Just told


#1

Was just told yesterday thought their would be more tests don’t want meds but I wondered why my walking was getting worse and how I wake up with a hangover every day when I haven’t drank is dignoses some time wrong


#2

Hi Sue and welcome to the forum.

I think neurologists are very variable in what tests they do. I was referred for a DATscan to confirm the diagnosis although my neurologist had already said that she was absolutely convinced I had PD.

I can understand you wanting to avoid medication until you need them. When I was diagnosed it came as a total surprise to I went along with the prescribed rasagiline and only did the research afterwards. It has helped though and I haven’t had any side-effects.

I’d recommend looking for PD exercise classes near you - I’ve found that extremely helpful.

All the best

Clare


#3

Hi @Sue3,

A warm welcome to the forum.

@Singing_Gardener has given some really good advice - you should definitely look into PD exercise classes. I also appreciate how surprising your diagnosis may have come to you, but please remember that you are not alone, we’ve got information and support to help you. You can start by visiting our ‘newly diagnosed’ page on our website here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons

Also, our helpline and Parkinson’s local advisers are here to answer any questions you may have about your recent diagnosis. Please feel free to give us a call on 0808 800 0303 our opening hours are from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk.

Lastly, we can help connect you with other people affected by Parkinson’s in addition to the forum - our support services are a great way of finding out how other people cope with Parkinson’s. We have a lot more info on this here - https://www.parkinsons.org.uk/information-and-support/our-support-services.

Best wishes,
Reah - Community Manager


#4

Hi Sue.
Cutting through all the bull you may have seen and heard in your life.
We are really all in this together.
Welcome
Hubby


#5

Hi Sue3

Glad you have found the Forum. I have found it very helpful, reading all the different views on taking, or not taking medication etc. etc. Since being diagnosed in January this year I have followed the advice of my neurologist and started taking Sinemet plus straight away. My tremor disappeared quite quickly and has not returned, and I have had no side effects.

Obviously as you will already be aware, we are all different, and have different reactions both to the diagnosis and to any medication suggestions. We are all able to make our own decisions and take charge of our own destiny, and I commend you on your attitude. Just keep doing research to find out as much as possible and good luck. Keep us posted as to how you are doing.
Knine
Audrey