What's up Doc: I am very fortunate to have... - Cure Parkinson's

Cure Parkinson's

26,583 members27,897 posts

What's up Doc

10 Replies

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.

CHH

10 Replies
Court profile image
Court

Hi Colleen.

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.

Sue

in reply toCourt

Yes I agree, makes a massive difference :-)

stevie3 profile image
stevie3

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.

in reply tostevie3

Sign their document / hmmmmmm that's not a good practise :-/

jeeves19 profile image
jeeves19

Which country do you live in? Couldn't help noticing you were watching Morecombe and Wise!

stevie3 profile image
stevie3 in reply tojeeves19

Me? I wasn't! But I live in England. I'm near London, in Surrey.

in reply tojeeves19

UK :-)

jeeves19 profile image
jeeves19 in reply to

Always thought you were American for some reason!

in reply tojeeves19

Hah! I'm so English!

jeeves19 profile image
jeeves19 in reply to

I'm in Sutton Coldfield.

Not what you're looking for?

You may also like...

." It's okay we love you" telling people that you have Parkinson's. and different responses.

Not many of my friends know that I have PD, I get tired of explaining how it effects me and that I...
Precious44 profile image

driving is hard to give up

Driving is hard to give up, especially for those of us who live several miles from a town, but when...
olpilot profile image

Off the Ropinirole Now What!!

I called my Neurologist this morning and he took me off the ropinirole (I was taking 3mg 3 times a...
Precious44 profile image

Xmas all wrapped up...

7 days and we will all be pulling crackers, eating too much (nausea depending) and generally ho ho...

What's Wrong with People?

What’s Wrong with People I love the crisp, fresh air Through my open window This new Spring...
jupiterjane profile image

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.