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  • Posts

    • Thanks lenamegan and LAD!!  
    • Hi All, My husband has the Duodopa Pump which I wrote about at length, in the 'Open Forum' Section under 'Duodopa Pump' back in October. Just like to add to the discussion here that it is now 17 months since he's had it fitted and he is showing no signs of adverse effects, or progression of the PD at this stage. His Neuro is extremely happy & he's due for his 6 mthly check up next month.  His energy levels remain high and I think the amount of physical work he does around the property (thanks to the pump) helps keep him ahead of any progression in the disease. (If it was called exercise, he wouldn't do it ).  Having said that he still has to take care not to over-do what he does, or he pays for it the next day with exhaustion, and needing to use the extra doses from his pump for breakthrough tremors. He also still has shivering and sweating issues depending on the temp, but copes with these, and getting out of bed during the night is a bit slow but he does it alone (though he's off the pump by then). He still takes 1-2 Madopar Rapid 62.5 and 1 Sinemet CR 200/50 at night when the pump is removed, and takes no other medication whatsoever - but does take some basic vitamin/mineral supps. As mentioned in the earlier post, he was diagnosed in 2009 after 2 yrs of investigation, and eventually all oral PD meds became ineffective - bad reactions from anti-agonists, and in the end barely no 'on' time with the L/C. He was a total mess of tremors, toes curling, needed assistance with dressing, couldn't drive, body hunched over, shuffling movement, left arm still, stiff limbs, depression - the typical PD stuff. Now I can't keep up with him and the pump has given him back his pre-PD life. He doesn't have any dyskinsia even though his main medication all this time has been L/C. I know of one person who has severe dyskinsia and is in the process of discussions with his Neuro. He has had DBS in the past. Unfortunately, don't know yet what the outcome was with his Neuro. Will post more when I hear. Hubby was at the stage where the only option left was DBS and it would have been about 12 months going through the raft of specialist interviews to see if he was a suitable candidate. The pump was relatively new here at the time and was offered as a possible, immediate relief option. In his case a total no-brainer. He was also not wanting to go down the DBS route but would have for some relief from his symptoms. We would recommend that anyone who has the opportunity to try out this pump to have a go. If, after trying it and you find it not to your liking, it can be removed by a simple medical procedure. My guy would fight to the death to stop anyone taking it from him.  And, I don't know what the service is like in the US, but here in Australia the company offers fantastic service and advice both technical and medical (PD nurse) by phone and periodic contact. I hope you all continue to enjoy a long and happy experience with your pumps.  
    • May want to post this in ask the pharmacist forum...may get more feedback 
    • I tried Mucuna but it made me to jumpy at a high enough dose to have good benefit.  Low dose 400mg did help some  but when I increased to 800mg my anxiety flared. It does help support dopamine cells though and is safe to take IMO.  There are a few pub med studies on it if you search which shows it is effective for PD and safe.  If it is of interest here is my supplement protocol which has really helped me (put together with help from two amazing naturopaths who treat just PD)
    • Impressive! Keep it up!  LAD 
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