This may be useful with regards to the difference between parkinsons and parkinsonism
http://www.parkinsons.org.uk/content/types-parkinsons-and-parkinsonism
Hi Sheila, I think there is nothing wrong with GPs and anyone in the NHS trying to save money and go for the cheaper generic option as long as it does the job and does no harm. There is often no difference between a branded drug and its generic counterpart. I started years ago on Mirapexin , but during this year the dispensary has switched from Mirapexin to (generic) Pramipexole and I have not noticed any difference. If I had and it was a negative outcome, I know I would have been in my rights to ask for the Mirapexin prescription to be reinstated as I had been doing well on it before. Money saved is badly needed for new drugs that come on the market and , who knows, I could benefit from this too.
Hi Shelia and other users
Thank you for the help i will print of and make him take it to next appoinment i have always said there was something else with his parkinsonism
well what a frustrating day it has been , i mentioned in a previous post about the problems my mother has been having getting her medication, well after having my mother on the phone today in tears because she felt so awful it was about time i went in with all guns blazing , my mother had previously been told she had to wait for her new prescription before she could get stronger Sinemet that her geriatrician had prescribed for , my mother can at times be more than a little confused
i phoned her geriatrician secretary who gave me the full list of medication my mother should be now taking which were as follows
1x sinemet 125mg at 8am, 1xsinemet 62.5mg at 1pm, and 5pm and 1xsinemet 125/MR at bedtime for the next two weeks , then two weeks later she replaces the 1pm with a 125mg then replaces the 5pm with a 125mg at two week intervals so she is gradually going on to the 125mg whilst taking the MR at bedtime , now my mothers gp issued a prescription today for only sinemet 62.5mg when they had clearly been informed weeks ago of the med changes when i phoned up her gp surgery i was told they had been informed of her medication changes but i would have to speak to the prescription clerk who was not there till tommorow regarding the tablets that were sent
, my main concerns are that my mother can get so confused that there is no way she is going to dose herself correctly over the next few weeks , she lives in a care home and she is left to self medicate , i have raised my concerns with her parkinsons nurse who is going to try get her a medi pack so it is easier for her to get her tablets correct
frustrated.com
Shelly, I'm so sorry you're having to go through so much grief and frustration for something that should be so simply provided. I really can sympathize. When my mother lived in her own home as her confusion was worsening (about age 90 onward), we constantly worried about her medications. Once she was in the 24-hour care facility, we kept a close eye on things at first, then learned to trust the conscientious staff there. But when the staff somewhere doesn't cooperate fully, problems begin. I do hope the prescription clerk and the PD nurse can get everything sorted out tomorrow. Good luck!
HI J of Grey
Thank you for that , i have again today had my mother on the phone saying the care staff were going to take her pills off her and were in the process of calling a doctor to her as they thought she was over dosing so i have phoned up the care staff and informed them of the proper medication that my mother should be taking
It certainly has been a rough couple of days as all the stress of my mothers problems have heightened my symptoms as both my mother and i have Parkinson's , but hopefully things are fully resolved now with the help of the Parkinson Nurse .
Good to know that the Parkinson nurse stepped in. The more I hear from all of you in the UK, the more convinced I am that those specialized nurses are the real core of the program for treating PD patients there. I hope your next days will be less stressful. When I was taking care of my terminally ill husband, I know my own symptoms worsened, too. But in the 19 months since then, they have receded again. I wish you the same sort of recovery; it is not selfishness, I think, to concentrate on our own bodies when we have PD.
Twilite: I was diagnosed as having either PD or Parkinsonism about 17 yrs ago. My symptoms were: lack of energy; dragging of left foot,; left arm did not swing whilst walking; muscle cramp in left leg; gross sweating; frozen right shoulder. In order to check his diagnosis the consultant prescribed a steadily increasing dose of Sinemet in order to show that my problem was a lack of dopamine in my brain, due to the gradual death of a significant fraction of my dopamine-producing brain cells. The dose of Sinemet was gradually increasd to try to find the .level at which it restored my walking to normal. Unfortunately this did not happen; the only change was that I felt more vigorous. This failure to respond to Sinemet seemed to incline my consultant to feel that I might have Parkinsonism.. However I think he still believed that I had PD, as my main symptoms were limited to movement difficulties. ( I didn't |have rapid deterioration of multiple bodily functions which seems to be a feature of Parkinsonism. I think that this is why it is sometimes called Parkinson's Plus).
After seeing that my symptoms were progressing slowly and were largely confined to "movement" he told me that he was very confident that I had PD rather than Parkinsonism. I believe that consultants often find it difficult to distinguish between PD and Parkinsonism although the latterseems to involve a poor response to L-Dopa and fairly fast deterioration of multiple bodily functions.
NOTA BENE I'm not medically qualified so PLEASE READ THE RELEVANT PDS INFORMATION LEAFLET; THESE LEAFLETS ARE EXCELLENT.
PLODDER
Regarding PD or Parkinsonism i attended a research network event and the speaker told us no one can be actually be confirmed as having PD as the only accurate test is done post mortem.
wow !
Ooh, that's a gruesome thought, Dexon, but most likely true. Just yesterday I was a guest at Oregon Health Science University for a lab tour conducted by one of the Parkinson Center's research doctors. Although the main topic was the study of alpha-synucleins, Dr. Unni mentioned in response to a question that there are about 17 diseases similar to PD in symptoms, which are grouped under the name "Parkinsonism." For me, that was the clearest definition yet.
yes i was reading something about donating your brain to a brain bank for research when we die . that does not appeal to me but i am doing my bit for research , because both myself and my mother have PD and my maternal grandfather had dementia my consultant asked if i would be interested in going to see a neurologist who had a special interest in the genetics of Parkinson's
Thank you everyone has anyone had the DAC SCAN cause partner swears this is the answer to everything
DatScan will test your brains ability to transmit Dopamine. If this test is available in your area you may have to go through some other tests before this is offered. It is expensive and many trusts don't offer it, luckily mine did and confirmed my diagnosis.
Richard
Hi,
I too had a datscan after having an M R I and blood tests to rule out other things,although I was told right away by the consultant that I likely had P.D. The Datscan confirmed this.
Anne D
only MRI in my area no DAT scan
Hi Shelly65.
Re your previous post about donating your brain for research, I heard something about that and I was quite interested in doing it, because at the end of the day I intend to donate all my other organs, but then someone told me that they send someone from the "brain bank" to interview you to check that your brain is suitable for them! I don't like the sound of that - imagine how you would feel if you failed the test and were rejected because your brain wasn't good enough!
On the subject of DAT scans, they don't do them in my area either because of the cost, so I've never had one, but my PD nurse said that they are inconclusive anyway. And the neurologist who DXd me confirmed what Dexon's post says about the only accurate test being post mortem - the neuro's exact words were: "The only way to be sure if it's definitely PD is to take out your brain and cut it up"! (Very sensitively put - nice bedside manner, don't you think?!)
Hi Kathy
i read about it on the PUK site here is the link if it is of any interest
http://www.parkinsons.org.uk/content/parkinsons-uk-brain-bank,, i may be stating the obvious here but once your dead does it really matter how good your brain was or am i having a blonde moment
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Shelly,
Obviously I'm well aware that once you're dead it doesn't matter how good (or bad!) your brain was - I just found it amusing to think of the "brain bank" assessing people to see if their brains were good enough for them. It sounds like something from a bad sci-fi film or something,
Sorry - I just thought that with that sense of humour of yours that you've referred to on other threads, you might find it funny too. Apparently not!
Obviously my sense of humour is a bit different from yours! Thanks for the link anyway - I'm sure it will make interesting reading.
Kathy 
Hi Kathy
yes i did find it amusing and my reply was meant in a equally amusing if somewhat sarcastic way towards the people that make the some what laughable rules about meeting the criteria for donating your brain i do apologise if it came across in any other way