Newly diagnosed

My name is Andrea, i am 67 and was diagnosed just last week. I am on Ropinirole and would like to know other people’s experience on this medication. I’m still coming to terms with my diagnosis to be honest and would like to hear how other people cope.

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Hello, I iwas diagnosed 3 weeks ago. I’m 71 and have been put on Co-Careldopa. I was a bit wary about the side effects but, fingers crossed, its been ok.
Its a bit of a shock isnt it? Ive started exercising and trying to be positive. How do you feel about everything?

Hello asharpy12 and welcome to the forum.
You are very newly diagnosed and it can be a strange, bewildering and even scary time so the first thing to say is that you will be alright and things do settle down. All of us with Parkinson’s here on the forum have been through the early days and lived to tell the tale, but it can take a while to get everything sorted and it can be difficult to come to grips with your diagnosis. As you will quite quickly find out there is no right or wrong way to managing Parkinson’s, only the way that is unique to you so whatever you think or feel is legitimate and valid. There can be several people with similar symptoms etc., but the effect on each individual can be vastly different. So the forum is a good place to ask questions, get support etc., but people can only do what I am doing here, telling you of my experience and what I’ve learnt from others and you must take from it that which seems to apply to you if anything. It is all something of an inexact science.

To start with your immediate question, I was diagnosed over 12 years ago, started on Ropinirole straightaway and it has always been effective for me, with no major side effects - although I did feel quite sick for a couple of weeks when I first started taking it. Medication is a huge area that is often raised on the forum and is a good example of very individual response. Not all drugs suit everyone, sometimes just adjusting the dose, or timing can solve the problem sometimes a different drug is needed. Keep a note of how you are getting on and if you are at all concerned please do get in touch with your medical team - as time goes on you will get better at recognising signs and symptoms that are peculiar to you but this is not always clear nor do you necessarily know if something is ‘normal’ for Parkinson’s when newly diagnosed. It can take time to establish the best course for you so anything you can throw into the pot to help give a clear and accurate picture to your medical team is valuable.

Most of us would caution against reading everything you can lay your hands on at this stage; much better you do exactly what you have done here today ie concentrate on what you need to know now. Parkinson’s is a slow moving condition in most, so you do have time to adjust and adapt as time goes on.

Nor do you need to give up on your dreams and plans, you may perhaps need to do them a little differently but it is important to remember that you can have a good quality of life with Parkinson’s if that’s what you want; it may not be the life you saw for yourself but it is still your life so why not make it as good as you can.

Finally as time goes along your way of managing and living with Parkinson’s will become clearer. For some that will mean studying every bit of research in the hope of a cure being found, others will find anger at Parkinson’s and everything associated with it is what motivates them etc. For me the key is remaining positive, practically every post I write includes something about how important staying positive is to me. Your way may be none of these but there will be a path through the jungle that is right for you; can’t tell you when because it is your timescale, but it will happen.

Hope this helps a bit and that you will post again to let us know how you’re getting on or if there are other questions we can perhaps help with.
Best wishes
Tot

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Hello Alfsnan and welcome to the forum. I see you have replied to asharpy12 as have I, maybe my reply to her can help you manage these early days post diagnosis. Please don’t hesitate to post whenever you may need, it doesn’t have to be with a specific question, it can be anytime you need a bit of support because here on the forum no- one need feel alone. I once wrote a line in a poem which others have picked up on and is sometimes repeated in their own posts. I regard it as the foundation stone to the positive approach I choose to take in managing and living with Parkinson’s. It is very simple ‘I have Parkinson’s, it doesn’t have me.’
Best wishes
Tot

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Thank you Tot. You’re very positive which is what we all need x

Hi. I have been taking Co-Careldopa for a couple of months now following diagnosis. They seemd to be working as advertised but most days I feel totally ‘wiped out’. Sick feeling and head sensations. Not a headache exactly but more of a brain sensation. What does your head feel like on this medication?

Hi, I’ve started exercising too, I’m not very fit at the moment and want to do anything that will help the condition. I’m still in shock really, I think it will take some time to come to terms with.

Thank you for your informative reply Tot, lots to think about. I’m not sure if Ropinirole is right for me but it’s early days I suppose. Time will tell. I can’t say I’ve noticed any difference in my symptoms yet but not sure if I should expect to or is it meant to just stop things from getting worse.

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Hi Tot,
I was diagnosed about 18 months ago now.I am not on any medication thus far and am avoiding it as long as possible.
I do know that the body builds a tolerance over time to any particular drug so the dosages need to be increased, so I am not on any medication so far and am avoiding it as long as possible,

Hello CliveV medication is arguably the single biggest area of concern and there are no straightforward answers. If you are managing without medication that’s great and good luck to you. For me the tipping point is when it begins to affect your quality of life and stops you enjoying your life now… Of course the long term effects of meds cannot be ignored but when one is facing an unknown future except for the fact deterioration is a certainty, the present cannot be ignored either. For me personally I will take my chances with long term use of meds because today- which won’t come again - I have quality of life I wouldn’t have without them. The future will be what it will be but the future alone is not my life - that is a patchwork of past, present and future with each element contributing to the person I am. I have Parkinson’s that is a fact I can’t change. Maybe with long term use of meds it will make my future harder but that’s not necessarily a given. In the meantime I do not intend to make it easy for Parkinson’s to have it all it’s own way and if meds helps me do that then meds it will be. I wish you well with your own decision and trust it will continue to be right for you as my decision is for me.
Tot

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Hi CliveV, I have been on madopar for 3 yrs now and my understanding is that with regards to pd the drug is stimulating the brain to produce dopamine and your body doesn’t become used to the drug but just needs more of it as you need more stimulus to produce dopamine. What I’m trying to say is that if you take the drugs now it won’t mean you have to take more in the future to counteract the situation. Hemyock

I was diagnosed 11 years ago, and have been on a cocktail of Parkinson and non-Parkinson medicines for 9 or more of those years. Ropinerole, Benzaseramide/Beneldopa (Madopar), Rasagiline , and just lately a dispersible-in-water version of Madopar, to be taken - not at fixed times each day but up to three times daily, as and when needed. (In other words, when the other meds are not doing enough.) The pharmaceuticals industry is only now beginnig to give PD the attention it deserves - this becomes clear when you consider that there is no medicine that targets the disease; only the symptoms - and they are not wonderful at that . The most successful of them has been around for 60 years. I often feel sorry for our GPs and neurologists who can only prescribe what actually exists, knowing as they do so that these drugs will not be very effective, and wishing they had something better.

Hi, I am 57 and my diagnosis was confirmed about two months ago after initially being suggested in September 2021, which was a huge shock. I was offered medication but I decided not to take it for now, as I don’t feel I need it so far because I feel I can manage my symtoms without it, although I am open to consider it in the future if needed. I would be interested in hearing of people who have tried alternative treatments. I have been a vegan for about 25 years and currently I am doing mostly a raw diet. I am seeing an accupunturist for treatment once per month and I am finding it very beneficial, some of my symtoms have improved or faded away and I believe this is due to the accupunture treatment, which combines herbal treatment, craneal osteopathy and massage. I also tried a few reiki sessions and found them helpful with increasing my energy levels. I do chigong at home, which I find helps me to relax and I try fitting in my week as many regular walks as I can and visits to the outdoor gym in the local park. It would be great to hear from people in the forum who would be interested in sharing experiences of using alternative treatments. Best wishes.

Hi Hemyock,

Thanks for the reply, but isn’t that basically the same thing?
You need to increase the dosage over time.

Hi Tot,

We seem to have the same basic philosophy, but express it different way.
Right now my quality of life is good, so there is no reason to take medication, however if/as it winds its way through my body, I will do what is best for me. And yes, although your life is, as is everyones, a ‘patchwork’ as you express it, that is exactly the point.
It enables you to make the decisions that you feel are best for you.
Your past life is what makes you, you, however that is ‘history’ which one can never forget or ignore, what I am concerned with is my future and where I can go and what I can do from here.
As I said in the beginning, I asked “why me?” but then I realized “why not me”
If meds help you, that is fantastic, however we are all affected differently, and you find help with meds, that is all anyone could ask.

I entirely agree with you that we share the same basic philosophy although we perhaps take different routes which is exactly as it should be in my opinion. Where we probably differ is you write you are concerned with your future, where you can go and what you can do… I on the other hand took steps early on to put what I could in place to make things as easy as I could for my family. Other than that I don’t give much thought to my future at all until something crops up and a decision needs to be made. What will be will be for both of us and everyone else with Parkinson’s, wherever and however that may take us. May you live long and prosper without meds, I hope to do the same with them lol :laughing:
Tot

I haven’t been on the forum for a couple of weeks due to holiday, but ive just read all the above comments. I didn’t realise that some people don’t go directly on to meds when diagnosed. I don’t feel any different on my meds, Roprinirole, and wonder if i would be as well off without them. Whats people’s thoughts please?

Hi Andrea,
I’m Pete 62, diagnosed in Feb this year, although I’ve had a tremor in my right hand since Nov 19.
I suppose I guessed it was PD early on, so it wasn’t such a hit when my doctor told me this year, I think it shocked my wife more than me.
Never mind that’s life.
I’ve just joined the forum today , never been into computers that much but i think this forum could be useful.

Regards
Pete

Hi Pete,
Computer enthusiast or no, we’re happy to welcome you to our wonderful forum community. Here you’ll find a diverse group of PWP and carers, some with experiences very close to yours and some with new perspectives to share. We also have a website worth your time (we recommend starting here) and a free and confidential helpline at 0808 800 0303. Many routinely take advantage of these tools to educate themselves more on Parkinson’s and find activities and resources in their area, keep up with research, and read through archived forum discussions. We hope you find comfort and wisdom and even humor here with our awesome group of forum regulars.
Best wishes to you and yours,
Jason
Moderation Team

Welcome Pete, I am sure we will gain lots of positive info from this forum and hopefully contribute as well.