Statistics

Any body found any data on percentages of patients who are happy with their medication and how long they have been stable. Are we HU rebels in a minority? My neurologist claims that none of his patients have problems with Sinemet!

[jimcaster]

I'm not on medication, but am eager to know about satisfaction rates, whether through scientific studies or even anecdotal evidence randomly submitted by people on this site. Thanks for asking the question.

[ion_ion]

Good question. I'm taking only Thiamine for now.

[park_bear]

Whatever the case may be with other patients, if you are having a problem, the neuro needs to address it. His (unlikely) claim that everyone else is ok with it is irrelevant. It does raise the question if he is worth seeing.

[Hidden in reply to park_bear]

I have the impression that many contributors to HU aren’t receiving the service from their neurologist they expect. if they were everybody would be happy with their meds.

[Hidden in reply to Hidden]

On the other hand a symptom of the disease could be the desire to stay in control. Could even be a personality trait. I know the evidence is not strong for this last point.

[Juliegrace in reply to Hidden]

I agree with you that many contributors here are not being well served by their doctors. I disagree with the idea that a good neurologist who serves his/her patients well equals satisfaction with meds. A knowledgeable and caring doctor is far better than the alternative, but our med choices are still limited with many side effects and questionable efficacy.

[Juliegrace]

Having gone of meds for a year which left me 75% debilitated, I am grateful that meds (c/l) allow me to function. With almost constant dyskinesia when I am "on" that has caused damage to my joints and interferes with everything I do, I would never describe myself as satisfied with c/l and I would change neurologists if one ever told me I should be or didn't acknowledge the myriad downsides to most, if not all, PD meds.

[Niggs]

Parkies uk, Ask the Dr, Neurotalk, etc The interwebbery is awash with Pwps or their loved ones worried about medication issues. "It's like fine tuning a Ferrari getting PD meds right"

Nope, as far as I'm concerned it's like throwing mud against the wall to see what sticks !

I'm 9 y post dx and have never been pleased/impressed by any drug or drug combo's ability to improve my quality of life. As Julie rightly says, I'm also grateful the meds give me 'some' relief but that's a long way from pleased.

it would help if they stopped referring to L.dopa as the gold standard, again, grateful we have it but it rather gives those holding the purse strings the wrong impression !

[LAJ12345]

We went to see the specialist for the first time yesterday for my husband. We were pretty disappointed. He did a range of tests, asked a bunch of questions, said I agree with the neurologists assessment that you have PD. Here is a prescription. I have a heavy work load. Here is a pile of brochures explaining the meds, you can join the special gym. I’ll see you in 12-18 months. It you get worse I can add some more drugs. You will be on medication for the rest of your life. I told him we were trying some diet modifications and vitamins and exercises. He wasn’t really interested at all and didn’t ask what vitamins. Never heard of qigong. Really I don’t think he will be of any help.

[Hidden in reply to LAJ12345]

Pretty depressing and frustrating for you I am sorry about the lack of sympathy you received. However things don’t have to be that bad. You will find hope and practical advice on this website.

[Buffricho in reply to Hidden]

How to use a pen us pump

[MBAnderson in reply to LAJ12345]

I, for some reason, thought bedside manner was part of their training. It could be a very short lecture. "At least pretend that you give a rat's ass."

[Hidden]

My original question was about the effectiveness of medication and whether there was a satisfied but silent majority? Parkinson’s U.K. would have one believe that there is

[Juliegrace in reply to Hidden]

I believe there is a silent group (very possibly the majority) of PWP who do not question their doctors and go along with what they are told. I have met many PWP who don't even know what they are taking, much less the dosage or other options. Are they satisfied or just compliant? Sadly, to much of the medical community satisfaction is irrelevant. Compliance is the goal because it makes doctors' jobs/lives easier.

[MBAnderson in reply to Juliegrace]

Amen.

[Lionore]

Neurologists are trained to use only the tools provided by their training and big pharma. PD meds are only capable of alleviating symptoms to some degree with decreasing efficacy over time. That said, c/l works for me now and for many others. It’s not all or nothing. Take the meds if they give you the energy to do the real work. My neurologist, a well recommended MDS wouldn’t know qigong from the Gong Show but he does his job well. The rest is up to me.

[condor39]

Yes, I am on Prolopa, with great relief of symptoms, and on NO supplements, vitamins, herbs, notions or anything else.

[Enidah]

It's inevitable that you will hear from more people who are dissatisfied than satisfied. I take C/L - 25/100. My prescription says to take two at a time three times a day. I have never done this. I start off the day with half a pill an hour later I take the other half two to two and a half hours later I take one and then again two to two and a half hours later I take another Etc. This keeps the amount in my system pretty level and works very well for me. I really think this is a key factor; we have to be the main participants in what works. We have to be willing to take control of our care and educate ourselves and experiment till we find what works. This isn't a simple disease we have where one treatment fits all so even if our doctors also had PD they still would not have our PD.

[MylovedhasPd in reply to Enidah]

loves and agrees with your words "We have to be willing to take control of our care and educate ourselves and experiment till we find what works. " We found that my Beloved is extremely sensitive to increases in meds, so the consultant finally 'gets it' and is in agreement with a very very slow and minimal increase in neupro. I am in awe of him! I use a lot of my expertise to support Beloved and find that he is 'in the room', reasonably mobile (could be improved), and importantly constipation is banished, he doesn't get dizzy, he discusses important stuff for at least a number of hours each evening and in comparison to what life was like on pramipexole (absolutely terrible after too long being on it) life is now a dream. We have had a wonderful year since he went off it and on to neupro patch. GP is on board and helpful. Major difficulties with generic/parallel imports of neupro at one stage, but that has been heard and respected. Need I say more? Energetics has been our number one self-support and I'll answer your questions via chat message happily if you are really interested.

[Enidah in reply to MylovedhasPd]

Such a good point about starting new meds... I start them so gradually, even below with the doctor recommends. I have found this very beneficial.

[Despe in reply to Enidah]

I talked to a neurologist in Europe. He told me that the secret to success in meds is to take as little as possible.