OK Thanks again Gus I will let you know how I get on thanks.
Hi Gus,
Just a note: It is important to let your assessor know exactly what it is like living with the condition. Parkinson's is a fluctuating condition and this should be taken into account when you're being assessed for benefit but this should not mean writing only a part of the story (ie: how you are on your best day)
For more about this, see Amy's comment on PIP. There was also a question on this issue on our last Q&A on ESA.
I am new to all this and I was advised to put on my pip form what i am like on a bad day, But it got me thinking if you put down how bad you can be and then you get an assessment and you are having a good day the assessor might think Hang on you claimed you were much worse than this on your form, I am just worried that if the assessor has no detailed knowledge of PD and how unpredictable it can be, He or she may think possible fraud case! especially as it is so much in the public eye at the moment, You always see it in the papers, I am sure the assessor isn`t just going to take you`re word for it they will want to see evidence of how bad you can be.
hi ezinda ,i was lucky enough to have a information support worker from puk, who filled all my forms in & yes i sent alot of info paperwork with it. And they were happy and said i did not need a face to face interveiw,i do have lumber back & dbs aswell as pd also nerve pain ,trouble sleeping also high bp.maybe this is why i have no trouble,dear candy tell them what its like on your worse day ! not intrested about your good days ! ask your consulsant,pd nurse,gp to write letters for you its a must ! And take photos of your meds & disability aids ie grab rails if any ! good luck
Well I have now seen a very good consultant , did lots of tests on me, said it is pd. He is concerned as it has got worse so quickly. He is referring me for a ct scan soon.i have a medication query to anyone please?
after only one day of levodopa I feel very sick, lost appetite. I do have stomach problems with tablets etc , I did ask re patches. He said they are not as effective ? I am even having once a year injection for osteoporosis.
is it best to ask my GP or parkinsons nurse re medication? Patches more expensive?
thanks brenda
Hi Brenda....I am sorry the meds are making you feel poorly but i would definitely talk to your pd nurse. I talked to my GP in the beginning re the nausea after staring RequipXL and he reduced my dosage and my other symptoms got worse. He advised me afterwards to seek help from the PD nurse who is more qualified on the subject and be guided by her. So now whenever i feel a bit off i phone the nurse and know that one of them will ring me back and put my mind at rest. I was given a prescription for Domperidone for the sickness, vomiting and stomach discomfort which might be worth mentioning .Also Omeprazole for indigestion. Honestly with all these various pills now we are going to rattle!!!! as well as shake!!
I am now taking Requip XL at night which is a slow release 10mgs and co-beneldopa 12.5/50 three times a day,(which is a levadopa) the sickness eased after a few weeks and i do not need to take the Domperidone or Omeprazole now. I can't face tea still in the mornings but find Lemon and Honey in hot water is quite palatable. I have no knowledge of the patches but if the meds upset you then its definitely worth explaining to your Nurse. Good luck and best wishes
I have just had my Requip increased from 3 to 6 MG, Here we go again with the nausea and drowsiness just as I was getting used to it. We really are stuck between the devil and the deep blue sea, With meds side effects and without all the misery PD symptoms bring, Best to keep positive though even when going gets tough!
hang on in there,it will click when its right!
its like a time bomb when it happens so much relief
Hi Western
sickness and nausea is a common side effect with levodopa , i started on Sinemet last November and i was so tired , nausea , vomiting , no appetite because everything i would eat would come back up i could get up and be back in bed 2 hours later i tried every anti nausea drug going but finally admitted defeat last week and was put on to Madopar , i have to say i feel much different on Madopar much more like me my appetite is back and not so exhausted , the parkinsons nurse asked if i could be pregnant as i was being so sick 
i could not stand the taste of coffee while i was feeling so nauseous still cant stand it and i only drink coffee
Gus relief is something i really need at the moment any tips on constipation ?
Totally agree with you dollymaz my gp said it can sometimes that we end up taking more medication to counteract the side effects of the drugs we take for Parkinsons
give it time western it may settle down if not you could try asking parkinson nurse or your gp for domperidone, what dose of sinemet are you taking ?
sorry shelly65 never had any problems in that area,reg as clockwork despite taking 8 co-codomol aday lucky
Hi shelly65
So sorry that you have felt so sick on these drugs - it s horrible and I do hope you get on better with madopar.
I don t know what you ve tried for constipation but FFF has worked for me, fruit, fibre and fluid. To be more precise I eat 4/5 portions of fruit a day including dried figs and dried apricots ,drink 2 pints of water (you can have squash or diluted fruit juice if you don t like plain water) plus other drinks and eat fibre in muesli, porridge and wholewheat bread, pasta and vegetables. I know this works because if I digress from this regime I can have problems. Oh yes and I also walk 30 mins most days.
Really hope you feel better
BW
Samdog
HI SHELLY65,
Yes fibre is the key, Lots of fresh fruit and veg, Whole grain bread and pulses try having brown pasta and rice instead of white, A high fibre diet speeds up you`re digestive transit time and kick starts the bowels, Lots of fluid as well of course. Hope this helps.
Hi dollymaz and all,
thanks for your helpful info, as I am new to all this. I have decided to contact the pd nurse in the week, think more experience than the gp. Have other questions for her too.
this forum is great, as we all help each other . I am a positive person , just had a walk/ hobble with husband and stick , helps to unstiffen me !
Brenda
Hi BRENDA AND EVERYONE....YES YOU ARE RIGHT THE pd NURSE HAS MORE KNOWLEDGE THAN THE gp AND THAT IS WHAT MY DOC SAID TO ME. SO ANY WORRIES I RING HER AND IT HELPS SO MUCH JUST TO TALK SOMETIMES, DOESN'T IT? YES THE STIFFNESS IS A PAIN LIKE YOU I HAVE A STROLL AND ON GOOD DAYS DANCE! I WENT TO LINE ON THURSDAY MORNING AS I HADN'T BEEN FOR 3 WEEKS COS OF HAVING THE LERGY!!! THATS GOING AROUND. ANYWAY IT WASN'T JUST THE HOURS EXERCISE THAT HELPED BUT MEETING UP WITH EVERYONE AGAIN...I FIND THAT IS A REAL TONIC. (THOUGH I WAS KNACKERED AFTER)!
IN ANSWER TO THE OLD CONSTIPATION PROBLEM...I GUESS LIKE GUS I AM LUCKY IN THAT DEPARTMENT BUT IN THE PAST I HAVE FOUND EATING SOME LIQUORICE OR DRINKING PRUNE JUICE SOON GIVES IT A SHOVE, IN THE RIGHT DIRECTION!
LOL
TAKE CARE, KEEP TALKING AND SMILING 
Hi all and dollymaz.
yes I also swim , helps greatly and do exercises from pd book.
re the constipation , I have been helped with pd as I have ibs, much better with pd ! Always a light at the end of the tunnel .
is Pilates and tai chi good as our local group does both ?
i still write poems too ! And have a laugh when I do something silly like can't turn round !
yes it does help to talk and go on this forum of course ,all are positive . Wish it was around in my dad's time, he had pd, they had no support and exercise was not recommended
brenda
HI BRENDA....I HAVE TRIED TO SEND MESSAGES TWICE BUT THEY KEEP DISAPPEARING!!! NOT SURE WHAT IS GOING ON BUT HOPEFULLY THIS ONE WILL SEND.
YOU CERTAINLY HAVE A BUSY LIFE WITH SWIMMING AND YOUR POETRY, WHICH IS BRILLIANT, IT IS GREAT TO KEEP THE MIND AS WELL AS THE BODY ACTIVE ISN'T IT? I HAVE HEARD THAT TAI CHI, YOGA AND PILATES IS VERY GOOD FOR PD AND ANYTHING THAT HELPS WITH BALANCE AND CO-ORDINATION.
I LIKE TO DANCE AND USED TO DO MORE BUT WHEN I GET THE CHANCE I ENJOY, BALLROOM, LATIN, LINE AND SEQUENCE THOUGH A CHA CHA SORT OF SHAKES ME UP A BIT LIKE IVE BEEN PLUGGED INTO THE MAINS!!
SWIMMING IS LOVELY AS PAIN DECREASES IN THE WATER DOESN'T IT? WHERE DO YOU BUY A BOOK ON EXERCISES FOR PD? THAT SOUNDS HELPFUL. I HAD A HOME PHYSIO FOR A FEW WEEKS AND SHE WAS LOVELY AND GAVE ME SEVERAL EXERCISES FOR MY BACK AND NECK WHICH I DO EVERY DAY....SITTING AT THE COMPUTER AGGRAVATES THE ACHES AND PAINS, SO ITS NICE TO HAVE A GOOD STRETCH AFTER.
YOU HAVE A VERY POSITIVE ATTITUDE AND THAT IS IMPORTANT AND CAN HAVE A LAUGH AND YOU ARE RIGHT WE ARE SO LUCKY TO HAVE THIS FORUM AND BE ABLE TO SUPPORT EACH OTHER.
KEEP SMILING MATEY
Hi dollymaz and all
the book about exercises came from pd website free. It is good, includes a cd.
yes the water does help a lot . I walk up and down, swim a few strokes . Also go for a ' hobble' walk, stick and husbands arm.
also we have an exercise bike, sit in chair while watch tv, cycling, was 90 year old father in laws!
Still enjoying this forum ,very helpful.
brenda
Hi Brenda......Thank you for that i will look into getting an exercise book.....hope alls well with you today......best wishes
Dolly
Hi dolly
yes thanks having a good day, had a good night, helps muscles.
hope you get the book soon
best wishes
brenda