Thanks BB.
Thanks BB. Not sure when starting yet as shoulder op keeps being moved and don't want to have to deal with two things at same time if that makes sense. If op ends up in new year then I will def start PD meds. as advised by neuro consultant. x
Thank you Frances. Will see what they suggest.
A couple of thoughts on the question of meds
Judging by discussions on the forum over the years there are many different views on medication regimes but a few principles are pretty common. In general you will start on a low dose which ideally will be just enough to control your symptoms. If and when things progress you will move to higher doses or more powerful drugs.
Rasagiline is commonly used as the first drug and some people stay on it when they start other drugs. Selegiline is a possible alternative to Rasagiline but I think its not that common in the UK.
Dopamine agonists are often used as the second drug. Ropinirole is one example but there are plenty of others. When starting a drug like this you may start on a very low dose and ramp up over a few days or weeks. Dopamine agonists can cause obsessive and/or compulsive behaviour in some people so they need to be used with care.
At some stage most PwP will arrive at levadopa either directly or after a while on one or more other drugs. Sinemet and Madopar are two types of levadopa and they are the nearest thing you can get to adding dopamine to your brain.
You can read more about the options at http://www.parkinsons.org.uk/content/drug-treatments-parkinsons
It can be confusing when you first start on meds or change drugs or doses. Parkinson's nurse specialists can advise you and are usually more accessible than neurologists. The parkinsons UK helpline gang can help with meds advice too (http://www.parkinsons.org.uk/content/parkinsons-uk-helpline).
EF
thank you EF. It's all a bit daunting isn't it. Appreciate all the information and will look some of that up.
Leyther makes a good point
IMO we need to improve the training of our medical people and pwp need to be a part of this process.
Would the PUK be prepared to back such a programme.
I agree that we need to spread best practice among professionals. I also agree that pwp have a part to play in this. The good news is this is starting to happen. The Parkinson's UK Excellence Network aims to do that and it includes a workgroup on service user involvement.
Look here for more detail http://www.parkinsons.org.uk/professionals/about-excellence-network
EF
Thanks for response EF
I had a look at the video and the map and the idea submittal form.
The whole set up is geared towards the professionals, it doesnt seem to cater for pwp at all.
Why are there so many people involved and what on earth do they do?
There's been a lot of talk about expert patients and managing your pd and various initiatives.
What I would like to see is when I visit my neuro / pd nurse some evidence of the fruits of these labours.
Perhaps in the form of a pamphlet.
The good practices of the patients dont seem to be important:
Here's an idea! Take say 6 pwp who are doing well and 6 who arent. Have a workshop together with some professionals, spend a few days together and see if what the successful patients do can improve the lives of the others. Forward the conclusions to the professionals.
PWP do a lot of good practices that arent always known by the professionals and are denied to other pwp.
Giving these practices credibility would be a help.
L
Hi
what a brilliant idea.
I was dx 4 years ago and was lucky enough to gain lots of information from fellow pwp regarding parkinsons medication and tips regarding taking this medication (sinemet plus). Because of this, I'm in a position where I feel I manage my medication and keep it to a minimum. It works most of the time, and if it doesn't, I know why it doesn't.
i don't think there needs to be an abundance of bureaucracy surrounding such an idea. Leythers suggestion is simple and in my mind all that's needed.
Ali
x
I Agree what a damn good idea.
BB x
I have never been offered any scan of any sort and my PD has been diagnosed on the symptoms as they present themselves. Is this the same for other people? Does it depend on the area where you live and the resources available - I wonder?
I was born with a genetic condition called Microtia which resulted in an ear deformity which effects about 1 in 1000 people and I wonder if this had anything to do with me developing PD in later life. Is there anyone out there with microtia and Pd like Me?
i went to see the neuro again and he asked if id had my second scan i hadnt so he said oh well there wasnt a lot of point you coming today because you really need that before i see you again, he asked me to run throught my symptoms again which are head shaking finger twitching, stumbling , falling over some times , nose running when i eat and my hand writing becoming very small , he said he didnt they sounded like parkinson symptoms but would wait for the second scan to decide so im not sure what they are symptoms of
Just a general comment after reading old postings, which some people might find useful.
I was diagnosed over 16 years ago and recently the symptoms have become more difficult to control, no matter how careful I am or how clever the consultant. I cannot account for the unexpected periods during the day when the Sinemet does not seem to work or only work for a very short period. This is apparently par for the course.
On the forum patients are at different stages of the disease. Several people on the forum say they learn a lot from fellow patients, but I find there is too much contradictory info or it is too superficial, maybe because people could be at different stages of the disease, fall into different age groups (diagnosed at 70 or under 40 years of age is significant) or there is a wide variety in their symptoms. It is possible that eventually we will all be diagnosed as having different types of some form of a disease that falls under the larger umbrella of Parkinson's Syndrome..
My impression is that newly diagnosed patients seem to fear starting on the drugs, whereas these drugs are very effective and relatively low in side effects, especially the levodopa drugs Madopar and Sinemet. The dopamine agonists are far less popular among the neurologists than 15 years ago. Most other drugs (MAO-B inhibitors, COMT inhibitors, Anticholinergics and Amantadine) have a weaker action and produce minor improvements in relieving the symptoms. Some are better tolerated ( Rasagiline, by the way, no proof it slows down the disease yet) than others (anticholinergics like Artane) Parkinson UK has a good booklet on drugs. I would advise anyone to look among their leaflets for information first.
I never suffered nausea and take the Sinemet or Mirapxin(Pramipexole) quite happily on an empty stomach. I am lucky, I suppose. I would be a bit careful about asking routinely for Domperidone , It was never approved in the USA and is now recommended to be given for as short a period as possible as it is thought to have been implicated in a few cases of sudden cardiac death. Not a good word to end with. Sorry!
Best wishes to all, Kate
Goodness! I've been written up for domperidone to go with the madapar!!
Hi Lexi
You may never need to take the Domperidone. I didn't. I started with 3 x 50/12.5 Madopar each day. I followed forum advice to take with at least half a glass of water and eat a small plain biscuit at same time, like half a Rich Tea or Arrowroot. This helps combat nausea. So does eating small bits of crystallized ginger, really effective for any nauseous feelings at any time of day.
I expect you have read info here about taking meds half an hour before or one hour after meals. This is very important to get them into an empty duodenum. The small biscuit plan does not compromise this.
Best wishes
S
Thank you supa. Appreciate the advice x
Domperidone is the normal one that we generally get given i needed them for about 6 months then all of a sudden my system levelled out.
And they do work.
BB xx
Thanks bb. Hope you are ok x
Good morning to you all .
Hope you are all well as you can be.Ive been away for a while ,so its good to be back on my feet.
Merry Christmas
I am fine Hun, Yesterday proved to be something of a challenge for me walking home from my friends at 4.45 taking my usual route some scum bag thought he could rough me up put a knife to my throat & had the bloody cheek to call me a crippled b**** and demand i hand over my hand bag, to say he got the shock of his life is a understatement when I fought back two words set me off crippled bitch. I hit him with my stick so hard in between his legs he landed on his knees then with all the strength I could muster I brought the handle of my stick right on the top of his head saying at the time, THIS B**** BITES BACK. Then legged it away as fast as I could to my mates flat around the corner. Colin came and got me plus the necessary details were given to the police, Mr Scum Bag probably thought due to my shuffle walk I was an OAP lets hope he thinks twice before trying this again...........
I did not see his face to well as hoodie covered half of it but I will know him if and when I see him again all I need to hear is that Voice the advantage will be mine then he really will want the police to come and get him because if they don't he will find out why hell hath no fury like BB really p***** off,
What an ordeal but good on you. I'm a bit like you I think I would have fought back and to hell with the consequences. Who do they think they are? Deranged thugs I think. One year when I was driving my son home, it was thick with snow and I saw a big lad just about to bang this little lads' head on a stone wall. The car screeched to a halt. 'Hey,' I shouted' 'do you really want to kill him because you will do if you bang his head on a brick wall covered in snow.' He stopped raised his body to his full height, he was over six foot. OOO, I thought ;but not to be deterred I raised my body to the whole of five foot. 'I'm not scared of you. Ask my black belted. six footed tai kwando son he's scared of me!'
Scum bags beware - there's two of us now!
I really dont know where you could have got so much courage from but, you do if your life depends on it
Well done feisty brave lady and a Merry Christmas and a very happy New Year.