I am new to this forum


#1

big grinHi I'm Dollymaz....I am 60 years old  Hairdresser and  was diagnosed in Feb 2013 though it seems i have had this for approx 5 years. I noticed the usual symptoms, right hand stiffness and rigitity in the arm and neck, twitching thumb, frozen shoulder, loss of sense of smell,weakness in legs,shaky, woozy heads etc. i had tests for lots of things and unfortunately it was PD. I had an RTA 20 yrs ago and had 3 fractures to the pelvis consequently i have enduured back, neck and shoulder pain since but i have found this has got worse. Could it be the PD? i do exercises regularly given to me by the Physio and have done line, Ballroom and Latin for approx 7 years certainly not well, but i have enjoyed what i have been able to do. This has become more difficult as has walking any distance.I was put on Requip XL which i take at night when i took it in the morning i was away with the fairys for hours! as the rigiitity in my neck and tremors were becoming worse i was recently given co-beneldopa 12.5/50 capsules and told to reduce the RequipXL back from 14mgs to 10mgs a day. To be honest i am now more shaky and neck spasms, will this improve after time on these meds ? i am not due to see the Neuro until March. I really look forward to hearing from anyone who also feels confused about this disease as i do. Thanks so much.


#2

Hello Dollymaz, I have only recently joined the forum myself however I have been a regular viewer of the posts but felt I needed to join after the problems encountered with my mother. She is the PD sufferer and I am her carer along with my dad.

Unfortunately this is a very personal disease and everyone's experience is different. I have worked as a secretary in the NHS  for over 24 years in orthopaedics however since my mothers diagnosis we have recently moved offices and I am now working across the corridor to my mothers PD consultant so have regular little discussions with him regarding my mums problems. During these conversations and planned consultations it comes across to me that everyone is so different that even the consultants are at a loss sometimes as to what course of action to take, unlike orthopaedics where there is a specific problem and an op or course of therapy that would sort out the problem.  Even with my access I feel that there is no straight forward answer to the multitude of problems my mum has, however she does have several other medical problems as well as the PD so the actual cause is very difficult to workout.

it seems to me that you need to try and gain as much information as you can from here, or other trusted sources yourself, regarding your specific problems, and discuss them with your PD consultant.

unfortunately my mum hasn't been on any of the meds that you have mentioned however I am sure that once you see your Consultant he/she will be able to advise you on the best course of action. Maybe someone on here will be able to give you some more advice regarding your specific problems and the meds you are on, however my mum does suffer from neck stiffness and pain.

Good luck with your appt - I would always telephone them to see if it can be brought forward or if you could be put on a cancellation list, if you are available at short notice. If it is your first appt with the PD consultant March seems a long time away to me.

Sharon 


#3

big grinHi Sharon......i appreciate your reply, thankyou so much. I understand from my Consultant that every case is different and i guess that is why it is so difficult to get meds just right. I wish your Mum well, and i will give these meds a bit longer to see if things improve, if not i will certainly be ringing the nurse. thanks again 


#4

I am also new to the forum having been diagnosed last November, I also take requip but I take 1mg three times daily and it certainly makes me feel drowsy although it is getting better. PD is a very individual journey no two persons experience will be exactly the same, the meds will help given time unfortunaetly anxiety makes the symptoms worse it helps having someone to talk to pd nurses are brilliant and are very helpful.


#5

 

Hi Dollymaz

I was DX with PD three years ago. My symptoms started off with slower movements and dragging of the left leg and speech problems, I thought I had had a mini stroke. Then I started with the tremors to my left hand which then went to my leg also. Saw my neuro after I had had a MRI headscan and was told I had the dreaded PD. Didn't go on meds till August 2013 when my symptom got worse, was given 2mg Requip XL one tablet per day, then it was raised to 4mg month later still on just one tablet per day. No side effects that are worth speaking of. Hope you get a positive result with your meds as I have, I can only look to the future now.

 

Regards Sheila


#6

HI SHEILA....GOOD TO HEAR FROM YOU AND TO KNOW THAT YOU HAVE GOT YOUR MEDS SORTED WELL. i HAVE PERSEVERED WITH THE 10MGS OF REQUIP XL PLUS THE CO-BENELDOPA 3 TIMES A DAY AND SEEM TO HAVE TURNED A CORNER (AT LAST) I SHOULD NOT SPEAK TOO SOON BUT I DID CHAT TO THE NURSE THIS WEEK AND SHE WAS PLEASED THAT I HAD MORE MOVEMENT IN MY HAND AND LEGS FELT STRONGER. SHE STILL THINKS THE REQUIP ARE WHAT IS CAUSING MY WOOZY HEADS AND WILL PROBABLY REDUCE ME TO 8MGS ON MY NEXT APPOINTMENT, GOING TO SEE HOW I GO MEANWHILE. THE NECK SPASMS HAVE EASED A BIT ALSO AND TREMORS, THOUGH SHE EXPLAINED THAT IF YOU GET ANXIOUS, EXCITED OR ANYTHING THAT CAUSES MORE ADRENALINE THEN THE TREMORS GET WORSE. SO MUST KEEP CALM AY? I TOLD HER MY ENERGY LEVELS HAVE INCREASED ALSO AND SHE WAS PLEASED BUT EXPLAINED THAT I SHOULD STILL PACE MYSELF AS TRYING TO DO TOO MUCH IN ONE GO WILL MAKE ME FEEL TIRED QUICKER THAN IT WOULD HAVE DONE BEFORE THE PD. KEEP SMILING....AND I AM REALLY PLEASED FOR YOU...BEST WISHES


#7

Hi Dollymaz, I am on Requip 3mgs daily, I was only diagnosed last November so I am still on quite a low dose, I am dreading any increase as I have had quite bad side effects. Are you coping on the dose you are on and are the side effects bad?


#8

Hi Dollymaz

I am taking the same drugs as you but 8mg Requip XL at night and 100/25mg Madopar 3 times a day.  I was diagnosed in May 2012 but feel I started with PD about 5 years before.

I find that each day is different with regard to stamina levels, drug reaction and symptoms. Generally I feel much better than last year at this time in many ways.  I do agree that anxiety plays a big part in how I am feeling and try my best to not over react to stress and keep exercising.  I am finding my walking is sometimes quite a struggle but persevere with a dog walk every day but the length does vary.  I have also found that Pilates has been a great help. 

I am sure you will find the right combination soon and then be able to adjust what is needed as time goes by.

This every changing condition is very challenging but try to keep active and most of all keep smiling!

Best Wishes

 

 


#9

HI CANDY ....LIKE YOU I STARTED ON A LOW DOSE OF REQUIP XL AND FELT LIKE I WAS AWAY WITH THE FAIRYS FOR SEVERAL HOURS AFTER TAKING IT ALSO THE NAUSEA WAS AWFUL, BUT THE RESTLESS LEGS STOPPED STRAIGHT AWAY WHICH WAS FANTASTIC AS I HAD NOT SLEPT PROPERLY IN YEARS. i CHATTED TO OUR LOCAL PHARMACIST WHO KNOWS ME AND MY SON WHO IS A PHARMACY TECHNICIAN AND THEY BOTH AGREED THAT TAKING IT AT NIGHT INSTEAD OF MORNING MIGHT BE BENEFICIAL FOR ME. I MENTIONED IT ALSO TO THE PD NURSE AND I HAVE NEVER LOOKED BACK AS I FIND I NOW SLEEP THROUGH ANY SIDE EFFECTS THAT THERE MAY BE. I HAVE TOLERATED THE DRUG PRETTY WELL BUT THE GOOD EFFECTS WERE NOT LASTING AND THAT IS WHY AFTER REACHING 14MGS A DAY MY NURSE HAS NOW INTRODUCED CO-BENELDOPA 50/12.5 THREE TIMES A DAY, AND AT THE SAME TIME HAS REDUCED MY REQUIP BACK TO 10MGS. AT THE MOMENT I AM FULL OF COLD BUT DESPITE THAT MY ENERGY LEVELS HAVE INCREASED AND I FEEL MORE POSITIVE, SOMETIMES I DO JUST HAVE A GOOD CRY AND HAVE NO IDEA WHY!!! IS IT PART OF THE PD (OR JUST BEING A WOMAN)!!! I WOULD NOT WORRY ABOUT INCREASING YOUR REQUIP XL CANDY IF YOUR NURSE THINKS YOU SHOULD. NEVER WORRY EITHER ABOUT RINGING YOUR NURSE FOR ADVICE THAT IS WHY THEY ARE THERE AND UNDERSTAND, I RING MINE IF I WANT REASSURANCE AND IT REALLY HELPS. I WISH YOU WELL CANDY...TRY NOT TO WORRY, WE ARE ALL HERE FOR EACH OTHER.big grin


#10

HI POLLY M....GOOD TO HEAR FROM YOU AND TO KNOW HOW WELL YOU ARE GETTING ON WITH YOUR MEDS,  ALSO THE EXERCISE MAKES A BIG DIFFERENCE DOESN'T IT? I WAS DRAGGING MY LEG A YEAR AGO, SLOW,STIFF AND GENERALLY FELT VERY UNWELL. I HAVE TRIED TO KEEP UP WITH MY DANCING AND WALKING OVER THE MONTHS AND THAT HAS DEFINITELY IMPROVED, NOT ONLY THE ENERGY LEVELS BUT I HAVE ENTHUSIASM AGAIN WHICH HAD STARTED TO WANE, DID YOU FIND THE SAME? I THINK GETTING GOOD SLEEP (FINALLY)  REALLY HELPS AS WELL. AS I AM COMING UP TO THE TIME TO TAKE THE CO-BENELDOPA I NOTICE THE TREMORS AND NECK SPASMS START TO RETURN A LITTLE BUT THE MEDS SEEM TO BE SORTING THAT OUT NICELY. YOU ARE RIGHT ABOUT STRESS THAT REALLY THROWS A SPANNER IN THE WORKS DOESN'T IT? SO WE MUST "KEEP CALM" smile AND THE PILATES IS IDEAL FOR THAT...ALL GOOD WISHES big grin


#11

Thank you for taking the time to reply Dollymaz, I find the drowsiness really hard to cope with, Maybe having a tablet once a day might be the answer and then like you say if you take it at night you sleep through the side effects, At the moment I take requip 3 times a day, I will certainly enquire to see if a once a day dose would be beneficial, I am so fed up with that awful away with the fairies feeling and struggling to stay awake, I will get in touch with the PD nurse and find out, Will let you know, Thank you for the advice.


#12

HI CANDY....I TAKE REQUIP XL WHICH IS A SLOW RELEASE TABLET AND SO ONLY NEED TO TAKE IT ONCE A DAY, AND THAT IS WHY I TAKE IT AT NIGHT. MAYBE YOU COULD DISCUSS THIS WITH YOUR NURSE, PERHAPS SHE WILL CHANGE YOU OVER TO THE SLOW RELEASE VERSION IF YOU EXPLAIN HOW WOOZY YOU ARE FEELING DURING THE DAY....THAT IS A ROTTEN FEELING AND NOT ONE THAT YOU SHOULD HAVE TO PUT UP WITH.....I'D BE INTERESTED TO KNOW HOW YOU GET ON...AND YOU WILL FEEL BRIGHTER HONEST....BEST WISHES


#13

Hi Dollymaz, I will certainly find out if Requip XLwould be suitable for me, I will get in touch with my nurse and will let you know, Take care Candyxx.


#14

Hi Candy....That is great, i wish you well, keep in touch lol


#15

Hi Dollymaz

Just read you profile, and can relate to what you say about socialising, I too tend to shy away from it, especially when going for a meal. I tend to tuck myself away in a corner so no one can see me because trying to control my hands when eating!

I was originally prescribed Requip XL  2mg by my consultant, then when I went to the GP to have the dose increased they prescribed what I think was a cheaper version but still the slow release, but with either of them I have'nt had any side effects to speak of as I said. It has definately improved the cramps in my legs at night! I take my dose of 4mg in the morning, and also think that the slow release is best.

Regards Sheila


#16

Dear Dollymaz. have read some of your background story and profile - we do have some common ground.  Where do you live?  I am in Sussex 4 miles from Brighton.


#17

Hi Dollymaz,

Just to update you, I have been prescribed Requip XL, I am tolerating this much better and the side effects are not as bad, Hope you are ok.

                                                 Best wishes

                                                      Candyxx


#18


Hi Candy....that is brilliant i am pleased that you are getting on with the Requip XL...thanks for letting me know. Yes i am on 10mg plus co-Beneldopa 12.5/50 x3 a day and most of the time i feel pretty good on that dosage. More energy and cheerful generally. Having probs with the back end so just had a Colonoscopy seems that since having a Hysterectomy in 97 a lot of scar tissue has built up in the large intestine so they couldn't get the camera all the way round!!! hence the reason i guess why i have had the loose 2s for so long....yuk! waiting for another appointment now. Hope you carry on improving with the Requip Candy...........warmest wishes

Dolly xx