Hello - New Member :)


#1
Hello all,

My mum was diagnosed just under a fortnight ago - she's 68. After months of gradually becoming slower she suddenly deteriorated a few weeks back and was barely able to lift herself up off a chair. She would also freeze while walking and was starting to lose weight. The GP didn't seem very interested so we ended up taking her to A&E and they kept her in, to diagnose a few days after admission.

My dad is her main carer.

I suppose I've come here to learn more about Parkinson's and also to share my experience thus far. I was surprised that my mum was discharged a day after diagnosis with no further information - she's been given sinemet and has been steadily increasing the dose as instructed over the last week and a half.

Is she supposed to just keep taking it and then see the GP if something is not right? Should we have been told anything else - do follow ups ever happen or am I being naive in thinking that surely this would happen?

My other worry is my mum's attitude. We can just about cope with the physical issues and even the aggressive episodes but she is saying that she doesn't want to take the medication anymore as she's convinced it's making her feel worse. It's definitely improved her mobility by a large degree (she even vacuumed yesterday which she hadn't done in months) but she is waking up early every morning (around 2am) and spending hours in a bad mood, shouting at my dad, saying we are trying to kill her :( I can't figure out if the medication is causing this, or whether this would have been even worse had the sinemet not been started.

Sorry - that turned into a bit of a ramble :)

x

#2
Hello EE,

Well it's great that your mum has been diagnosed and that she has Sinamet which is improving her movement. It's not clear to me from what you've written whether she was diagnosed and prescribed for by a neurologist whilst in Hospital or by the general medical doctors. No disrespect to the Gen medical doctors but it needs to be a neurologist and preferably one with a particular interest in Parkinson's, although that might be asking a bit much. The behaviours that you described from your mum are exactly the reason why it needs to be a neurologist who determines the medication and who will change that dosage and timing when they hear about what's happening.

The drugs that we take for Parkinson's are powerful and the side-effects can be mighty. However changing the time of day we take them or changing the drug for one of the others can make the difference between an acceptable and unacceptable treatment. If your GP isn't interested and you're not able to change him or her, then you could approach the PALS group at your local hospital as they can advise you how to make an appointment with a neurologist quickly. But you must tell people what's going on and you need to ask for help in dealing with it and not to contain it within the family because it's not necessary.

Also on this website if you look for the publications section you'll find all manner of useful documents that you can download for free which will tell you a lot about the condition and the side-effects and so on.

By the way, your experience of being diagnosed, prescribed and sent on the way with no information about four or anything of the sort is unfortunately not that unusual. It seems to be beginning to improve in some parts of the country but by no means everywhere and that only fairly recently. But there's lots of people on here who will give you the benefit of their experience. There's lots of really good written material in another part of the website freely available and I do hope that you manage to get your mums dosage and timing of tablets changed to something which doesn't have her up in the night as you described. You won't have to read very much on this forum to find out again these are not extreme experiences but please do take it from me that you need not to put up with them to ask for and expect to get help from the medical profession at the very least in terms of getting your mums medication right for now.

Best of luck with all that. Do let us know how you get on.

Best wishes

Radar

#3
Hi EE and welcome to the forum.

I would echo everything Radar says and would add that the helpline (phone number in top left hand of the page) would also be good source of help and advice.

Keep us posted.

Worrals

#4
Dear EmeraldElphie

I’m appalled at the way your mum has been treated; as Radar has pointed out, she should have been referred to a Neurologist as soon as Parkinson’s was suspected and a follow-up appointment should have been made. (Of course, it’s always possible that you will be receiving a letter from the hospital soon.)

Two weeks is not long enough for the drugs to settle and your mum needs to be patient as it could take up to a couple of months before she starts to feel better, but she does need access to a person who is qualified to monitor her progress.

I suggest that you go back to your GP and ask for clarification. If your mum has not been assigned regular access to a Neurologist, I would insist that the matter be investigated.

Please keep us posted.

#5
I second everything other have posted
And they wonder why people turn up at A & E !!!!! 68 is no age these days and the deterioration you describe should have triggered something off with your GP.
Ideally your mother should see a neurologist with a special interest in movement disorders but this depends on whether you live near a large town or out in the stix. Some people in my age group (I'm 73) are dealt with by a Geriatrician with a particular interest in PD.

When you do see a neurologist its my impression that you are lucky if you get more than a few minutes even at the point of diagnosis. So make sure you have written down what you want to know because they are not very forthcoming partly because people's symptoms, progress and reaction to medication vary a great deal so they may not be in a position to give a definitive answer, and partly because the old fashioned Consultant as God attitude seems to persist in neurology, so that they don't seem to feel any duty to explain themselves. The Parkinsons nurses which many areas have, usually have more time to discuss things and the neuro is usually only too happy to pass you on to them for ongoing management of the condition. The helpline top left can let you know if there is one in your area and can give a great deal more information besides.

Let us know how you get on - its all good information for others who find themselves cast adrift so to speak

Best wishes

#6
Hi
I can certainly recommend you getting yourself a Parkinson Nurse . Mine is a godsend to me , making me feel as though I'm not on my own in facing this illness . She's always available on the end of the phone to offer advice or other help and indeed visited me at home when I couldn't make a hospital appointment .

#7
Thank you everyone for your advice and welcome. I hadn't had the chance to log back on due to all the events at home.

After a few weeks of taking Sinemet my mum's GP decided that she had to stop taking it and the dose was gradually reduced - for the last 5 days she has had no Parkinson's medication. The reasoning being that the GP wanted to see if her aggression and moodiness was a side-effect of Sinemet or not.

Her mobility has of course now reduced, she is struggling to walk and is very shaky and she has spent the last 24 hours in distress and in a very bad mood. The GP has said he's going to make an urgent referral to a psychiatrist for her and until that appointment has happened he won't give her an alternative to Sinemet or put her back on it.

We're at a bit of a loss really, it feels like we're just going to have sit tight and try to cope until this appointment arrives. I don't understand how the hospital seem to have one opinion and yet the GP has now put things on hold and is going down a different route. It's very tiring but I can't begin to imagine how my mum is feeling :(

#8
the NHS is a great concept but sometimes(often?) in practice its complete crap.
why your mother should be sent to a psychiatrist rather than back to the neurologist who gave her the drugs in the first place (presuming there was one?) is beyond me. now there will be three people diagnosing and medicating instead of two. the resulting chaos is predictable. how a gp can cancel a specialists prescription and then send the patient on to another person is unbelievable. i thank god i've moved to australia. you might want to consider that as an option!