Diagnosed Yesterday

Hello to all. Yesterday I was diagnosed with PD at 48 by a neurologist in Sheffield. I didn’t know what to say or think but I will get through that. Because it was an out of area neuro she mentioned that in order to gain access to PD nurse services etc you have to be under a consultant in your relevant area for this? Also I now have Sinemet and like most meds I have read the possible side effects which seem a little concerning but if they give any relief then I will welcome that.
I know the globe is in a poor state at the moment but any advice would be greatly appreciated.

Hi Coggy, welcome to the Community.

Sorry to hear about your diagnosis. We have lots of information for newly diagnosed Parkinson’s patients on our website, which you may find useful: https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

We also have information and advice about Parkinson’s nurses, which you can find here: https://www.parkinsons.org.uk/information-and-support/parkinsons-nurses

You can also find details of the different Parkinson’s medications and their various side effects: https://www.parkinsons.org.uk/information-and-support/levodopa-co-beneldopa-and-co-careldopa

If you have any further queries or concerns, please also feel free to reach out to our Helpline, who are able to offer advice on a wide range of issues. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.

Hope this helps.

Best wishes,

Moderation Team

Welcome Coggy, you will find the forum a place where you can obtain support, advice and read about others first hand experience and concerns. Along with wit & humour we are a friendly lot on here.

I was dx # 11:21 12 Dec 2016, but was not overly surprised with the dx as I had suspect Mr parky had come in to my life. I recall so much running around my head and think well that’s it then.

Personally from my own experience Mr parky has altered the way I do things but hasn’t stopped me doing things. I still go on holidays, I enjoy family life and social events and gatherings with my friends. I have managed to keep in full time employment by taking a sideways move so I can have a life work balance, I know some will be thinking surely he means a work life balance, but I don’t my life and my family are my priority. Work allows me to have the extra things I want for them and me now so we can enjoy the experiences together.
You will probably have lots of versions as to if you start Sinemet as all our journeys with Mr parky are different as we all have Mr parky but it affects us all differently.
My personal views looking back and knowing about side effects, is I would still not change my decision to start on a low dose of Sinemet back in Dec 2016. It has certainly helped me maintain my ability to have the life I want albeit with some changes to the way I do things and the frequency of doing something’s.
I wish you all the best in what decision you make and in your future life with Mr parky. Parkinsons is something you now have but it dosn’t define you are still the same person. Grab all the support you can on your journey.
Good luck and see you on the forum :sunglasses:

My GP referred me to the Parkinson’s nurse and my neurologist was from a different area

I think the method for referring to a Parkinson’s Nurse varies in different areas. My neurologist said she would refer me but never got round to it so I self-referred, which is allowed here.

Hi only take meds if you need them i dont take meds ive been diagnosed about 6months too many side effects do your research about whats going in your body

Thanks for that. I’ll see what the GP advises. :+1:

Thanks for your reply. I’ll contact the GP next week and take it from there. :+1:

Thanks for your reply jps. I like the life work balance as I have my own business and some excellent employees who are very supportive.
All the best.

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Hi Calv. I’ve been prescribed a low starting dose. 12.5/50 mg twice a day I’ve started the dose and feel there are some slight improvements in my symptoms already??? with no sides. Everyone will be different. I was an avid gym goer 12 months ago but tailed this off due to symptoms. After researching it may well be that lifting weights again may be of benefit but again everyone isn’t the same.
All the best.

Hi Coggy,

Thanks for reaching out, its great that you’re already engaged with the forum. Try not to be alarmed by the side effects listed on the medication, you’ll find that they are listed in frequency of occurence and it is not likely that you will experience of these at all. My mum was diagnosed with parkinsons at a similar age, given this experience I would say be as proactive about the diagnosis as possible.

There is lots of useful information on this site, but try not to be overwhelmed with it all at once. You mentioned going to the gym. I would encourage this more than ever now, although don’t be disheartened if you don’t always find the motivation to go. Exercise has beneficial effects for every one of us irrespective of the condition. If you find that it is too much to handle, perhaps adjust your goals.

As JPS mentioned you can still live a normal life, wish you all the best with it :slight :slight_smile:

Hi @Gnijjar. Many thanks for your message. We are lucky enough to have a home gym which I have again started to use I’m hitting it as hard as I can and see it as a hurdle to breakdown. As far as meds go the 2 daily doses seem to work pretty well but do seem to taper off after 4 hours or so which hopefully when hopefully I can get a more detailed prescription and information When I get to speak to a PD nurse maybe. It’s really odd that when I’m nearing the next dose I get a little bit giddy knowing they help. Not sure if that’s normal?? Thanks for your message, means a lot. Also it was great to take part in the ‘clap for carers’ this evening. We are all in this together. Regardless of our ailments. :+1: