I would be grateful for advice about getting a second opinion (private or NHS). I am, and have been for a long time, unhappy with the “care” offered by the local Parkinson’s team and as a result have a strongly nagging feeling that my OH could be on a different medication regime that would positively impact his condition. But he is now classified as “advanced”, has no mobility and I am wondering what if any difference it might make at this stage - it is not as if I want to be be told “if only you had come to us sooner”.
So any thoughts as to what I should do - and - if it is to seek another opinion, how to go about that - and whether you can recommend someone accessible in or from the West Midlands.
Hi Pippa,
You arent the only one who has had that nagging feeling! I did with my OH and I walked…twice in fact.
My OH was 41 when dxd and hes now 60 and also classed as advanced but his neurologist is nothing short of amazing. We are with Coventry & Warwickshire Dr Lucy Strens
In 3 months he had a new medication regime, his sleep is sorted, his dyskenisia is better and his “onlines” are far more stable. She was recommended to us by our GP actually so I think Id start there.
We did see 2 private Neuros…One was Nuffield in Birmingham and then one at the QE.
Wherabouts are you? Im in S-O-A
Best Wishes
Beth
Hi Beth,
Thank you so much. Will get on to it straightaway. We are in Wolverhampton ( spent yesterday at Trentham Gardens…beautiful! … did you know that carers get in free with their “disabled” person , and if you can prove with paperwork their condition/disability benefits, two carers can go in for free?)
Hi Pippa,
I know Trentham Gardens well. I used to have a shop there when it first opened. You can also get into cinemas for free too…same deal which is pretty cool
Do you have a Parkinsons Nurse? If so they would be worth talking to. Also if you aren’t already, Id contact and register with The Carers Trust ( you should be able to get the number via your local council. They have been a great support for me.
Good Luck and do let me know how you get on
Best Wishes,
Beth
Will do.
What kind of shop did you have? I have known of the place for many years but only recently started visiting and was very impressed on first going…the gardens are looking lovely right now and they have some really beautiful natural sculptures and an amazing display of giant metal dandelion heads/ clocks in various stages of being windswept.
Used to have a cinema card but let it lapse when I couldn’t see His lordship sitting through a whole film
I opened the store when they first built Trentham and I believe its still there - opposite the restaurant pretty much by the entrance its the Outdoor Clothing & Travel Company.
The restaurant was one of my favourite lunchtime haunts when I was working up there…that and the bottle shop up on the right ( not sure if its still there)
I haven’t been in a fair while so I bet its grown into itself a lot more now and the original plans always did look impressive.
Best Wishes,
Beth
