New YOPD

Hello, so to make the start of 2021 even better I’ve had the results back from a DATscan which shows I have Parkinson’s. I’m 44yo male currently at home as work have me staying away whilst waiting a diagnosis as I do safety critical work. Apart from the symptoms which led me to see the consultant (not swinging left arm, pins and needles in hands and feet, knee pain and a postural tremor) I’m feeling ok and am managing as normal apart from my foot cramping up on long walks. The consultant said she’s refer me to a Parkinson’s specialist at the hospital and will ask my GP to put me on a medication until I get my first appointment with the specialist. I guess at moment I have two questions

1, can I get my gp to refer me to a specialist in London, I’ve seen UCL doing some great research and quite frankly I’d want to be treated somewhere with a lot of cutting edge research happening

2, I’m reluctant to start medication at the moment, I’m managing with my symptoms and the scare stories surrounding the meds is really putting me off, what are peoples opinions of delaying medication till it’s needed

Thanks all.

Hello @DB123 and a very warm welcome to the Forum.

I do hope you don’t have too long to wait to see the specialist. You will, of course, have many questions. I’m sure you’ll receive a lot of support from other members but in the meantime you may want to read the newly diagnosed section on the Parkinson’s UK website which answers a lot of commonly asked questions. As well, you can read more about the various treatments and therapies here.

If you’d like to speak to a Parkinson’s nurse, an adviser from our helpline can arrange this for you. Just give them a call on 0808 800 0303.

Best wishes,
Janice
Forum Moderation Team

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Hi reluctance to dive straight into meds is a healthy approach that gives you the chance to read up on PD and take charge of your condition. All the meds on offer only help to relieve certain aspects of your unique condition and do not cure you. Their “side effects “ can rise up to haunt you later. It’s a balancing act but the final decision on whether or not to take a particular path should rest with you! This forum is a good place to start and take your time about understanding and agreeing to any particular solution. Plenty of people with PD successfully mix standard meds with alternative practices and a good neuro consultant should not give you a problem with this. Good luck. JCPB

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hi db
you sound positive, deep breath
meds, it’s a choice, meds + control+ quality of life v side effects. or no side effects v no meds until you get really bad, lowering quality of life til then + more meds to survive. I guess you can see which side I am on
Research you can volunteer for all sorts. I am a Lay Person with PD advisor on academic research papers, keeping the scientists grounded.
good luck

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Hi there, in relation to meds I was diagnosed at 41 and am still not taking medication 3 years on. Whilst I struggle on some days I have spent time adapting my life style and general health which has helped.
Pain, tremors and dystonia are my main symptoms and I find physio very helpful.
Good luck on your journey

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