I am very fortunate to have an amazing care team. A trio that includes my Doctor, my Neurologist and a PD specialist nurse. I value them enormously. We have a great relationship, we are on first name terms, send notes and e mail regularly.
I am not just their patient I am a resource. I provide them with information and support. We all learn and improve. I talk to them frankly and candidly, there is nothing I couldn't speak about.
I try to explain how I feel about things so they get to know me better and what's important to me, it all helps. I always end my appointments by asking if there is anything I can do for them, you'd be surprised sometimes there is.
They've seen me laugh and cry and every emotion inbetween. They'd like to fix me but they can't. That must be very hard. To help I tell them they do a good job for me, and not to worry I'm coping.
If I pick up the phone I can see any one of them, the same day, I know, I've done it.
Once I couldn't drive, they sent someone to get me.
When I was really low this year they phoned me every day.
Is this exceptional? Is this what you get?
I believe in investing in any relationship where it's long term and hugely important. This includes my health care. It's so worth it.
How lucky you are to have such an excellent support team. I am lucky in that I have an excellent Consultant and two Parkinsons Nurses. I am given extra appointments if I am not happy with my condition, I also have regular appointments with a Physiotherapist and have just been seen by a speech therapist and a dietician.
I consider myself extremely fortunate in my health care especially when I know some people do not have access to any Professionals. It seems to be a Lottery linked in with where you live.
It is hard to believe that such health care is not available for all Parkinsons patients.
My jury is still out. I have a great GP who made sure to get a second opinion before accepting the Parkinson's diagnosis. I have an experienced PD consultant but the time I have allocated with him is very short. He's very medication focused and isn't able to take the time to discuss options and side effects so I've probably held off on that longer than perhaps I might. Which may be a good thing. I've not got off to a great start with the Parkinson's nurses who invited me to sign an undertaking to 'co-operate' with their action plan, which I politely declined. They also have a rather 'tick box' approach, relying heavily on pamphlets. On the other hand, I'm deeply grateful for our NHS in the UK - free at the point of use - which has many pressures on it, not least time. When I attend the PD clinic, it's standing room onmy. However, when I read how some of you have trouble getting your insurance companies to pay for drugs such as Aziclet, prescribed to me without demur, I realise I'm fortunate in many respects. I'm grateful for this website which is a source of much information and handy tips - I just have to be judicious in what I share with my medical advisers, who prefer a more passive approach.
I hope as my journey continues that I am able to develop more of a partnership with them, as you so clearly have, similar to the one I have with my GP.
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