Please help me to help my mum


#1
Hi all, first post so please be gentle, but I'm getting very frustrated at the clinic not helping my mum as much as I think they could.

Everytime we go, they just don't seem to be that interested.

Her medication at the moment is Ralnea XL Ropinirole (12mg X 3 per day) and Madopar (62.5mg X 6 per day)

This Madopar seems to be a mixture of Levadopa and Benserazide (50mg+12.5mg) and she was placed on this 6 months ago only after I kicked up a fuss that the Ropinirole wasn't doing anything.......this Madopar hasn't made any difference either.

She is 75 and just seems spaced out all the time, conversation is difficult and she is still shaking.

We're going again next week to see the registrar (never get to see the main consultant) so does anyone have any ideas what to suggest?

Any help would be appreciated!

#2
Welcome Audi321
You can be very sure that the boys and girls in the forum will treat you gently.
I can't comment on the particular drugs you describe.

Do you have access to a Parkinson's nurse? Everybody raves about them and I think they can be particularly effective in the case you describe where your neuro seems uninterested.
If you can't track down a PD nurse in your area try the helpline and they will point you the right way.

The only other advice is to keep arguing your case. Don't give up, don't sit back, don't be quiet. It sounds like you are doing that already.

EF

#3
Hello Audi welcome . My husband is 77 and has been diagnosed for about 4 years .
Having said that I am sure he has been troubled and struggling with it for many years .
He is taking Sinemet plus and Rotigotine . His mobility is very poor but since on the patches his mood/mind seems to have improved .

Whenever we go to see the consultant I write down and keep a record of all the symptons that we worry about . My husband has dificulty in explaining and doesnt like talking about it .

That way I get things off my chest without waffling on . The consultant always seems pleased and shortens our consultation .

#4
Hi Audi,

You don't say how long your mum has been diagnosed. Ideally, the consultant to see is a neurologist with a special interest in movement disorders. But of course it does depend on where you live as to how practical this is and sometimes much younger patients end up with a geriatrician with a special interest in PD. I was 69 years old when I was referred by my GP to a neuro and I checked up on his qualifications before I went anyway. However, do bear in mind that it is your right to ask for referral by the GP to a different specialist if you are not happy. No reasonable medic will object to this

#5
She's been diagnosed about 4 years. Does anyone know where I can find a dedicated nurse from?

#6
hi ive ben diagnosed for 10 years now and the last time i saw the consultant was when he told me ten years ago!!
the parkinsons nurses are good but i may be nice to see this mythical being once a decade
and if i do ever get to see him will be weres this cure he said would happen within the next ten years
best of lucck with your mum and keep fighting her corner the more noise you make the more people take notice xx