Parkinson's - any additional support options?

boots_babe

Hi all,

I'm worried sick about my dad and thought it worth asking if anyone knows of further help options for him.

Long story short, after ongoing balance issues and some other symptoms, my dad had various tests, and was diagnosed with Parkinson's in March this year. At that point, it was so early that the MRI came back negative for Parkinson's, it was only at a follow up consultant appointment that they noticed something very minor about how he held one arm, that led them to send him for a DaTSCAN which then confirmed the diagnosis.

Dad was never directly told his diagnosis. All he got was a copy of the letter that was sent to his GP, which said he'd been diagnosed with Parkinson's and asking the GP to prescribe levodopa. 

At the time I tried to encourage dad to seek a follow up appointment but he didn't see the point. So he took the levodopa and that was that.

Mum and dad are old school, they innately trust the system and don't like to cause a fuss. After a few months of no improvement, I had been trying hard to say he should seek a follow up to ask about options, but they refused. I found out about Parkinson's nurses and eventually they agreed to go. First appointment was beginning of September, and my parents came out saying how wonderful the nurse was and were glad they went. Nurse didn't want to try multiple changes at once as then we wouldn't know which one helped, which makes sense. So she said to increase the levodopa, and come back in 3 months. 

If that hadn't helped, she said she would refer him to some sort of class (don't know the details) that teaches you movements of some sort to help. It's not available on NHS or even in all parts of the country, but the Parkinson's nurse had access to it. It apparently has a 100% success rate at improvements, so sounds fantastic.

The problem is, from being so mild that the MRI came negative for Parkinson's in March, my dad has gone very very rapidly downhill so quickly. His walking slowed more and more, his balance issues got worse and worse. He now cannot walk more than a few yards, and that is at a painfully slow shuffle, with lots of wobbling and struggling. 

Mum and dad have a caravan in Wales, in a very quiet out of the way place. Dad lost his balance and fell over, and could not get himself up. My mum is in a wheelchair (dad is her carer) so she couldn't help. He was there for ages, and eventually someone came along who helped him up. 

Last week mum has told me of other issues that are starting. Firstly lots of toilet problems which she didn't go into detail of, but results in her doing lots of difficult washing and cleaning up - which she can barely manage with her own disability. 

More worryingly dad's now started memory issues. Couple of examples - mum found him sat in silence and asked what he was doing, he couldn't remember how to turn the TV on - as in just turn the power button on, not even fiddling with the TV guide or anything. Another is that mum had a conversation with him about having to take his pills late as they had eaten slightly late. 2 minutes later she found he'd gone ahead and taken the pills, and couldn't remember the conversation.

So all in all, I'm extremely worried about them both. Dad is mum's carer as she's in a wheelchair - she can get around the house with a crutch, but can't do much of the house chores etc, dad does those. But due to the memory issues mum is now having to hover around him and check on him constantly, as he keeps doing silly things and she doesn't dare leave him unattended for long. She's now not sleeping as a result, as every time he gets up in the night (frequent now due to Parkinson's) she is dead alert, listening, to make sure he doesn't fall over. 

After much pestering from me, mum finally rang up to chase up the promised follow up with the Parkinson's nurse. She was told it wouldn't be until January which is clearly far too late. After 'begging' as she put it, she was given an appointment 6 weeks from now. But honestly, if dad goes down as much in the next 6 weeks, as he has in the last 6, I don't know what is going to become of them.

I'm sorry for the long post, but I am hoping someone out there with Parkinson's experience may know, if there are any other avenues for help that I could try for them? The nurse seems a great contact, but beyond that is there anything else? I know there is nothing else via the NHS, as the nurse has said there is next to no funding for Parkinsons.

Thanks for anyone who has read all of that.

Keep_pedalling

Sorry can’t help with your question, but have both your mum and dad put lasting powers of attorney in place yet? if not you need to encourage them to do so as as matter of urgency otherwise you could find yourself in great difficulty in dealing with their health and financial issues when they are no longer capable of doing so. 

boots_babe

Keep_pedalling said:

Sorry can’t help with your question, but have both your mum and dad put lasting powers of attorney in place yet? if not you need to encourage them to do so as as matter of urgency otherwise you could find yourself in great difficulty in dealing with their health and financial issues when they are no longer capable of doing so. 

Yes they have, my mum did this many years ago and I have copies safely tucked away.

[Deleted User]

Has there been an application for Attendance Allowance ? It is not means tested, and might allow some extra money towards paying for some more  care . Parkinsons nurses are a bit of a postcode lottery I think and over-stretched , though helpful.  Do read everything on https://www.parkinsons.org.uk/   including whether there is a local support group.  See in particular the possible therapy options, https://www.parkinsons.org.uk/information-and-support/therapies-parkinsons  But DO try and encourage your parents to go back to the GP, the right dosage of medication can make a difference.

sheramber

My friend's husband has Parkinsons and he finds the local support group very helpful.

Grumpy_chap

she would refer him to some sort of class (don't know the details) that teaches you movements of some sort to help. It's not available on NHS or even in all parts of the country, but the Parkinson's nurse had access to it. It apparently has a 100% success rate at improvements, so sounds fantastic.



My Dad had Parkinson's and deteriorated to a point that he could not cover any more than a couple of steps.
With the intensive rehabilitation physiotherapy he became able to walk the length of the garden from his arm chair - some 100 feet or so.  An absolutely amazing change.
Take a positive approach to this rehab if it is available.


In a broader sense, are your parents able to get external carers?  Your father won't be able to continue as your mother's carer.  Sounds like they both need carers now.

OutdoorQueen

Some suggestions, apologies if you already have though of these:

Once you have been awarded Attendance Allowance, a claim can then be submitted for a Council Tax reduction.  It’s a horrible title…..Severe Mental Impairment. Claim via your local council.  They should have a form on their website.  

Further details on this link:

https://www.moneysavingexpert.com/reclaim/severe-mental-impairment-dementia-council-tax-rebate/

Consider contacting your local adult social care team ( county council or equivalent) and ask for a care and support assessment.  This will help identify care needs and could lead to a care package, but they might need to fund it if the6 have savings

https://www.ageuk.org.uk/information-advice/care/arranging-care/care-needs-assessment/

Also ask for an Occupational Therapy assessment.  They will then be able to suggest suitable equipment to help around the house and may be able to supply some equipment free of charge, eg raised toilet seat, grab rails etc.  

Also, consider a blue badge.  

This might help complete the Attendance Allowance form
https://www.ageuk.org.uk/information-advice/money-legal/benefits-entitlements/attendance-allowance/what-to-include-in-your-attendance-allowance-application/

elsien

 Not specifically Parkinsons related, but your dad would be entitled to a care act assessment of his needs by the local authority, and your mum would be entitled to a carers assessment.
this would then look at support that might help them such as carers coming in, for example.

Support would be means tested, but might also be a way of being signposted to other services. 

He really needs to be going back to the GP and pushing for more help. Continence assessment, memory assessment, chasing up the Parkinson’s nurse. GP tends to be the gatekeeper.

boots_babe

[Deleted User] said:

Has there been an application for Attendance Allowance ? It is not means tested, and might allow some extra money towards paying for some more  care . Parkinsons nurses are a bit of a postcode lottery I think and over-stretched , though helpful.  Do read everything on https://www.parkinsons.org.uk/   including whether there is a local support group.  See in particular the possible therapy options, https://www.parkinsons.org.uk/information-and-support/therapies-parkinsons  But DO try and encourage your parents to go back to the GP, the right dosage of medication can make a difference.

Thanks Purbeck14. I don't know but I will find out, I've just read up after seeing your post and sounds like something he should definitely apply for.

I did find that there was a very local support group, however, my dad is a big introvert, he struggles to talk to people he knows, let alone strangers. So I think that is one uphill struggle I won't win unfortunately.

boots_babe

Grumpy_chap said:

she would refer him to some sort of class (don't know the details) that teaches you movements of some sort to help. It's not available on NHS or even in all parts of the country, but the Parkinson's nurse had access to it. It apparently has a 100% success rate at improvements, so sounds fantastic.



My Dad had Parkinson's and deteriorated to a point that he could not cover any more than a couple of steps.
With the intensive rehabilitation physiotherapy he became able to walk the length of the garden from his arm chair - some 100 feet or so.  An absolutely amazing change.
Take a positive approach to this rehab if it is available.


In a broader sense, are your parents able to get external carers?  Your father won't be able to continue as your mother's carer.  Sounds like they both need carers now.

Grumpy_chap - thanks for sharing, that sounds like a fantastic improvement. It's great to hear of a real person's success with that type of treatment, will definitely be trying to get him a place on the course that the Parkinson's nurse mentioned.

In terms of carers - at the moment, no chance. They are both very difficult to get them to go out of their routine as it is, so having a stranger come in is not something they would accept. And that's before you then think from the angle of, is dad ready to accept that type of support - he's not. Unfortunately, I think he's going to have to have a few falls/incidents before I would have any chance of getting them to consider that. 

I tried last week to suggest we put up a stair rail for them - just a normal one, not a disability one or anything. It was an outright no.

boots_babe

elsien said:

 Not specifically Parkinsons related, but your dad would be entitled to a care act assessment of his needs by the local authority, and your mum would be entitled to a carers assessment.
this would then look at support that might help them such as carers coming in, for example.

Support would be means tested, but might also be a way of being signposted to other services. 

He really needs to be going back to the GP and pushing for more help. Continence assessment, memory assessment, chasing up the Parkinson’s nurse. GP tends to be the gatekeeper.

I agree re the GP, and have been trying to pester them (nicely!) about it. Unfortunately it seems that the Parkinson's nurse they saw, told them that the GP can't do anything with Parkinson's, that even medication changes must go through the Parkinson's nurse. So they have it in their heads the GP is of no help, which I am certain is not actually true.