Hi - I have just joined the forum and I’m learning how to navigate the forum so forgive me if I don’t get this my first post quite right. I was diagnosed with Parkinson’s just over 4 years ago and looking through all the various topics and threads there is a wealth of information and help out there and it’s comforting to know you are not alone in the fight against this terrible disease. What I have found troubling this last 4 years is that during this time I have seen six different consultants. With each one you have to start at the very beginning and spend valuable time going through your Parkinson history. They all seem to have different approaches regarding medication and its a bit disconcerting considering you are lucky if you get more than a quarter of hour with each one. Because of this time restraint I usually end up searching the net to find out more information on what was being suggested.
DJDave, yes, this is a difficult one. We think that we have the best support we can have in our area but I was not happy to learn that other parts of Britain do not share the same level of support.
And, this worrying thing about having to repeat yourself at every meeting with your PD support team instead of receiving extra support and care is giving an anxious time to all.
People with PD, advanced stage 3 like my mother, can’t stick up for themselves in such situations. And Yes, a major part of her time with her consultant is used up going over old ground and just talking about meds.
Before my Dad died he was mother’s main carer. But he was laid-back, in awe of the consultant …
We are all individual and have our own ideas. That’s evident in life too. But if we want to remain passive and allow these professional people to continue to treat us this way then it will continue. Surely, we must tell them how we feel … not tell our friends/family, who can’t help.
Our PD nurse is a gem. Have you a PD nurse in your area too? Mother’s PD is pretty advanced and she is also laid back and won’t say anything … so I say it for her! Nicely of course.
It is important for you to receive the best that you can receive. And it is also important that you get the best medication that you can get.
Please tell them how you feel so that they can help you?
The PD Forum/UK Site is full of information and support too. The helpline is there and please don’t be afraid to use it. I did, many times, and they pointed me in the right direction each time. I have forgotten how many times I’ve leaned on them just for a chat …
I do hope that you will sort things out okay.
Take care.
Hello DjDave this Tom USA. There are more of us getting parkies every year. Age,pollution, and so on. USA has a shortage doctors that specialize in Parkinson’s same as the UK.
No matter where one lives the effects are the same. But with those effects (symptoms) are different which ones we have and are going to get done the road. Also how fast we will progress.
You may have read what I was told by another PD person in the USA, that I pass on.
Keep a daily log on sleep, symptoms experienced, how those symptoms change between doses, how your thinking is, if you are slowing down. Well you get the picture.
When I went to the doctor the next app., and let her see the log she asked far less questions. When I left that appointment with the doctor it clearly was a benefit. She was able to adjust ma medicine and timing of each dose that improved my daily function.
I hope this is of some help. Seems like 15 min. time is the going rate for a doctor to assess our needs. Tom USA.
Hi Dee. Thanks for your reply. The first I have received since joining the forum a few days ago. I am still feeling my way round the forum. Since being diagnosed just over 4 years ago I have found it’s always best to be prepared and carried out a lot of research in most aspects of PD. I help run a PD Warrior group of 14 people and within the group we have people of all ages and stages of PD and it’s a good supportive group and we learn off oneanother. So sorry to hear about your mother but it sounds that she is in good hands.
We do have a Parkinson Nurse but she is new to the role and although very supportive she has to refer back to the consultant for direction and cannot prescribe medication. Thank you once again Dee and no doubt are parts will cross again on the forum.