I haven't been on this site for a long time, but I am pleased the support is helpful. I wonder if you kind people would give me some advice. I really need to know about medication etc.
I was diagnosed in 2010 and I refused meds until 2013 when Ii went on Sinemet, at this point I went downhill fast...I couldn't walk and spent most of my time in a wheelchair. My GP said that this is the way it was going to be and I should adapt my home (bungalow). I decided this wasn;t going to happen so had a heated (slightly warm) chat with my neurologist as the med was making me worse.I came off Sinemet and was put on Amantadine. I have been told that all levadopa meds give you a 'boost' but I've never had this. I get no relief from heavy legs, stiffness and arm shaking. I am now walking with assistance and have put my wheelchair in the garage. It is weird but I feel I am getting better (in some respects). What I really want to know is:
Do you get a boost when you take levadopa meds. Do symptoms lessen.
Do you get days when you feel strong and quite normal?
When your arm shakes/tremor how does this feel? Can you control it? When your arm is rested does the tremor stop. Where does the tremor come from?
Sorry to be such a nuisance just not getting any answers to questions anywhere else. Have given up speaking to GP and Parkinson''s Specialist nurse.
Hope you can help. I will appreciate any comments, advice etc
Welcome back to the forum. Please also feel free to call our Helpline on 0808 800 0303. Our advisors would be more than happy to talk through any questions you have regarding your medication. We are open from Monday-Friday: 9am-7pm and Saturday: 10am-2pm.
similar Questions the GP asks... "how many days a week or month do you feel normal"
I'd answer how Can i say how many days are Normal, each day is different, each hour, each moment.
Normal now might be and is different too Normal last year or the year before, Normal 5 yrs ago i had a Job, but i still had a tremor, then Normal became a tremor i couldn't control or hide.
I might feel Normal too myself at the moment
i've just had the pills levodopa boost, I might wish too do something with that , i'll go out or i'll think about it, i'll expect too have some time too do what ever my heart desires, before the next dose. what this dose gives me might not be the same as the last or the next, ding ding, that's your lot that feeling like a battery that's run out.
Do symptoms lessen Yes, But what i do while they've lessened often determines how they are Later, can i control the the tremor?, I can try and hide the tremor from view, its there when it decides too be, My Shakey claw lol.
Thank you for your reply. Maybe I just don't understand Parkinson's. My carers keep saying they deal with Parkinson sufferers and I am not like them. Are the symptoms that extreme depending on.....I don't know what?? Some days I can go out on my delta with a carer and sometimes I am in my chair for the day. How can symptoms change so much when the medication is taken at the same time every day?
I wonder what your carers would make of me? or the next person too comment? or one after that, we're told we are all unique in how it effects each of us or each extent or which pill or combination of helps, perhaps we need to just too understand ourselves or atleast ourselves how we are here and now. Hopefully some pill or treatment will come along too better it.
Please phone the help line ábove as they will be able to talk over your situation with you. Make sure you mention all medication you may be on as some should not be prescribed to PD patients and some interract with the drugs.. Is your neuro a movement specialist?. Also most GP's would confess to know very little about PD unless they have taken a particular interest as PD varies from person to another and they do not see them that often It may seem strange to query basic things like drug interractiions but on this forum these have been reported . Long before overt symptoms of P D I twice had a very strange reaction to an anti nausea drug metaclopromide, . I now know that it reduces your dopamine and I must have been running low already without knowing it. . I also know that it has been prescribed in error to PD patient on meds.. Too much has even produced parkinsons like symptoms in people who have not got PD. Also with anti-depressants, there are only certain ones that PD patients on meds can take
I only make the above observations as you are already searching but I have no medical training
Do you get a boost when you take levadopa meds. yes Do symptoms lessen. yes
Do you get days when you feel strong and quite normal? yes
When your arm shakes/tremor how does this feel? horrible Can you control it? no When your arm is rested does the tremor stop. no Where does the tremor come from? unknown
PD is very different in all whom have it because of our own unique DNA. Levodopa is the standard pd treatment and is worth it weight in gold the worst thing for us is stress.my advice is only see two GP's re your pd your own if any good and a back up. my two both dad's had it. mine are fab and very helpful review me monthly this condition is a b**** but and needs fighting. AP-go pen can help if your have trouble walking. Good luck keep positive.
Thank you all for your comments they really are appreciated. I do have one revelation, a friend said that Hemp Oil was effective in reducing stiffness. I researched it and thought that I would give it a try. (£7 a bottle in Holland and Barrett one spoonful a day, I put it in soup at lunch times). My stiffness has improved so much it is amazing. I have been on it now for about 10 weeks. Spoke to the specialist nurse but she had never heard of it. Has anyone else heard of it.
Oh yes ive heard of it, but i use it for fishing, i usually get it from tesco's , i'm not sure of the price but i don't think it was 7 quid a bottle. there's a line up of other oils as well.
Hello ,bb,Karen ? and everybody here, this is my first time on any forum ,and im not too good on computers so forgive me if i get a few things wrong . ide like to introduce myself .... so here goes . my names mike , and im a 48 year old scaffolder from bristol . i was dx june 2016 after mir , dat scans etc . noticed problems around two yrs ago . i had first meeting with a parkinsons specialist a couple of weeks ago ,at least i could ask a few questions , he was as helpfull as he could be and put me at ease but as the same with the neuro , i got home to realise the only thing i can do is wait and see what time will tell . i know that may seem obvious but its so frustrating . im on 8 ml ropinirole and madapar ? ...i live alone but have a few good friends to bounce off , i have been depressed in the past but dealt with it myself the best i can , but its definatly has got worst since being dx , is this a normal part of the process ?. ive had a few major happening in life , but so have many people, and far worst , my true apologies if i sound a miserable so an so , i like to think im a happy ish bloke most time but inside im pretty mixed up about things ... any advice would be gratfully appriecated ,All the best and thanks for listening . smudger.s ps i always seem to have no get up and go since dx , is it me? the meds? because ive never been like this .
There are loads of people here who have been through the same kind of thing that has just hit you. It can be hard to take in but chatting to someone who has been through it helps. When first dx it is easy to fear the worst. In truth it probably won't be as bad as you fear. I was dx 11 years ago aged 39 and I'm still working.
Depression, anxiety and general low mood are quite common in Parkinson's people partly because you have less dopamine which plays a role in mood and partly because you have just been given a pile of new stuff to think about. It can take a little while to get the right dose of meds. When will you next see your Parkinson's nurse or neuro?
Were you warned about possible side effects of ropinirole? Ropinirole is a dopamine agonist and this kind of drug can cause impulsive & compulsive behaviour in some people. Its a great drug if, like most people, you can tolerate it. The important bit is to check that you are talking to your nurse or neuro about what to look out for.
There is some fantastic research going on in Parkinson's and one of the most promising trials is based there.
Hi Mike BB hear otherwise known as Karen My real name, Bettyblue term of endearment for my very much loved and missed mum lost to us at 49.
Everything you are experiencing is normal I often describe dx as like a bereavement life before and life after. It dose in my experience get different.
My Advice to you is to learn about your condition the more you know the more you can help yourself there is also in your area Bristol Temple Meads a very good support group I know two ladies are members and I brought them together via this forum in fact I will be there myself on April 2 as visiting Dawn.
Don't assume everyone has advance PD and are all in wheelchairs I thought that and was proved wrong thankfully excellent free computer course 3 weeks called GOOD BRAIN BAD BRAIN PARKINSON'S i got 84% company who run it are future learn.
Thank you all for getting back to me so soon ,really appreciate that . besides the side effects when first taking meds ,ive had no problems ,,,,but ive put on a stone and a half so far in weight since and can seem to shift it ..it must be the meds because if anything my lifestyles pretty good ,i have a few beers but not half as much as before ..any ideals...?...karen .life before life afters about right in my book , keld. thankyou , elegant fowl ?..interesting name ..yes i think the lady at the hospital said the next appointment is around 5months time ? does that seem about right to you ?....will say hello to you all soon ,chins up eh
You should and I stress SHOULD have a review every 6 months without fail but not all hospitals are good at this if you do not get your appointments through to enable this to be the case ring them and do not take no for an answer. I am sure every time I call Lincoln County a message probably come's up with my name saying Pain in the A*** but I don't care it is my right to be reviewed on a regular basis. So they can put up and shut up.
The last comment I made in my post above would have made more sense if I had completed it. It was meant to say that some leading research into Parkinson's is taking place in Bristol. It is a trial of a growth factor directly infused into the brain.
Thanks karen ... ill give them a call to find out when theyll be seeing me next....i do like that attitude ! HA ,i think sometimes its the only way to get heard ... wish i would of had that when trying to contact my nuero on several occasions ,secrectary was so unhelpfull ,and not an ounce of compassion .
, keld. thankyou , elegant fowl ?..interesting name ..yes i think the lady at the hospital said the next appointment is around 5months time ? does that seem about right to you ?....will say hello to you all soon ,chins up eh