Parkinsons/dementia slow diagnosis - is this normal?

[severalsnapes]

This is all very, very new to me, so would greatly appreciate some advice/shared experience. For a while now (a year or more) we've been a bit worried about a decline in my lovely FIL - nothing huge, but some signs of both physical and cognitive decline. With Covid, we hadn't realised that things had progressed a bit more than we'd thought (including a couple of worrying 'markers'), and we've just discovered that he's sought medical advice. Having googled his symptoms, I'm quite concerned that he might have either Parkinsons with the start of dementia, or possibly even Lewy Body Dementia (which seems scarier). Anyway, it's not always easy to get accurate information out of the ILs as they're very stoical, non-sharing types, but they've apparently seen a doctor to whom they were referred by the GP, who's told them that it's 'probably' Parkinsons but that they should come back in 6 months to see how things are going.

Now, I'm no expert at all, but everything I've now hastily read suggests that speed can be of the essence with degenerative neurological conditions, and that it can be important to start on meds sooner rather than later. But at the moment they now seem to be stuck in limbo for 6 months. Is this normal?? Will they need to go private in order to speed things up, and are there other benefits in doing so, or is NHS the best route? They could afford private health if it's the better option, but I know that with some conditions, the NHS is the best place to be.

No, they mustn't wait six months. If they suspect Parkinsons he needs to be referred to the specialist, if its with Lewy Body its even more important.

It may not be Parkinsons but if the symptoms are that the doctor suggests it then they have to be seen by a neurologist. Personally if they can afford it pay for a private consultation, it's wrong but it's the only way to cut the wait time.

Sorry just re read your post, I get a bit carried away with these types of post. Please encourage them to go private, with a diagnosis they can continue on NHS.

I would advise that you request they ask to see their local Parkinson's nurse.
Was he seen by a geriatric consultant or a neurologist?
Did he have any scans?
Have you called Parkinson's uk? They will be able to give lots of advice about how to proceed.
The lack of medication maybe because it's at such an early stage. However, if Lewy Bodies, medications being ineffective would assist in this diagnosis.

Sorry comprehension isnt my strong point today agree with above, who has he seen? Do you think they are keeping it from you?

To a degree that’s what happened with my Dad we were told they could not confirm at the beginning but like you it probably was, how the consultant phrased it, by ruling everything else out as they had done it seemed to be Parkinson’s and that he would go on medication when the time was right as the meds can cause other problems. So to put him on it when he was coping without was un necessary. To start with he was only monitored regularly. (I think it was six monthly).

I don't think you should wait six months. Parkinsons AFAIK is fairly straightforward for a specialist to diagnose. But its right that the medication can cause problems so maybe that's why they aren't starting it.

Thank you so much, your reaction has confirmed what my instinct is screaming at me (that they need to see someone sooner). To answer your question, no, I don't think they're keeping anything from us - they approached us with the information in the first place, but they're just quite awkward and reticent when it comes to sharing personal stuff, so they tend not to give a lot of detail, and sometimes get defensive if you probe too much. My big question also is what nature of doctor they've seen, and in what setting. It definitely wasn't the GP, because I specifically asked that, but I don't know who it was. I did ask (thanks to google) whether they'd been referred to a Parkinsons nurse, but they rather backtracked and said they weren't at that stage because it wasn't a definite diagnosis (in spite of the doctor appearing to imply that it was very likely). Contacting Parkinsons UK is a good idea, thank you, I will see if they can help.

Sorry, cross posts already. Interesting that your dad also had six monthly reviews initially @pinkcattydude.

Oh and sorry no, no scans or tests yet I don't think. The Lewy Body possibility has only come from my googling, not from them or the doctor, so I might be catastrophising, but some of the symptoms seem to fit.

I'm very close with my mum and despite that she kept her Parkinson’s a secret to begin with, as I understand it, it's important to start medication as soon as possible as it slows down any progression but I'm not an expert

My mum had Lewy body dementia that was diagnosed following a scan. I would push for an official diagnosis as then you know what you are dealing with.

Thank you so much everyone, that's really helpful. I'm sorry that lots of you have been through this with your family.

Do you know if he’s had a brain scan OP? That seemed to be quite key to diagnosing MILs Parkinson’s. 6 monthly reviews were also the norm but only once she was diagnosed and they were trying to get the medication dose fine tuned.

Thank you. No, I don't think he's had any scans at all. I'm going to try again this evening to get to the bottom of exactly who he saw and what they did, but I'm fairly certain he hasn't had a scan

Are they willing to share letters / reports with you? And can they clarify who the “other doctor” is and what his speciality is? MIL was referred by her GP to (I think) an Medicine for Older People unit (her first issue was osteoporosis and it was during tests etc for this that her Parkinsons was picked up), and then to the Memory Clinic. I think it was the latter that arranged for tests, scans and eventually diagnosis. The tests take a while to do (done over 2-3 meetings), and might take longer just now. When the diagnosis was made they then received a letter confirming and explaining treatment. After every 6 month review they received a detailed letter with the findings / recommendations.

We had to do a lot of detective work: MIL was unable to tell us much due to the Parkinson’s, FIL is just really poor at understanding and retaining anything complicated or medical, and SIL who lived nearby was very reluctant to ‘annoy’ her parents by questioning them. They didn’t have POA set up, SIL and DH couldn’t call the doctor to find out as PIL hadn’t given permission. DH and I live overseas, so couldn’t pop round and see them. You are not the first frustrated DIL to come on here with these frustrations;-) in the end DH went back on his own, camped out at his parents, was shocked at how much his mum had deteriorated and basically insisted on seeing all the paperwork. So we were able to piece it all together then.

Can I ask what symptoms your FIL has? My FIL has started having tremors and seems to have suddenly aged in the last few months, becoming unsteady on his feet, having falls, now having to walk with a stick, sleeping a lot. GP has tried various medications for the tremors but nothing working so far. Hasn’t had a scan, which I am thinking we should push for. DH can be a bit head in the sand when it comes to illness and as his dad says everything is fine, he thinks we don’t need to worry.

It's been a combination of motor and cognition symptoms. On the motor side, he's had a bit of 'shakiness' but not a pronounced tremor. However, I would say that his movements have slowed down (including his walking), his balance has worsened and he's fallen a couple of times. On the cognition side, I wouldn't describe him as confused exactly, but his memory has got worse, and he's definitely finding it harder to make decisions, plan ahead, deal with finances and so on - it's hard to describe, but it's almost a sense that he's struggling to get his head around things, and he needs to keep checking that he's understood something correctly. This is ccompanied by anxiety about arrangements (unsurprisingly, as he's finding them harder to grasp). I know that all of those symptoms could be attributable to 'old age' or another cause, but the things that are worrying me most are a couple of other random symptoms which seem to be closely linked with Parkinsons dementia/LBD. First, he's suffering from REM sleep disorder (I'd never heard of this until a couple of days ago); second, he's lost his sense of smell. He's also having to go the loo frequently, which again is very common in older men, but can also be a symptom of Parkinsons/dementia (prostate problems have been ruled out). He's also sleepy in the day, which may or may not be linked to the sleep disorder.

Hope that helps, and sorry to hear your FIL is having some of these issues too @ineedaholidaynow. It's bloody horrible, isn't it?

I'm another one who doesn't think you should wait 6 months. They/you need to push for a Parkinson's referral asap and get him onto medication.

My dad refused any medication for the first few months but he was only 63 when he was diagnosed. He rather stuck his head in the sand at first and refused to accept it.

We're now nearly 14 years down the road. Even now my dad doesn't have a pronounced tremor but he has frequent falls so he uses a wheelchair. The physio was supposed to be getting him back on his feet again but it's been nearly 9 months since her last visit.

Much as a few posters mentioned having 6 months reviews, my dad's care has been very hit and miss for the last few years, even before Covid. It's heartbreaking to see him like this.

Thanks @WhatHaveIFound. I'm so sorry your dad's been having such a tough time. I can only imagine how hard it must be to watch the deterioration, when we're just at the beginning of it.

On the plus side, the ILs have now gone back to the GP and got a referral to a private neurologist. It might still be a bit of a wait I think, but at least the wheels are in motion.