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Parkinsons - Carers UK Forum


For issues related to specific conditions and disabilities.
Mum has now been diagnosed with Parkinsons disease.
Her symptoms, slight tremor, freezing of left leg/foot, shuffling when walking, slurring of speech at times, handwriting effected.

She has been put on medication, and is also having a CT scan in December to see if she has had a stroke or TIA.
She appears to of become incontinent too.

AT the moment she is in intermediate care in a reablement centre, what the final outcome will be after all assessments are done I really do not know.

Has anyone got any information etc.,
Hello Karen,
Sorry it's taken so long for someone to reply to you.
I don't have any information as such (sorry), but my auntie had Parkinsons for over 10 years and she decided to keep busy on her good days and crammed as much into those days as she could, even to the extent of riding her bike down town for a bit of shopping instead of taking the car or the bus.
All I can say is that on the better days, encourage your mum to do as much as she can, crosswords or drawing is good no matter what or how. Or colouring in simple pics (not those complicated pattern books, they might be too confusing and hard). It all helps with co-ordination and memory. Or making a scrapbook?
Difficult if she's in the reablement centre, but do the staff have activities for her?
Hope she's all right and that YOU'RE ok, too. Keep talking to us, we understand about things, if not having experience of specific things, it doesn't matter, just yap about whatever you want. You are welcome.
Take care.
Hi Karen, welcome to the forum. Can I suggest that you know what should happen before someone is discharged from hospital? As Christmas is coming up there may be pressure to get her discharged before the holiday - from my own bitter experience I'd suggest you opposed this at all costs as it's virtually impossible to get good cover during the Christmas/New Year holiday.
Hi Karen,

I'm sorry you had to wait so long for replies. It appears folk read your post but few have personal experience of caring for someone with Parkinson's.

How is your Mum doing now?

Have you looked at the Parkinson's website, here is a link just in case you haven't http://www.parkinsons.org.uk

Hi Karen.

I have an 80 year old husband who was diagnosed with Parkinson's disease 2 years ago. He had very similar symptoms to your Mum. Can I suggest that you contact Parkinson's UK who have tons of information, groups you can join and many other things of interest. We joined a group in Billericay, Essex and it was very good. There are singing groups and exercise classes also, for a nominal charge. The subscription to join Parkinson's UK is only £4 and it really is worth it. Hubby and I stopped going to monthly meetings as it was clashing with our church's Disabled Christian Fellowship group, also the events weren't near enough for us, but neverthe less the time we did go we enjoyed it and gained a lot of information and made a few friends too. Hope this helps, Chris.
Hello Karen, My Mother also has Parkinson's and suffers the same symptoms as your relative. She has ups and downs, one day she is quite good, able to walk without her trolley and do things then the next she will will be unable to move very well, be very shaky, and will need to be washed and dressed etc. At the moment she is having a down and cannot feed herself very well, and needs help eating. As has been advised before, contact your local Parkinson's association as they can be very helpful with advice etc. Parkinson's can be a huge challenge for the suffered and the carer, but there is help out there.
My husband was diagnosed in 2012 and of course is has been failing ever since. I gave up work in 2015 to care full time for him and it is so heartbreaking to watch him now. The drooling the shuffle the slurring just the final stages I suppose. I fear with the choking as this can lead to aspiration pneumonia.
my 0ther Half was diagnosed with idiopathic parkinsons 4yrs ago he has been on simonet in various doses since none of them seem to make him any better obviously because the neurologists have no idea what to treat him with. Are there others in this situation? He also has diabetes self managed no meds . He never feels well with no motivation to do anything more than TV or computer this was a man who was a competitive chess player dog trainer taking part in showing and now I cannot get him hardly out of the house because he has started having "turns" likened to being on a roundabout when a kid.Is this familiar to any one else. I have not explained it very well and obviously there is alot more.
Hi Brenda
My husband was diagnosed with Parkinson's over 10 years ago at the age of 54. I'm his carer. It isn't the end of the world, as PD isn't a killer. But it IS a f**!!**g awful thing, for the carer and family as much as the person with it.
What you need to know is that PD is different for every single person. As is medication, which works brilliantly for a few years, but takes a few weeks to work properly. If it doesn't make a big difference you need to question if this is Parkinson's as this is the only way to be sure; there is no test. There is a range of medication, so you may need to have it changed or added to, to get the best effects.
Parkinson's UK has a superb website https://www.parkinsons.org.uk/ Take a bit of time and look at it: it will answer many of your questions. You can also ring their helpline and speak to a Parkinson's nurse.
Locally, there may be a support group which you can both go to. Your GP may not know about it, so ask around or ask Parkinson's UK.
There should also be a dedicated Parkinson's Nurse in the area. Push to get their help - they know more than most professionals you will come across.
You might also want to request physiotherapy and occupational therapy. Thy help. As does any form of exercise.
None of this may be helpful for your mother, but it may be helpful to you to find out more. Message me with other questions - I've had years to find out! Though it doesn't stop me howling at the moon at regular intervals!
Hi Anne
I'm new here, but felt at home when I read of another PD carer who howls at the moon!
My husband was diagnosed 7 years ago but seems to have taken a massive dip these past few months. I'm pushing at consultants, Parkinsons nurse and GP but it seems to be an uphill struggle. Another GP appointment today so I'm hoping for some answers and relief for him.
The PD nurse says things only happen slowly, but if each person is different how can that be?
Here's hoping some positive action ahead. Meantime I try to be positive but accept the horrible face of this ghastly disease. It's a thief by stealth.
Good to feel less alone in my howling.