Recently diagnosed


#1

Hi , my name is Bernie & i live in Derby although i originate from Glasgow , im a 50 yr old male and was diagnosed with PD in June this year.


I am currently under the care of a Dr  and we are working together to find the right drugs for me.


I have recently switched from sinimet plus to stalevo , i am getting 4 good hours after medicating  before i start to "run down" if i can put it like that, my tablet routine is 3 times a day 8am , 2pm , 8pm, but i think i would benefit from 4 a day to reduce the space between doses .


I have joined the site mainly to raise my own awareness about our condition , but maybe later on i will become an active member of any local groups , who knows.


good luck everyone


best regards


Bernie.


 


[Edited by moderator to remove personal details]



#2

Hi Berniedoc,

 welcome to the forum.  

I was diagnosed  April  2012 age 51,  live in Aberdeen but originally from Morayshire. 

I am currently on Requip xl 8mg, half sinemet CR x 4 daily, seems to be working  for me. 

This is a good place to find out more. 

Best wishes

Bethankit

 


#3

Hi Bernie

Welcome to the forum. I am new too, recently diagnosed, and I happen to live on the other side of the planet. The forum makes good reading with lots of info. I find it much more helpful to get info from other PWP rather than the net or textbooks. Good luck with everything.

 

Scooby


#4

Hi Bethankit & Scooby and thanks for the welcome  :-)

i have spent many a Saturday in Aberdeen when my team has played there....FREEZING on a january weekend.

I also spent 5 weeks in NZ in 2001 , bunjee jumping from the ledge , kawaru bridge and over the river Nevis in Auckland , before touring both islands in a rental car , you both live in lovely places .

 

take care

Bernie.

 


#5

 

Hi

4 hours out of a dose is pretty Good Bernie.

i take Madopar at 4 hr intervals 8am,12pm,4pm,8pm and only get 2-2.5 hrs out of a dose,

I Have just started entacapone too try and boost it too 4hrs, entacapone is within stavelo.


#6

wow sea angler , i thought 4 hours was poor , i imagined i would be ok from dose to dose ,obviously i have a lot to learn , i would be bang on if i was to take them every 4 hours i think , but trial & error seems to be the way forward initially , then tweaks to timings i suppose.

good luck

Bernie.


#7

May i have mis understood what you were saying bernie? .about 4 hrs.

My first dose of the day 8 am takes 20 mins or so too kick in, then lasts for 2 -2.5 hrs or so depending i think on what i'm doing, so i have a hour or more of feeling off before the next dose is due at 12 midday,and then a repeat process till 4pm and so on. although i also take a overnight CR Madopar.

if i could get 4hrs out of the 4 hrs spacing of doses that would be ideal. i'd settle for that.

I suppose activity plays a part.


#8

sorry , what i meant was , i take my first pill at 8 am and start to feel iffy around 4 hrs later but i dont take my second until 2pm  which lasts till about 6pm then i have my last one at 8pm  then nothing until morning again , hence the feeling that a 4th dose in the day might help.

still early days for me figuring this all out , but im sure we will get there.

good luck

Bernie

 


#9

hi  Bernie tablets have a 4 hr window, first half hour they take to get in system ,then normally 3hrs ON TIME then last half hour wearing OFF PERIOD  so yes it would be good to try new times ie  8am  12pm  4pm  8pm .so when your first one is starting to wear off your next one kicks in .you  should have more on tie really as you have only been dx not even a year yet . I have very aggressive pd and the first 6 yrs maybe alot of meds but quite a normal life working ,drinking,holidays !  its only the last 3.5yrs i had to give up work ,drinking,fags, not yet a church goer but still manage a good holiday .welcome i would phone pd  nurse or gp to make sure they know you have altered tablets, as you get further done the line your pd nurse & nero let  you try different strengths & times yourself as your the only one who knows how your body feels ! to find your local pd nurse click on  support for you and enter your post code good luck ! alot of people stay on very little meds & have a very symptom free life for years .


#10

cheers for the advice Gus :-)

 


#11

wow sea angler did not realise you got 2 -2.5 hrs on thought it was less as you said your trying entacapone .ive  been on them for a week now ,they really work i was getting a on time 10-20 mins now since been on entacapone on time 1hr 15mins still not that good so have tried taking three 125mg cr spaced out on a 4-5 hr period .GREAT  results 10am to 4pm on! 6hrs then off for 1hr then back on all night ! just trying to spread out sinemet & entacapone do get less dyskinetic & reducing dbs voltage . i hope they work for you ! neat little med plastic bottles tho lol  all the best mountain bike arrives monday cant wait to get out.youtube parkinsons riding a bike


#12

no worries berniedoc  ,  what work do you do ! maybe get in touch with pd support worker they will help you get benefits & they know how to fill paperwork in for you!


#13

 

I'm so far tolerating the entacapone Gus so that's good news, i seem too pee Tango now though lol, And yesterday was a very stressful day with so much too run about and do i think i over did things in the process i think i have done something with the tendons in my arm, from the tip of my fingers too my elbow it is painful too pick up & use things or stretch my hand out straight. running before i can walk perhaps.

So i'm not too sure of the benefits just yet if i get uptoo a hour on top it'll be a bonus if that's how it works?. small steps big gains i guess.


I'll have too find a use for the little pots??. i have a mountain bike doin nothing i think i'd need stablizers too use it lol.


#14

sea angler,

side affects i am having from entacpone very little urine changed colour & take it  easy when getting up & down dizzie spells


#15

HI again getting my new cooker charge 2 2015 mountain bike monday funny thing is i can ride a bike like nothing wrong ! have you seen that bloke with pd youtube parkinsons riding a bike hit it on the nail tango !


#16

Not sure how much I can add to the conversation. I am on Madopar 125g just three times a day. I have good days and bad days depending on how much I do. If I do too much one day then the next day is usually bad. I sometimes find myself looking at the clock to see when I am next due to take my tablet, so my body must be getting ready for its next boost of medication.


#17
hi scoopy I agree with you that you may need a review on meds as what your on is still low maybe there gently up meds I would contact pd nurse or gp.gus

#18

Thanks Gus

I dont see the neuro until October. I saw the GP last week and she told me the neuros decide the medication. I am ok with what I'm on, it is very early days and I am getting adjusted to it all, I suppose by October I will have a better idea of how I  am and how the medication works. 


#19

Hi berniedoc,

We live fairly near each other as I am in a Lincoln. I was dx June  2013 at Lincoln County and have since then had my prescription for my med started low on one med now I am on four different types just for the PD.

I not taking the same meds as you but if you need some guidance I can help with that Lincoln County Hospital have decided to have a volunteer expert patient consultant and offered it to me, although not officially stated yet I can maybe help you to understand how this may effect you as time progresses ( only of course if you want to learn about it )

You can PM any time and if you wish to talk I will give you a bell.

best wishes BB