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.

Yes I will encourage her to see the nurse.
@Nsky62 that doesn't sound long enough or frequent enough...how do you feel about it? Is it because you are doing well that your appointment isn't till next Spring?
I hope this thread isn't horrible for you to read. One thing I'm taking from it is how very individual the progression of the disease is. I feel less frightened than I did.

Because I’m doing well, hurt my right knee, not related tho

You're right @Flensburg the progression IS very individual.

My Mum's consultant told her he had patients who've had it over 20 years & there hadn't been much change for some of them.

My Grandad (Mum's Dad) also had it. I'm not sure how old he was when diagnosed but fairly young - in his late fifties, very early sixties & I remember his tremor was awful - far worse than Mum's ever was.
I don't know if he even received medication back then. He died of a cardiac arrest, so not really anything to do with the PD. It was very different to how my Mum was with it.

I forgot to add, my Mum's appointments were always yearly too.

Maybe they need to have a long gap between appointments in order to see any changes?

Swansea has a dedicated parkinsons centre, it has been there a while so worth going back to GP for a referral. Definitely have access to neurology in West Wales as DFIL has seen them but I agree might be a long wait. What the GP has said does not sound that great and i agree with others she should get a referral.

I’ve worked with two people with Parkinson’s. One was diagnosed in his 20s and finally took medical retirement at about 50. The other was about 50 when I met him and took normal retirement at 60. So a lot of variation.

Thank you all. You've given me a lot of useful information, and also hope.
I don't think she is well enough to travel to Swansea as it is a two hour drive away. But they may well run a clinic nearer to her.

My mother died of Parkinson's, or with Parkinson's as they like to say, six years ago. She was diagnosed at 69, lived til 84. My point sort of is, you are 'lucky' in your parent being relatively old in getting it, though I know nothing feels lucky about any of this. The rate of progression is highly variable, there's no rhyme or reason. When she was in a nursing home, not very talkative at all but aware anyway and in a wheelchair, I had a chat with an old boy resident who then said he was off to take his Parkinson's medication, he'd had it the same amount of time as her, there was no comparison. I think a lot depends on whether the agonist - the drug that makes the Parkinson's medication more effective - works effectively.

Some agonists can drive a person crazy as hell, hallucinations and genuinely believing the house has been broken into or an intruder is setting over there. Reckless gambling is another side effect.

We went on a journey with it, you can say. But I live in Surrey. The glacial Parkinson's nurse was generally pretty awful, honestly I thought you'd be just as well off going on the Parkinson's UK website and checking out the forums, to see what medication works and so on. It's not like there are any secrets.

Ultimately my 'journey' with Mum which led us to seven Surrey care homes meant I no longer trust any State operatives or organisations any more. Not the Parkinson's nurse, the regulators, Social Services, my local MP Chris Grayling, any of them. It wasn't the Parkinson's that killed Mum, it was State agencies - and they spent years trying to do it. But to be clear, some years after she was diagnosed, we did get her out to Paris on the Eurostar twice (when she was still living at home), it really wasn't all bad. Initially it was the drugs that messed her about and she had to settle into them. Zelepar at first I think (very light) then Madopar then the agonist Mirapexin which she had to drop as it drove her nuts.

FFS get Lasting Power of Attorney in Health and Welfare while you still can - your mother has to be in a sound mental state to do it, it cannot be got retrospectively. If she does not grant you that, you will not be the decision maker for her care once she has got past a certain point. The State will be in charge, and things can get very nasty indeed. They did with us - we had it in Finance but for some reason not in Health and Welfare.

Yes, seconding what NewspaperTaxis says about PoA - we didn't have it & I was in the process of having to obtain Deputyship to handle her affairs (an expensive & convoluted process), when my Mum died.

To be fair, it didn't impact us from a Health & Welfare point, the hospital & SW included us in all decision making but from a finances point it was VERY stressful. The LA ended up paying her nursing home fees & we have to repay them from the Estate.

I know Swansea is a distance but in West Wales so many of these types of services are heading there. If she is in the Hwyel Dda health board which covers most of west wales, then they do have Parkinson nurses and in the past all people diagnosed have been given a box full on information. Not sure if they do these any more but worth checking with her GP. This info might actually be useful for you.

I do think my mum's generation assume that medical care is still the paternalistic, doctor knows best, easy way out type of care that was common when they were younger adults. I think they assume that it would be a burden on their children to have any explicit health and welfare responsibility.

I could never get my mum to understand that these days, medical care is based on the patient allegedly calling the shots, with fluctuating support for any communication problems the patient has in actually communicating these decisions; with a consultant of variable attitude sometimes available to make the decisions if the patient can't: also that the consultant will change every week, and previously hard-fought decisions will apparently melt away as if they had never been made with a change of consultant.

The struggle my sister and I have had to try and get what we consider obvious decisions to be made in our parents' best interests, based on our intimate knowledge of their wishes, has been endless, because they would not give us POA for health. We as a family are very much on the absolutist/nihilist end of the spectrum when it comes to quality of life, in that our parents both had very high expectations of their lives, and once certain things became impossible, they assumed they would no longer be treated except with pain relief and a large glass of red wine. I know that not everybody is like us, and that's fine. But how I wish for all our sakes that they would have listened to us and realised that having a POA, though stressful, is much less stressful than watching helplessly as your parents receive utterly futile and frankly confused medical care.

Update: the doctor appears to have referred her (without telling her) to a "geriatric movement disorders" clinic an hour away from her, as she has received a letter in the post with an appointment for January there. This is obviously positive news.
Re POA I will ask her.
So sorry to those of you who have had terrible experiences. I have great trouble navigating the medical system for my own needs so i understand. I have support workers to help me access it.
Yes she's Hywel Dda. She just needs to agree to see the Parkinson's nurse.

I hope it goes well, my mum remained able to slowly [often not slow enough] get around until the last 2 years but no worse than any other lady her age. My mum said there are far worse things people her age can get and more disabling. She was a bugger for not engaging with her meds, exercise, nutrition but it's debatable how much improvement that would have made. I think as soon as Parkinson's is mentioned we all panic, I know I did.

To add a bit of perspective... as stated, my mother had Parksinson's about 15 years, it would have been far less time had Surrey County Council managed to do its worse (she nearly died in a care home, her neglect though mentioned by the CQC in its visit at some length was ignored by Surrey's so-called Safeguarding heads). Part of the reason my Dad couldn't keep his usual eye on her was he'd written off the car on the way back from seeing her. This was in early 2014.

Now, my mother died in autumn 2017, aged 83. My Dad died a month or so ago, aged 94. So he went from in 2014 being able to drive around, do the local shop, cycle a good few miles a day (he'd cycle to the care home for a month or so) to death within less than a decade. He had a whiff of dementia worsening gradually, he never drove again after the crash, he had a fall after the first lockdown, mildly broke a hip bone (it was weight bearing) but - and I curse this - he never really walked again, I should have got him on a sedentary exercise bike and I recommend this for your parent. My point is, Dad did not have Parkinson's. But whatever he had, it got him in a shorter time than Mum's Parkinson's. It became in the end a succession of different things - urinary tract infections, low sodium levels, some kind of epileptic 'crash' that was very odd and increasingly frequent which could only be treated with a sedative that is not a good thing to give an elderly person, constipation, dry skin that led to awful itching and so on. Had be been in a care home instead of cared by us at home, he'd have gone a few years earlier, Covid or no Covid.

So, at the OP's mother's age - something is going to get them. It may take a decade. Or, if there's nothing wrong, it can happen next week. There is a list of famous people - Christopher Plummer, Des O'Conner, Nicholas Parsons, Bobby Moore (albeit he had dementia and was in a care home), Barry Humphries and possibly even Queen Elizabeth, who were at the races and some even full-time working and in their 90s who had a fall and that was it, it was curtains for them. Others will be in a car crash - Bond 'Q' actor Desmond Llewlynn was one fatality, Prince Philip might have been another, so might my Dad all those years ago but no one was hurt.

I'd advise the OP has their parent undergo a bone scan and take Adcal D3 or whatever they advise these days because a fall is obviously more likely to lead to a break if they have low bone density. Look out to get soft furnishings etc avoid hard edges.

And print out the forms for LPA in Health and Welfare from the Govt website to be ready; the signatures need to be witnessed by someone who's known them for a good many years and done in a particular order, it costs around £80, I don't know if Finance costs extra or not, probably.

I attach a couple of letters printed in Metro newspaper this year, the first is from me, but another replies to it saying if you have siblings make sure they're included too though you will know if this might be an issue for your family.