Diagnosed in October 2019, so what should I expect now?

Hello, I visited my consultant on October 24th in Sheffield, who confirmed I have Parkinson’s.

The Parkinson’s Website has been most helpful, and I’ve now informed the DVLA about my condition so I wonder what the consequence of that will be. I’m driving without issues at the moment.

A friend of mine told me that I should ask for an MRI Scan, but should I speak with the Parkinson’s Nurse about this? I’m wondering what it might show?

My consultant thinks I’ve been affected with PD for about 2 years now, and I’ve just turned 60. I’ve been prescribed Madopar and I think I’m beginning to see some benefit, but it’s early days yet.

I’ve joined a local Gym and bought an electric bike to ensure I keep myself mobile, and I’ve been recommended to take Pilates, at the Gym which I’m attending.

Is there a group of PD patients operating in South Yorkshire? I’ve joined this forum, but I’m wondering how I might meet fellow patients near to me.

Hi quadnutter,

Welcome to the forum! We hope you find comfort and knowledge amongst the community.

It’s great to hear that you’ve been finding our website useful. If you haven’t come across it already, we have a page dedicated to exercise https://www.parkinsons.org.uk/information-and-support/exercise which you may find interesting.

You can also search for your local Parkinson’s group via the website > https://www.parkinsons.org.uk/information-and-support/local-groups

All the best,
Elan
Moderation Team

I had a Datscan to confirm my diagnosis.

Hi @quadnutter. Welcome to the forum.

I was diagnosed just over 2 years ago at 59 years old. Before the diagnosis I’d been referred for an MRI scan to rule out a brain tumour and then after that I had a DATscan to confirm the PD diagnosis.

I was prescribed rasagiline for the first 2 years and then added sinemet last August and the medication seems to work fairly well for me but the sinemet wears off a bit too quickly.

When I informed the DVLA they wrote to the consultant asking if I was OK to drive and then issued me with a 3 year medical review licence so I am still able to drive with no problems.

All the best

Clare

Hi.there…Think my Husband,who was diagnoised 3 years ago,but looking like he had PD for a few years before that, has definately drawn the short straw with his care…he was diagnoised after I insisted he was seen by a consultant due to his symptoms. After 5 years of miss diagnosis by our GP…he saw the consultant and was diagnoised within 10 mins of walking through the door…he has not been offered any other scans etc to confirm the PD and was just given sinemet at the appointment and told to carry on.3 years down the line and his support is minimum…he has not been seen by a consultant or a PD nurse for over a year…I get really angry at times about this and wonder if we are the only ones who seem to have drawn the short straw?

1 Like

That sounds tough, @Babesbrown! I do get reasonable support here but only if I push for it. When I was diagnosed initially the consultant said she would refer me to a PD nurse but 6 months later, when I’d still heard nothing, I phoned the PD nurses who said no referral had been made so I self-referred.

After the initial diagnosis the consultant said I would get another appointment in a 6 months. Again I didn’t hear anything for nearly a year at which time the PD nurse told me that if I wasn’t seen within a year then I would be taken off the consultant’s list and would have to get my GP to refer me again, so I phoned up to make an appointment. I think I’m supposed to see the nurse every 3 months but I went 18 months after the first time without making another appointment as I didn’t feel much had changed but am seeing her more regularly now.

the dvla are pretty good. They’ll give you a 3 year licence and review it after consuting with your doctor/consultant. ive had pd for 6 years and they’ve just renewed mine For another 3 years. The insurance company didn’t ssem bothered either which was a relief.