Is it better once on medication?


#1

Hi. I was diagnosed in November having noticed a worsening left arm tremor since May, I was told that the stiffness and tremor would worsen slowly and eventually progress to my right arm. I feel that some days are worse than others and it is noticeably getting worse. My next appointment is in June 2017. I guess I'll be put on meds from then. My question is will the meds make me feel better. Less tremor, less stiff and less tired?

Thanks for any advice.

 


#2
Hi, I started a low dose Ropinerol in Sept. I've weakness all on my right side. I'm quite active and my consultant is reluctant to increase it too quick. If I'm honest I haven't noticed too much difference but it does make me feel 'normal' for a few hours a day. I find the tiredness the hardest some days. It's true that some days are worse than others. It's early days so I guess it's a wait and see thing with the meds. DivineR

#3

Gingerjohn I like you have recently been confirmed with PD but have been taking meds for the last 16 months...As for your quesstions relating to meds. and their effect on lessening symptoms this is a highly variable with each person..however the whole objective with the meds specifically Dopa-agonists...fancy term for the stuff you need..neurotransmitter dopamine..is to address deficits in your bodies ability to produce it which leads to breakdowns in specific physical domains..like balance..coordination..and psychological domains like executive function, motivation, cognitive processing and memory...So these meds help in the physical stuff...and no so much in the psych. stuff..and yes you should gain better managment of the tremour..the fatigue and stiffness..These meds when they are taken ..control/dictate for a given period..when you feel good vrs. when  they are wearing off and you feel bad...so called "On and off" cycles. Other patients on this great resource PUK might have better explainations...and more practical advice but my parting wisdom is try to stay active..and try to find something..anything that you love to do and keeps you diverted so PD doesnt run-amuck..Hang in there dont let this get you bummed out...it can get better and you'll see the sunshine soon enough..


#4

DivineR.

Look into past posts on here regarding dopamine agonists and their possible  unwanted side effects.  It's not great reading.


#5

Hi

i was diagnose at the end of sept.  I was given madapor to take 1 a day for a week then 2 a day them up,to 3 a day . The medication was giving me anxiety and depression so I tried to get in touch with my consultant  but was unable to so asked my GP to see if she could get through , she did and medication was changed to 1mg of Rasagiline once daily.  I am still a down but not quite as bad . I find the hardest thing about it all is the lack of help available which is why I have joined this forum . I have been on the Rasagiline now for 8 days . Does anyone have any advise on coping with the blues ?


#6

Hi Loopylou,

I'm sorry to read that you are struggling with anxiety and depression on top of everything else. I'm sure other members will come along to share their experiences and coping techniques soon, but in the meantime I wanted to let you know that we have an Anxiety and Parkinson's information sheet and a Depression and Parkinson's information sheet that you might find useful.

I hope it helps, but please keep us posted.

Best wishes,

Mara
(Moderation team)


#7

Gingerjohn,

There is much good news (GN) and bad news (BN) in what you write:

It varies from person to person, but once you're on the proper medication:

(GN) your stiffness and tiredness should be much reduced;

(GN) the tremor reduced, but probably not eliminated.

(GN) Your next appointment is in 6 months: your consultant doesn't see your case as urgent.

(BN) Your next appointment is in 6 months: the fact that you ask the question suggests that you may well benefit from some meds now (not in a life or death way, but in a quality of life way). If you can't get an earlier appointment, I suggest you see your GP.

John

 


#8

thanks for that Mora I will check it out 


#9

 

 

        Hello  John

                             You may or may not find a huge improvement, in fact by  now  you  will know or not  know if it has  or has not made any difference to your problem, Im not being faceitous about your post in any way its just there are so many meds available to combat  BLACKHEART,  ( my pet name for the beast)  its a trial and error sitiuation my friend, I ploughed  through tons of  drugs ( my wife says she has told me 100 000.000 times  to stop exaggerating )  since  diagnosis  and that was in  99  and it  took a while    before i found the right  combination, I am lucky  enough to have Duodopa  now  which is  a pump delivering Levadopa/carbidopa gell  direct to my small intestine, its a very  good  system and  works  well  for  me  despite  what  you may  have  read  elsewhere on this forum , when im in a off  mood so  as I said tria  and  error   John

                                                       Regards  FED  best  for  christmas


#10

Still feeling low it comes and goes. I have been given Rasagiline been taking it for 2 weeks today but not having much luck with it it's doing nothing for the tremour it's worse on the medication than it was without .  Have I given it enough time or does it take longer to see an improvement.  I haven't seen my specialist since diagnosis when would I be reviewed. I put the anxiety down to the lack of support on diagnosis . Prior to Rasagiline I was taking madapor but the depression was worse when taking that. I am usually a glass half full kind of girl would love a glass half full of wine at the minute but best not . 


#11

Hi Loopylou, I was just wondering if there is  a PD nurse in your area that you can be referred to? I know we are all supposed to be 'taking control' but we need proper support and advice in order to do this. As far as I understand it, chemical changes in the brain can lead to feeling low and anxious (on top of the anxiety and shock of the diagnosis itself - which I think is sadly underestimated and unsupported generally). I was advised that it can be hard to counteract depression associated with PD related causes by positive thinking alone and that advice should be sought from somebody who can diagnose and treat the cause medically if necessary.  My GP is great but has zero knowledge of PD so I find the support offered by the  PD nurse  invaluable.  I do worry a lot about essential  services that actually make a difference to those of us living with the condition now being replaced with digital resources (which have their place, but should  offer support on top of face to  face services, not as a substitute).  Personally, I need to be able to talk to somebody and have the chance to  ask questions and express concerns. Have you tried the P UK help/advice line? It might be a starting point and you could also get information regarding PD nurse support in your area. I was diagnosed in my late 40s and 4 years on still find it hard to accept - I  have, however, accepted that it's ok to feel totally peed off about the whole thing and strangely, that helps. But we're all different and so maybe that just works for me. I won't even start on the whole 'hormones' thing on top of PD (there's little information on this - well, none that I've found) but there are days when I think I might  not be legally responsible for my actions -or would at least have a good defence!! I hope you get the support you need soon so that you can make informed and advised choices, it doesn't make it go away but does help with ' taking control'  and working out how to live with this  thing as best as you can (I even have glass half full days and I've always tended towards half empty so there is light..).     Take care.   J :-)


#12
Hi Loopylou, I think the meds take longer than 2 weeks to kick in. I upped my meds dosage and after a week or two felt as if I'd taken a backward step. I felt my PD symptoms were worse and my positive attitude was looking very negative. As Jackson says a PD nurse (a good one) is invaluable and is the link between you and the consultant. Also it's not just 10 mins like the doctor, I could be with mine for over an hour before I realise it's time to go. Give the meds a while longer and find out about PD nuse. Good luck!

#13

Hi 

thanks for your reply. I totally agree with you in regards to the diagnosis and the total lack of support when it is received. I will make it my business to find out about a PD nurse as I think one would be invaluable to me . 

Thanks again for being so helpful 

 


#14

Divine R

thank you for your response as I have just said to Jackson I will make it my business to find a Parkinson's nurse in my area . I will give the Meds a bit longer as you have suggested . 

Thank you 

enjoy your Xmas 

loopylou


#15
Sorry to but in but if you go on support for you type in post code and it comes up with pdsw name and number hope this helps

#16

Thank you Gus I will do that 


#17

big grin


#18
Hi Loopylou....just to warn you that if you put your postcode in to look for PD nurses in your area this info is not up to date on this webpage. ...our amazing PD nurse left and her details still come up to contact.....PD nurses are invaluable people as we are now left with just a list of webpages to contact for help or our consultant. The chances of getting a quicker appt with the consultant are very slim. In fact when my husband was diagnosed all we got was a booklet about PD and to be told the PD nurse will contact my husband within 3 months! Nothing else was forth coming from the consultant. All our info and questions we had to ask the PD nurse. She was our life saver, to say we now feel like we are drowning with no "face to face" person to talk to would be an understatement. So hopefully you have a PD nurse in your area as they are a much needed person....

#19

Hi babesbrown,

Thank you very much for bringing to our attention that the local register of Parkinson's nurses on our page is not up to date. You are quite right that Parkinson's nurses are absolutely vital for people with Parkinson's. We want to provide the relevant information to all those who need it, so apologies for this inaccuracy. Could you send us a private message with the details of your Parkinson's nurse that are no longer correct on the website, please? I will make sure to flag this with the content team so they can resolve it.

Best wishes,

Mara
(Moderation team)

 


#20

Thanks babesbrown

i am now trying my GP to see if I can get some info on a Parkinson's nurse .  I definitely feel like I am drowning I got no info what so ever from my consultant about a PD nurse or PD I have  been left to my own resources .  This site is very helpful and I have had great advise from others in the same position.  You get this life changing diagnosis and are left in limbo it's awful to say the least .