Drugs not working


#1

I was diagnosed in October 2014 although I knew for about a year prior there was a problem. I don't have a resting tremor, my right hand is a little stiff but my main problem is walking and headaches. I have tried patches, Rasagaline, Rupinorol, Levadopa. Nothing has any affect on me. Consultant seems to be at a loss and I'm getting scared that there are no drugs left to help me. Please, if anyone has any ideas, drop me a message - Wayne. I'm very worried.

[Post edited by moderators] 


#2
Hi Wayne, I like you don't have a resting tremor, stiffened right hand to the extent where I hardly use it anymore due to the stiffness, my walking is also affected and have a limp due to not flexing my foot up so slapping my foot down only thing I don't get are headaches... I was put on Madopar 100/25 3 times a day but I think they have helped a little bit but not as much as I presumed they would maybes an increase or an added med will help more see my consultant in 2 weeks. Have you had a Datscan done to confirm the diagnosis? Has the symptoms you have progressed slowly? And you tried both variants of levodopa (Sinemet/Madopar) ? What age are you (I am 36 yo) as YOPD from what I have read can start the way your symptoms describe. Take care. Trev.

#3

Aye aye Havana 

am sure you will get there eventually I sometimes think if PD doctors ran a car on medication it would do a thousand miles to the gallon they are that economical with the drugs , hope you get sorted soon take care

ian


#4


hello,my neuroligist said to me last week to start thinking about dbs, do you see that as a possible solution if the drugs are not working


#5

Aye aye biscuits 

I can't answer that cause I know nothing but if you have tried all of the drugs and timed them properly then we'll maybe , as long as you've tried them all and for the correct length of time sorry but it's your shout , for me I wouldn't rush anything good luck ma boy all the best 

Ian 


#6

Hi Biscuits are the meds working/worked for you?

I'd probably consider DBS if it was going to improve my quality of life, in the letter sent to my doctor my neuro thinks I have genetic PD which is supposed to work great on DBS I have to get my bloods/DNA tested for that.

Trev.


#7

im 90% happy with meds at moment , levodopa is great but its the diskenisia that is a nuissance


#8

Well biscuits

good luck if you don't mind my saying you look like you'd be good crack at work !! Well we're all behind you and look forward to your posts all the best for now 

Ian 


#9

aye aye ian, im ok,my problems at the moment are wearing off meds too soon my mood is up and down all day,wish i could go back to work,how are you coping on daily basis ?


#10

Aye aye biscuits 

aye am much the same as you my mood stays the same but trying to walk with weight in my hands is  sometimes impossible it's a bugger its like a stutter in the legs , I drive a wee tipper delivering house kits and all plasterboard ect when am no delivering I do a fair bit of scaffolding for houses and extensions they build its a good job and the joiners are good at helping me out , what do you do yourself and how do you get by your problems ?? Your probably like me you blag it sometimes good to Hear from you ma boy try your best you can do no more 

Ian 


#11

Jesus biscuits 

just read your post properly and can see you had to give it up sorry mun am no right the.day at all 

Ian 


#12

Aye biscuits dopey here again 

sounds like your no having a good time just now , I was talking to folk while posting you last time and  not paying attention to the forum at all realy ! What was it you used to do ? And what part of the world do you live ? Am speyside near grantown on Spey . Quiet a Bonnie place to live but nobody about here with PD that I know of so.i like to post on here as when I say I have a stutter in the legs someone knows what Ireally feel .are you planning dbs ? And do you know if  it helps with walking at all ? As the programme I watched it just seemed to help the shakes . Funny thing is  I can walk backwards or up and down stairs but not forwards ugh!!!  Look forward to hear from you take care biscuits 

ian


#13

aye aye ian,no need to be sorry,im a plasterer by trade, i love it, but ive had to stop work now,not only do i have parkinsons but i also have tendonitis in my wrist and osteo arthritis in my shoulder so plastering is a no no,in the time ive been diagnosed with these 3,ive taken it pretty well,i just spend most of my time now raising my 3yr old daughter which requires a lot of energy i dont have.   do you find work increasingly differcult? do you have family around to support you on your bad days?


#14

hi, never heard of spey before, where is that?,im originaly from wirral the north west,but moved to west yorkshire feb this year from france, i have the same walking probs as you ,when levodopa kicks in my walking is better but when meds wear off and i have a vape my leg goes bad again and tremor comes back,dbs will give you back your physical life,it will take your symtoms away,not planning dbs for a few more years,theres still more meds to try first.


#15

Aye aye biscuits 

that's a pretty hard game the plastering . You don't do things by half do you PD is plenty never mind other probs , aye I have 2 sons 24 and 28 year old so it's just the wife and myself now ,  no grandchildren yet though .you ever get leg stutter like a freeze where you almost fall over , and as for shopping malls no way am going back there to many bodies ,I see plastering is making a comeback lot of kits getting a skim on plasterboard where did you work hey you'll have to work harder looking after your daughter need eyes in the back of your head at that age ha ha !! 

Ian


#16

Aye aye biscuits am 45 minutes from Inverness home of the Loch Ness monster (lot o s...e. )


#17

aye aye ian, i do have a leg issue like you but what makes it worse is the nicotine,ive got no plans on giving it up yet as i enjoy going outside many times a day for 5 mins to give the eyes in the back of the head a rest,children are hard work . ive always worked in wirral self employed when i was 21,learned trade from my dad,also worked in germany for 4 years and france for 3 yrs, how long have you had pd and have you any other symptoms? 


#18

Aye aye biscuits 

how's the form we yersell ? AV no had a good day all mun I was doing fine till vap ran oot o batteries and workmate gave me 2 fags bloody hell near put me clean off ma legs and both my left leg  and left arm went tight as a banjo string !! No way will I try that again !! Christ nearly fell trying to get into the hoose man glad to be sittin doon now so that's me shaking posting you al gee you a shout later am gona lie doon fir a wee while 

Ian ( you asked my symptoms !  ) 


#19

Aye biscuits 

both you and I would be better off with no nicotine at all walking is hard enough as it is ,I've had this PD for 3years dx 1year ago , went to local gp 2year ago but he said the.shaking was just my age nothing to worry about ( ass of a man ) present day my left leg won't work  and I get a form of cramp in left leg and arm . How aboot yersell ? Have you had a day of saying no don't touch ,leave it , carefull  o the joys o kids.good money to be made at plastering then? Hard work I know that!!,I was a coal merchant for 20 years before I started in the job I do now it was a heavy job .am having a can o lager just now I dinna like wine some say it's no good for PD but it disna bother me . Do you go a beer yersell ? Aw well that's the news from north east Scotland 

ian


#20

Hello who's aboot

I was going aboot the hoose muttering to ma sell the wife said what ? I said nothing I was talking to ma sell she said your allways talking to yersell why don't you go on your forum so here I am and still talking to ma sell  ha ha !! Loving this like ! Forum can be a great amusement to me sitting here smiling away posting and the wife's thinking now then that's him sorted !  He he I taught the fox cause if am on here she Wina give me a job to do . Happy boy Ian