Help


#1
Hi, I am 49 years old, recently diagnosed & still trying to come to terms with it all. I really do not want to start taking the pills just yet as do not want to become 'dependent' until absolutely necessary. I just wondered if anyone else has tried this and can give some advice?

#2
Hello Buddygirl and a warm welcome to the forum.
You will find this place inhabited by lots of friendly people of different ages and from different backgrounds all brought together by an interest in Parkinson's. I was dx about 7 years ago at age 39 and I keenly remember the shock and angst that overtook me when I was told I didn't have a trapped nerve but something else entirely.

There are several types of drug that act to boost or replace your natural source of dopamine. People react differently to the underlying condition and to the drugs and the side effects vary too. Add to that the fact that we all value different things in life and you can see that there is no one size fits all medication plan.

The choice about when to start medication is a very personal one. Take advice from your neuro and Parkinson's nurse if you have one, talk to other PWP, talk to the Parkinson's helpline but most of all listen to your own body.

Deferring the start of medication could be the right thing for you as it was for me. I didn't start medication until more than 2 years after dx.

I hope you find the forum as helpful as I have done and I hope you keep posting

Elegant Fowl

#3
hi I found that taking the meds. helps .you may feel sick for two weeks .they give you the space to get used to having pd. there is no point in playing catch up if A helps you now there is no point waiting until your at B to start taking A you will never feel able to cope .not taking the meds. is understandable but there is an element of denial in it jump in front 0f it .sorry for being so blunt saying hi at the start is the best I can do at chit chat and you did call help

#4
The one thing to note about current PD meds is, in the words of my Neuro, "They are only a cover up job". If you can cope without meds and you can still do all you want/need to do safely, carry on is the answer.

Reading between the lines starting meds or delaying meds doesn't appear to prejudice what the meds can do for you in the future, only the dose might vary I guess.

PD is a fairly individual problem, yes we've all got it, but how many of us could match 100% of our symptoms & meds exactly?

If I get asked by a friend or family member "how are you getting on?" My tongue in cheek answer is "worse than I was a year ago, but better than I'll be in a years time".

Regards Tractorman.

#5
I am 54, diagnosed 5 years ago and also very reluctant to start medication but I did two years ago and feel much better than I did before (although they did make me feel ill initially, you get over it). I also take a supplement, Ubiquinol which has made a big difference to my energy levels. Anyway, you will know when you are ready to start taking medication.

#6
Buddygirl- I was diagnosed July/August but had no advice or help in the first 6 weeks or so. I think I panicked and became very worried and stressed, felt my symptoms were getting worse and asked to go on medication. No-one advised me not to ! I'm on quite a low dose but I do wonder if I should have managed without for a while. I wish someone had advised me.
So all I can suggest is not to rush into anything - do some research and get advice if you are able to.

#7
Wow, thank you all for your messages of encouragement, it is so nice to feel not so alone which is a first in these last 2 months!!
I gave in last night, taking my first pill after a bad day with my 'claw toes' but had a sleepless night worrying about the side effects ... I know it's in the mind as have always reacted badly to medication:flushed:.
Trouble is, the neurologist wrote out the prescription and told me to come back in 3 months so basically no 'back up' as I would have liked? - I've heard about Parkinsons nurses and how good they are, but when I spoke to my GP about it, he said I will need to be referred by the Neurologist so yet another wait.
I feel like my head is spinning with the dreaded Parkinson's disease and cannot think about anything else, not wanting to see or speak to my friends and family which is hard for them too:rolling_eyes:
Sorry if I am sounding sorry for myself as I know you are all in the same (or mostly, far worse) but it feels so good to finally be able to say how I feel!

#8
Hi again! It sounds like you feel much as I did/do ! It seems like there's nothing else to think about- everything you do relates to the Parkinsons. My family seem to be more-or-less ignoring it....I'm not sure if maybe it's better that way - I am leading a pretty normal life at the moment but my brain is not normal!! My son and daughter both live away from home now and although I told them, they don't mention it. I think my husband is in denial - he kept saying at the beginning 'You haven't got Parkinsons' or 'I'm sure they've got it wrong'.....now he just doesn't mention it. Actually today he did ask how I was feeling!

I think you'll find this forum helps - I'm glad I found it. You realise that you're not alone and there are people out there feeling just the same. It helps just to write it down - and it's even better when you get lovely replies. Only trouble is, I seem to be spending a lot of time on here now and not getting things done!!
Hopefully in time we'll learn to just accept it and it'll become our 'normal life'. Good luck with the medication!

#9
Hi Sue
Yes, good to know that there are others out there knowing what we're going through and I know what you mean about getting nothing done!!:smile:
My husband is in denial too, all I get is 'you're ok' when clearly I'm not! It must be horrible for them though as they must be as scared as us deep down eh?
Anyway, keep your chin up too and thanks again

#10
you do get used to it and actually sometimes forget about it. tell your partners to hold your hand that shakes can they feel the buzz of it. I think if you stop being frighten of it it will help them. live for the moment because thats all we have

#11
Hello there. I was diagnosed at the end of May and the hardest thing for me was the decision aboout medication. I had some people (GP included) who told me not to start on the medication that the neuro had prescribed because the effectiveness wore off; then other people telling me that this was no longer thought to be the case. One of the most helpful people I spoke to was a lovely nurse on the Parkinson's UK helpline who really helped me get some perspective on it.

I am now taking a low dose of Sinemet, just in the morning and at lunchtime and that gets me through a day's teaching without worrying about the symptoms. I have found it helpful and got used to them very quickly. I don't for a minute regret taking them.

It is truly scary. For a few months it seemed to me that I thought of nothing else but Parkinson's. But it has already got a lot easier for me, and it will for you. Hang on in there!