Hi there i am currently taking madopar 250mg every 2 hours and now become imune to them and going on to apo go soon, and been given the option of DBS or duo dopa can anyone tell me what they are like and how effective they are as get she shaking every 2 hours at the moment and geting pretty fed up with it now ,thanks
Hi, I had DBS a couple of months ago and it's already had an incredible impact for me. I feel so much better already and my confidence has returned in spades.
I'll PM you my contact details if you want to discuss in more detail - more than happy to chat.
I had DBS just over 12 months ago. I was taking 200 mg of Stalevo every 3 hours, 4-5 times a day, but it was only effective for 1 hour. I also had Sinemet CR 250 mg at night. Now I take 50 mg every 4 hours up to 4 hours a day. That is a reduction from over 1000 mg a day to 200 mg! I now do not experience any "Off" time, back working full time and at least the next 5-10 years of some quality life ahead of me. I thoroughly recommend it, if you can afford it. Going the Duodopa route will probably work OK, but you will still have an ongoing need for high levels of medication to keep you going. Whilst DBS is probably more intrusive intially, I believe the use of Duodopa will be more maintenance intensive over the longer term. I would consider the use of Duodopa as a last resort type measure. Any further details you can PM me.
Is there an upper age limit for DBS? Perhaps the posters would be good enough to post their age.I think I read somewhere that after 70 the results were not great. Ability to with stand the operation is of course important, but given general good health apart from Parkinson's would DBS be considered in ones mid 70s?
Sorry, I usually put this kind of background info in, I forgot this time for some reason. I am 50 was diagnosed at 41. My Neuro and the Neurosurgeon told me I was an ideal candidate due to my age and otherwise relative good health. I am unsure as to an upper age limit. In Australia I have seen people a lot older than me, who were much worse off than I was have the procedure with some amazing results.
Many thanks for your reply and i am at your similar high drug levels to be on for such little time and you have given me some hope for the future and ill pm you soon
Hello out there this is my first post and I am not too sure what I'm doing but here goes anyway. I am 65 years old and have been diagnosed for 7 years. I have read the post about dbs and duodopa and am very hopeful that when the time comes I will be able to take advantage of these medications. I am horrified to think that this would not be possible because of where I live or the GP is able to overide the advice given by a neurologist. It would be useful to know what the policies are in various local health authorities.
Hello Jellylegs, I'm in a similar situation that you mention, the postcode lottery.
Ive been dx for 11 years and am quickly running out of meds that I can take. My neuro recommended that I start on the apomorphine pen, however in order for that to happen my GP needs to sign up for 'shared care' with the hospital, he has refused....and until this happens I can't be prescribed the apomorphine. Ive written to my MP who has contacted the PLC, they called me and said that they were investigating the matter but that was over two weeks ago and I've heard nothing back from them. I had an appointment last week with my neuro who told me that she has written to my GP and had no reply and called a few times only to be told he isn't in the surgery. In the meantime I shake constantly!!!!!
I've also heard of other pwp having their meds changed from the branded type to a generic type and often the generics don't work. I'm fairly sure that things will get worse as the financial squeeze worsens. What the future holds for us is anyone's guess.