Hi everybody, I am new to the forum, and any help would be much appreciated.
I have a close family member, G, who has a tremor in one hand and arm. G’s GP referred him to a General Neurologist (not specialising in PD) many months ago.
At this appointment a Registrar saw G, said he suspected PD but would speak to the Neurologist later that day. The Registrar rang that evening and told G he had PD and would need to take Madopar, and would be referred for a brain scan, but no appointment as yet. The hospital gave no advice on what to do next, and later G found out he is out of the catchment area for a PD nurse.
G. saw a GP over a week later, who appeared to have little knowledge of PD. G asked about a Datscan, but the GP had never heard of it. G is reeling from all this and to be honest so are the family as we don’t know how to support G.
@Myrt5 G should ring the Parkinson’s UK helpline on 0808 800 0303 and speak to one of the advisors and nurses on there. they will be able give lots of information to help him.
Hello @Myrt5, and welcome to the forum. We’re glad you reached out.
It sounds like this has been a confusing time for G and for the family. Getting information in a short phone call and then feeling unsure about the next steps can leave many questions.
It can help is asking the GP or hospital team for a follow up appointment so G has the chance to talk things through, ask questions, and understand what the plan is.
For supporting G day to day, many families find it helps to listen, take things step by step and learn about Parkinson’s together. We have information about Parkinson’s, treatments and what support is available on our website, including how to support a loved one with Parkinson’s: www.parkinsons.org.uk/support/caring-for-someone
You’re also welcome to keep posting on this forum. Many people in the community have been through similar early stages after a diagnosis and may be able to share their experiences. Thank you @johanmb for mentioning our helpline on freephone 0808 800 0303. We’re here if you need to talk things through, in your own time and at your own pace.
The moderators, and Johanmb, have given great advice, the help line is amazing, really do contact them.
The DatScan is, in the majority of cases, able to confirm PD, but not always, there can be incorrect readings on both sides.
The best is, being able to see a good Neuro, and let him/her give you advice based on their thoughts on the various aspects.
I believe that getting an appointment with a Neuro in the UK is next to impossible, and you would have to wait up to a year, however I really have no idea if that is fact or not.
@CliveV The waiting list length depends on area, for me in North Essex ( the posh bit) it was over 40 weeks for 1st appointment, another 38 weeks for 2nd appointment and once DatScan done it was (with some EMAILS to PALS) 27 weeks for results phone call and 1st set of pills issued.
Good evening Myrt5 .. I am 72 & have Parkinson’s and a number of other exciting ailments.
I would have very little faith in a GP that hasn’t heard of a “datscan“ .. A datscan is a diagnostic tool for Parkinson’s, it measures the amount of dopamine in our brains. As others have said it is not 100% reliable. I have had three different neurologists examine my datscan and come up with three different diagnosis.
There is no cure for Parkinson’s, there is only dopamine replacement medication like Co-careldopa [aka Sinemet] and Madopar and others that help moderate the symptoms. This medication does have possible side effects.
There is a lot of expert guesswork in a Parkinson’s diagnosis. There are around 9 different types of Parkinson’s and over 40 different Parkinson’s symptoms.
Of all my ailments Parkinson’s bothers me the least now. Of course it was a shock when first diagnosed. But compared to cancer and an aortic aneurysm which I have, having Parkinson’s is the least of my worries.
Hello Cive I have Benenden Health insurance. It costs £15.85p a month. After 6 months of membership you get cover for Consultations with neurologists and scans etc. Even for existing conditions. A condition of the policy is that you cannot see the NHS consultant within a reasonable timeframe.
I have seen 3 neurologists privately through this policy. Only had to wait about 10 to 14 days.
