Hi. I just thought I would introduce myself as the daughter of a newly diagnosed parent. My mum is 66 on Wednesday and has recently been diagnosed with PD. Her symptoms are very aggressive as she is suffering from depression and anxiety which seem to be making her PD symptoms worse. My family and I are feeling very helpless as we do not feel she is getting the care and continuity of care that she deserves and we have found that most of the medical professionals we have seen are unsympathetic and in order to make sure she is receiving the correct appointments and medication we are having to constantly ring the consultants, GP and PD nurse. I was hoping someone might be able to offer some advice as to whether we would be better asking to see a PD specialist consultant or whether to go private so that she would get the continuity and quality of care she deserves. From Runninggirl
Welcome to the forum Runninggirl,
I hope and expect that you will find this forum as supportive as I have done in the past few years. There are people here who have gone through, or are still going through, the same situation that your family is facing.
The time of diagnosis is horribly stressful for all concerned and its easy to become anxious and consumed by fear. I'm really sorry to hear that you are not getting the support, care, advice and help that you need and deserve. Are you in touch with a Parkinson's support group? There will be one close to you (details are on this site or call the helpline). The people there will have a view of which neurologists are good for Parkinson's.
Going private is one way of getting a different neurologist and it may be worth doing that even if only for a short time.
I'd really advise you to call the Parkinson's UK helpline. The resourceful gang there can point you towards the help you need.
I hope that one way or another you can get access to the excellent support that is available from the right people. Whatever you do keep posting and let us know
Hello Runningirl - welcome. I am new too - and yes, the beginning is horrible - shock, grief, fear, and if you know others with parkinsons it does not always help if they are further down the line and you think is it going to be like that????. Ideally finding others who are at the same stage is really good. This Forum is such a great place to share safely with others who understand I am finding. Big hugs. Dinky x
my Dad (71)was diagnosed about 6 months ago he went private initially as he pays into a health care plan however he will now see the same specialist through the NHS (as the specialist said this was fine to do) he has made contact with his PD nurse but does find it hard to get her on the phone sometimes and this adds to his anxiety however he is slowly but surely changing the dose of his medication and it does seem a little bit of trial and error but he has some very positive days and is able to maintain his lifestyle at the moment, and live very independently (having lost his wife/my mum many years ago) keep the faith as best you can its not easy but should get easier as it goes along, hope that helps a bit take care
Hi again Runninggirl
Will just mention I (as the other half) of someone with PD am the one that was hit with the anxiety and depression and among several things, a huge help has been a wonderful book called 'The Worry Book'. It is a useful tool I look at again and again for reminders when I am struggling. Just google the title and on Amazon it comes up with pic of birds flying on the cover. do the 'Look inside' and see if it might suit your Mum. Dinky.