Dad - Parkinson’s how easy to get a diagnosis?

[Doubledoorsontogarden]

My DF lives a long way away (in the UK) and is recently widowed. I’ve spent a lot of time with him recently and I really think that he has Parkinson. Due to lockdown I only saw them sporadically last year, staying nearby not with them , as DM was shielding and subsequently has died (not covid) so I’ve missed the deterioration and signs.

I’ve looked at symptoms, every single one including feet, toe nails, smell and loss of, bladder etc etc is a yes. Every single one.

I’ve asked him to make a GP appointment, I won’t be able to attend appointment but I’ve asked him to list the symptoms, I’m actually going to write them down. What do you think are the chances of the GP connecting the dots and what will be next steps?

I’m already looking to buy a property near to me for him btw

I would contact the GP's surgery and say you wonder if your DF may have Parkinson's Disease and list the symptoms. You can ask your DF to give your GP permission to discuss his health & welfare with you (my DM wrote and signed a note at the surgery) but even if they can't discuss with you, there's no reason a GP would ignore you.

FWIW my DM was diagnosed quickly (within 6 weeks, in lockdown) via the GP who referred on to the neuro unit at the hospital. Her key symptoms were: tremor, stiffness and weakness in limbs, voice distortion, handwriting distortion, bladder weakness, loss of sleep, anxiety and memory problems.

Thank you for your response. I think I need to contact surgery, I didn’t think that I was allowed to. My DF is of the type that they don’t want to bother anyone and could easily get brushed off.

How is your DM?

My DM is frail Doubledoors but she's 90 so Parkinson's has a proportionately bigger impact. She can walk, with aids, but not too far and is eating well. She has the slowly developing dementia associated with PD. She's now living in a care home and she seems happier with being taken care of there than with the increasing struggle to maintain 'independence' at home.

I'd be pro-active if your DF doesn't like to make a fuss. I found the Parkinson's team at the hospital very helpful -age makes a difference, symptoms develop faster the older you are so if you're right you'd like him to start getting help sooner rather than later. My DM isn't on L-dopa because of her age - the benefit is v debatable for her but she's had other help and treatments.

I hope your DF gets help via the GP soon.

Gosh, thats interesting about the smell. I didn't know that symptom, but actually, my dad has also changed smell.

My dad is 70 has loss of arm swing on one side, sleep disturbance, gait disturbance, hoarseness and psoriasis. He's waiting on a referral for his balance because he's had a few falls in the last year and I asked him to see his GP - she accepted an email from me with my list of prodromal PD symptoms I'd noticed he has.

He has no idea I think he needs to have PD ruled out. If I'm right then his life is going to be turned upside down. I honestly hope he has to wait a while to be seen because he's genuinely happy in his retirement and if he gets a diagnosis of PD he's not going to get his head round that quickly.

Yes my DM has lost her sense of smell, or at least it is very poor - that was one of the earliest symptoms, looking back. She's also increasingly deaf, again associated with Parkinson's (but also of course with old age generally).

My DF has a GP telephone appointment, the next available, non emergency one and it’s a telephone consultation is a month away!! My DF specifically said that it’s due to mobility problems and problems walking. It’s booked in but I’m hoping it turns into a F2F very soon after call, in the interim I’m going to write to the GP.

My DF lost total sense of smell 15 years ago. I’ve had him to stay and in six weeks since last visit there has been a big decline.

I hope they listen and take your fathers symptoms seriously. It took my DM 2 years to get a diagnosis. Although she managed to mask symptoms fairly well to everybody she was aware of them herself (her mother had had Parkinson’s) and repeated went to the doctor. The first consultant the GP referred her to said she was just attention seeking because her partner was disabled. The reality was she was hoping for early medication to slow her decline so she could carry on caring for him. Finally she saw a female consultant who actually listened to her but those 2 extra years on medication might have made a big difference.

We asked my mum's GP to refer her to a private Parkinson's specialist for assessment when we learnt that the waiting list for the NHS scans that the GP recommended were almost a year long. My mum saw a specialist within 4 weeks, was diagnosed within 15 minutes and paid around £150 for the consultation. We are glad we took this route as she was able to start medication very quickly after that and the results have been life-changing for her in a positive way. She has since been passed back to NHS care and is doing well. I'd definitely recommend seeing a private specialist for a fast track route to diagnosis.

You can ring the GP’s and share you concerns with them. They wouldn’t be able to tell you anything but they can listen to you. It’s perfectly acceptable for you to say I think he may have Parkinson and he has the following symptoms.

Just coming on to say that my FIL is going down the private neurologist route ATM as he was struggling to get anywhere via the GP (just got a 'watch and wait' response). It looks like he's going to get a diagnosis of Lewy body dementia rather than Parkinsons (which is what he was originally expecting), as the cognitive symptoms are more pronounced than the physical (although he's got both). But just to say, looking back now, that he's had issues with sleep disturbance and sense of smell for years and years now, which were probably the early signs if we'd known it then.