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

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