Parkinson's Newly diagnosed Mum

[Flensburg]

My 80 year old mum was finally diagnosed with Parkinson's this week. My sister and I have suspected it for the past year but mum refused to have anything to do with the idea.
The doctor seems to have done nothing other than offer to refer her to a Parkinson's nurse which my mum said she would think about. My mum says she asked the doctor if there were any treatment available and the doctor allegedly said there were medications but they take months to get right, and there is no point referring her to a specialist as they will only offer the same medications. Obviously this is only my mum's interpretation of the conversation, but she did leave with no information or resources, no treatment plan and no follow-up appointment.
Surely this is not okay? I have ordered information leaflets from Parkinson's UK and found her the details of a private neurologist in case she chooses to go down that route.
My mum is very much the sort to deal with things on her own and very anti support groups/talking about things. She is very likely autistic like my siblings and I. But I am the only one left in the country and in contact with her. I visit her on the bus but its an hour and a half journey. I can't drive because of visual processing issues. I want so much to help her but she can be difficult to help. Maybe it's I who need the help.
When they first considered parkinsons at the beginning of this year (some doctor without meeting her told her over the phone that she didnt have it hence delay) she bought a load of tablets with the intention of taking her own life if that were the diagnosis. For now she is half in denial and half being positive and asking me eg to find her exercises online for foot drop. But she said she will never go in a wheelchair. I don't blame her for wanting to end it before end stage Parkinson's but I fear it could go wrong and she could just harm herself irrevocably and still be alive but suffering.
It's all very painful.

That's so sad. I wonder if you can write to her Dr to say what your Mum said as it doesn't seem likely or is it ageism?

I have Parkinson’s at 61, told had it 6 yrs, medication can help, nurse is great too.
excercise slows its progression, it varies to each person, the nurse will advise what is available in terms of groups and support

@Mosaic123 thank you. Would the doctor tell her I had written as my mum would be furious if she found out?
@Nsky62 thank you.
I hope you dont mind answering my questions, please ignore if you do. Has the medication had horrendous side effects as that is what she is afraid of?
With regards to exercise she can barely walk and uses a stick within the house so I'm not sure what she could do? Is this all stuff the nurse would help with?
Do you have a consultant?

Flensburg
Ask away, I have a consultant , see him not very often, my meds zero side affects, I take Co careldopa 25mg, 3x daily, stops hand tremors.
Just started aquafit ( nasty fall in June), fun,hard at times.
Maybe chair excercises?

Sorry to hear. My dad has it too and my friends dad too. Their drs prescribe the lowest possible dosage of the medication ( there’s a few types available) as a lot of them lose efficacy or cause side effects with prolonged use. So they prescribe the lowest dosage possible to treat symptoms and hopefully prolong the treatment timespan..
as pp said, exercise is important , if she can’t get access to a physio then have a look online at Parkinson’s foundation exercise videos. They are a great free resource, 20-30 min each, doable at home , gentle and with using things in your house …

The Parkinson's nurse should be a great source of knowledge and support to you and your mum and can often prescribe and review medications. In terms of physio PD warrior can be good, but other more specific exercises can help, especially the forward reading ones. If transfers are getting difficult ie getting in and out of bed, on and off chairs / toilet and Occupational therapist would be useful. Often people with Parkinson's find a 3 or 4 wheeled walker helpwith fluidity of movement, but again speak with a physiotherapist. The Parkinson's nurse should be able to help signpost you to all of these people.

I could have written your post about 12 years ago. It was upsetting and frustrating to see mum getting worse and worse whilst in complete denial. Eventually I got the GP to refer her to a neurologist and it was life-changing. Within 3 weeks of starting medication (madopar), mum was out of her wheelchair, able to cook and potter about her house, able to do physio.
Parkinsons is very variable but it's by no means always as horrifying as quickly as people fear.
I battled for about 3 years to get her to the stage of medication, and the stress of fighting her ('I'm fine') and the GP ('she says she's fine') was terrible BUT it gave her at least 3 or 4 more years of far better quality life than she would have had.
So if you can, do everything possible to get her to a neurologist. Beg, cajole... Anything!! If you can afford it, consider going private for speed and for convenience of appointments.
Best of luck

@kisskiss thanks I will look at those videos. But my mum doesnt have access to the Internet.
@Hairyfairy01 thank you that's useful. So the Parkinson's nurse is definitely the way forward.
@SeriouslyAgain it's so hard, isn't it? That's amazing re the mandopar. There are no neurologists in our county and about a three year waiting list (i know as i am on it)but I think she can afford to go private. I do think GPs should refer to neurologist automatically though.
A step forward today is that mum's friend knows someone else with Parkinson's and my mum is going to talk to her about it. So the denial is lessening. I originally told my mum about three years ago I was concerned she may have it because of the repetitive movements she makes. But she denies she makes them.

My Mum died from end stage PD 3 weeks ago.

She was diagnosed about 7/8yrs ago in her mid seventies but was a rather 'head in sand' type & didn't want to read up on the condition. Covid didn't help matters either, as my StepFather was neurotic about contracting it, so she didn't get out and about much as she needed his help to do so.

She was given exercises (which she never did) & from what I can glean, exercise is key to keeping their mobility. She was on medication, which seemed to work quite well.

I'm not going to lie, the last 2 years were very hard, watching her decline & knowing there was nothing we could do about it. It was horrific & traumatising for us to observe, yet she seemed quite stoic and rarely complained.

I have already told my nearest & dearest that if I get it I will be taking matters into my own hands, sooner rather than later.

My 85yo MIL has recently been diagnosed.
She was becoming absent and withdrawing from social contact. Her consultant put her on medication and a few weeks later she's like a different person.. more aware, alert and engaged in life.

I don't know the name of the medication and am away so can't ask but yes she absolutely needs to see a consultant!

The report of what the doctor said sounds wrong. If there is ANY way to get her agreement to see the PD nurse with her, or to allow you to talk to the PD nurse too, do try for that.

Dp's mum has had PD for over ten years, and has only started meds a couple of years ago. There are frustrations, but in general the meds are very good.

@Horsemad I'm so very sorry for your loss and the trauma you've been through 💐
@Ibizafun thanks for sharing. Was there a long wait to see the consultant?
@PermanentTemporary she is going to try to find out if the nurse is one she's met at the surgery whom she didn't like or someone else. Fingers crossed it's someone not attached to the surgery. At this stage I don't think she'd allow me to talk to the nurse.

@Flensburg typically in the UK the clinical specialist neurology nurses are attached to the hospital neurologists clinic and are very high-level in their skill and knowledge. Can you say which country your mum is in?

If there is a 3 yr waiting list on NHS, I would really urge finding the funds to go private and travelling out of county if at all possible. The thing is that you only really need the first consultation because the meds can be prescribed and after that, you're 'in the system' and can then have a base from which to go back to the NHS for 'shared care' and to get the next prescription.
It's horribly expensive. I seem to remember it was about £200 for a consultation where he literally looked at my mum, got her to stand up, and wiggled her shoulders... and that was it - diagnosed in a minute, bit of a pep talk, prescription handed over! But it was worth every penny! Genuinely gave her an extra 3 or 4 years of independence (obviously I realise that she was also lucky and that some people have it a lot worse, but I really think the effort and expense now is at least worth a go). Wishing you luck.

@PermanentTemporary Wales.

@SeriouslyAgain wow definitely sounds worth it.

I'm a bit confused. Was it a GP that diagnosed Parkinson's? If so I'm not sure they can do that. I think I'm right in saying they refer to the movement disorder clinic if they suspect it and that is where they will receive their diagnosis, this is normally led by a neurologist. Has her go referred to the movement disorder clinic do you know? Is your mum in north wales by any chance?

Thank you @Flensburg

Is your Mum in Nth Wales? Mine was and I'd recommend getting a consultant appt at Chester if you can as their PD people seemed far more proactive when my Mum was admitted to hospital there.

I wish your Mum well.

The nursing service will be something like this (obviously i don't know your Mum's nearest service).

@Hairyfairy01 and @Horsemad no, West Wales. Yes, the GP diagnosed her and hasn't referred her on anywhere at all.
@PermanentTemporary great, thanks.

I recently lost my mum, she was diagnosed 12 years ago age 79. She had shakes in her left hand which she found annoying. The Parkinson's nurse was brilliant, mum did not want to take meds, then took more than should, got nasty side effects and went back to not taking. She wouldn't do her exercises or follow nutrition advice. Even so she had 12 years and passed peacefully in her sleep age 91 It progressed very slowly.
She had good weeks, zoomed round unaided, housework, laundry, phone calls, up and down stairs, bossing my dad around but she did have sad times, lack of dopamine made her depressed but she wouldn't take antidepressants. She wasn't any less able than many other ladies her age, like them she became more frail, weaker, got tired. She had hospital admissions usually for low potassium. My mum was more fed up about getting older than she was about the Parkinson's. The stuff we read scared us as a family but most of it didn't happen to my mum.

@binkie163 I'm very sorry for your loss. 💐
Thanks so much for taking the time to share such a positive and reassuring experience.

I would definitely query with the gp about referring on to movement disorder clinic / neurologist for full diagnosis. In the meantime try and encourage your mum to make contact with the Parkinson's nurse, I doubt it is the same one attached to her surgery, they usually cover a huge area, even more so in West Wales I should think.

My nurse is not attached to docs, mine works with consultant, most of you who had relatives with it, older than me🙁
The nurse contacted me, it took a few weeks tho! After seeing consultant
i saw my consultation in 7 weeks, being my gp helped too.
My last appointment was 12 minutes, not due again till spring next year

Flensburg she did go privately.