject: Re: question re dosage
> 
> 
> >I am afraid I am the laggard of the group and the spacing of my  dosages 
> >has been all over the clock. I have been prescribed 25/100  Sinemet three 
> >times a day along with 75 mg Mirapex and 5 mg  Selegilene. I also take 
> >Flomax CR (1x Day)and Novo oxybutnin (1x day).  1 mg  Folic Acid, calcium 
> >2x daily. i am very erratic in taking the  meds, and try to keep to three 
> >times a day but no fixed times. And I  usually forget them altogether one 
> >to three times a week.
> >
> > I am sorely tempted to give up the meds completely, or to phase them  out.
> 
> > I think I have read that there are cases where the meds  contribute to the
> 
> > symptoms rather than alleviate them. I also have  osteoporosis for which I
> 
> > have just completed an 18-month program with  Eli Lilly's new drug, Forteo
> 
> > wherein I injected myself every morning.  This past week I took a 
> > bone-density scan and Wednesday I am hoping to  get the results, expecting
> 
> > 20-25% increase in density. This may allow  for spinal surgery. which I am
> 
> > not too crazy about.
> >
> > My worst symptoms are camptocormia which means I cannot straighten  myself
> 
> > when standing or walking. I can lay down perfectly straight and 
> > semis-straight when sitting. But the camptocormia has brought on 
> > shortness of breath, especially if I walk without a walker. It has  been 
> > suggested that my bent-over posture has been crushing my lungs  and so I 
> > also now have a 'puffer' 3x a day.
> >
> > I am growing weary and am tempted to give up all the meds and see what 
> > happens. Before I do that I will enquire as to the consequences. 
> > Fr'instance: can the PD and accompanying symptoms get worse with no 
> > returning to the meds to regain the balance I have now?
> >
> > I will discuss this with my neuro at my next visit -- scheduled every  4-5
> 
> > months. since 1998 the only deterioration I have experienced is  the 
> > damned camptocormia, apparently a rare condition which my neuro  (one of 
> > two movement disorder specialists in Montreal) has seen only  in 3-4 
> > others. He feels it may have been triggered by a fall I took a  couple of 
> > years ago which crushed 1-2 vertebrae when I landed on my  coccyx.
> >
> > Phew! Thank you for bearing with this. I have probably left out even  more
> 
> > meds, like the anti-depression pills (150 mg) bupropion SR.
> >
> > Every once in a while I wonder whether I really have PD or whether it  is 
> > something with similar symptoms.
> >
> > Anyway I think I have rambled on enough and will appreciate input from 
> > anyone in a similar situation.
> >
> > Murray
> >
> > Ray,  I received the pins and they are already being displayed all  over 
> > Montreal. Thanks!
> >
> >
> >
> > On 6-Jan-09, at 6:33 PM, rayilynlee wrote:
> >
> >> I recently got some carbo/levo from my neuro to try once more.  When  I 
> >> first tried it it helped but never again even tho I took it for a  year. 
> >> He gave me 25/100 3 times a day and I've forgotten how you  space the 
> >> dosages.  Do you take it at night or just daytime?  I've  forgotten.   in
> 
> >> 2003 I had DBS and tried  Comtan and Stalevo  afterwards but it didn't 
> >> help.
> >>
> >>
> >> Ray
> >
> > ----------------------------------------------------------------------
> > To sign-off Parkinsn send a message to: 
> > mailto:[log in to unmask]
> > In the body of the message put: signoff parkinsn
> > 
> 
> ----------------------------------------------------------------------
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> 




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