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123

I am pleased to have found this forum.

I have caught the news and press articles on Joy Milne (The lady with the heightened sense of smell who detected her husband’s condition before diagnosis) but, coming from a scientific background passed them by as interesting and hopeful medical research developments.

However… my wife and I for various reasons lead practically separate existences, but have just spent three weeks together on a business trip, and on several occasions I have smelt an unusual and unpleasant smell which I would be more than 99% certain was emanating from her: Joy Milne describes asking her husband if he had showered or if he had cleaned his teeth… That describes what I have experienced exactly, although for various reasons it wasn’t prudent to raise this with her during our trip.
I know she was showering at least every morning and a previous halitosis problem had been cleared up, and it wasn’t that.
The smell was not persistent… but the intermittent ‘wafts’, usually while we were driving, were enough to make me feel quite nauseous on occasions - again, Joy Milne describes it as being intermittent.

As with Joy Milne, I find the perfume counters in department stores and duty frees terrible places to be, and the similarities to what she describes and the case of my wife are too similar to be unlikely to be co-incidence.

Obviously our first step is to persuade my wife to get checked out by her GP - but is there any one/ any research body who might be interested in following this to see how it develops?

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Hi Billy,
Welcome to our forum community. You are of course correct in the assumption that your wife should see her GP as soon as possible, and her Parkinson’s team should be informed of any changes immediately. As for research organizations, your best bet would be to contact our free and confidential helpline, at 0808 800 0303. You can also have a look at this article on our website, which might have some helpful information.
Our best wishes and a warm welcome to you and your wife,
Jason
Forum Moderator

125

Hi All
My name is David 59 years old and new to the forum.I recently took part in the new Parkinsons UK tv advert which was broadcast recently on ITV. I would like to pass on my sincerest thanks to the team who visited my home to interview and film.
Thank you

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Hi David
I saw that advert and hope it achieves everything it set out to do
Well done
Tommy

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127

Hello, I’m Mariana (48F) and my mum (79) was diagnosed with PD about 20 years ago. She has undiagnosed mental illness (I spent most of young adulthood in minimum contact, and myself later developed mental illness that I was successfully treated for) and she was cared for by my dad. Then in 2020 COVID hit, dad caught it and died. I’m now long-distance caring for my mum, as no one else can do the job - she has another daughter who is a young widow and lives 10+ hours flight away.

I don’t know what stage of PD she’s at, she’s had her second ever neurologist appointment today, and is on Requip (old prescription) and today had Sinemet added. I’m able to be with her this week as I’m on my second annual visit (3 hour flight away).

Mum was a difficult person before diagnosis, she’s functionally illiterate (e.g. first bank account after dad died) and lives in a different country. Personality wise she hasn’t changed much imo, but people think it’s the disease, and it’s just her not-so-winning personality.

I plan to read a lot of the comments here, and try not to explode as often as I do when I visit mum. The last two years of my life have been hell - dealing with dad’s probate remotely, and trying to get to the bottom of a seemingly endless list of tasks. My husband found this site - he’s fed up of listening to me complain about the unfairness of it all, and hopes I can get some help.

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Hello Inannani
I’ve just read your post and wanted you to know that but it’s a lot to take in so I will get back to you when I’ve given it some thought. Hopefully others will chip in quicker than I can but you have found a source of non judgemental support here, that much i can tell absolutely.
I will come back to you.
Tot

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129

Hello Inannani
Apologies for being slow to get back to you and I will be honest and say I am not sure what I can do to help. I started writing a reply several times but found myself hesitating. I always try to be honest when replying to posts and make it crystal clear that it is only my view based on often limited information which demands a certain amount of reading between the lines so may or may not be accurate. On occasion a post is written that makes me wonder if I am the right person to reply - yours is such a post. It is to me on the one hand glaringly simple and on the other hugely complex but the dilemma is how can I write something that may cause distress which I would not ever wish to do, by trying to be honest. I have decided to plough on but would ask you to bear this in mind when reading it. For clarity I will write in point form

1 Your relationship with your mother has never been easy for a number of reasons and you’ve had periods of limited contact
2 it’s likely your father acted a something of a buffer in your relationship with your mother that prevented total breakdown.
3, With your fathers death that buffer is gone.
4. Ordinarily that may have resulted in your having limited contact with your mother. As it is you’ve been thrown into quite an intense albeit ‘remote’ caring role by dint of her Parkinson’s, mental health and what you call her 'functional illiteracy."
5.Your sister is too far away to help and your husband is fed up
6 Your emotions are over the place, guilt and resentment may figure quite highly.
7. You feel alone and are wondering if this is your life now because you can’t see a way for it to be different

There are a couple of things that came to mind as I was thinking about your situation.
You call yourself a remote carer and say you live a three hour flight away so your mother must manage her own physical needs either on her own or with local carers for much of the time. It may help to list exactly what you do for your mother on a day to day basis and see if you can organise it into for eg a phone call at an agreed time 1 or 2 times per week at an agreed time and keep back things that can wait until you see her.
I do not understand how she has had her Parkinson’s so long and has had only 2 neurology appointments. It would be most unusual. Does she regularly see a GP for example? Does her Parkinson’s after so long not give her difficulties.It seems to me, if this is so, that she needs some kind of proper review, this just doesn’t make sense to me. although I appreciate you’ve not given much detail.
I suspect your own feelings about the whole situation are a great deal of the problem. She is your mother and however difficult you feel you have to be there for her but if your father were still alive you might well only have the minimal contact you had as a young adult. This may cause difficult feelings for you around his death and affected your grieving process. My feeling is you need some form of counselling to help understand these feelings and your relationship with your mother to stabilise a situation that currently feels like it is built on shifting sands.

You won’t believe this but I actually think you must be quite a remarkable person given everything you have had happen in your life to still be able to be there for your mother. You are doing the best you can and that is all you can do and I respect that. However I also think my last point is the crux of the problem and unless you address these sorts of issues you will not, in simple terms,be able to get your life back.

There you have it. My thoughts on your post. I hope it has not caused upset although it was probably a hard read and I hope not wildly inaccurate and that at least a few things resonate with you and perhaps allow you to see a way forward. I really do hope so.
Tot

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Thank you for a long and thoughtful response - it is appreciated! After two years of constant long-distance care, I’ve put in some boundaries (e.g. mute her on all channels so she doesn’t constantly interrupt, limit video calls to once per week, no discussion of this topic with my husband to preserve our peace). But she is very needy, increasingly forgetful, and I have to fight daily not to pick up the phone on every “emergency” - her welfare is on my mind 24/7. I have access to her email, so I can monitor her official communications and I help her pay bills, shop online etc. I enable her a lot, as she would not be able to live this independently without daily input from me.

She and dad always travelled a lot, and despite living where she is now 20 years, they never fully engaged with the local system. Their dentist, for example, is in a third country. They didn’t have a local GP - frankly, I suspect dad was hoping she’d die before he did, so he could have some years of peaceful retirement, hence the lack of any form of plan (example: not planning was their thing though - when they retired, they moved into my small flat with me and my bf at the time, and after a few weeks of this, bf kicked them out and told them to go find a place to stay).

I can’t afford therapy, perhaps when she dies (if she doesn’t outlive me), I’ll use any inheritance to get therapy.

At what point do I, as a carer, take over and relocate her? The country she’s in doesn’t have Lasting Powers of Attorney (I’ve asked and asked solicitors - “we don’t do that here”). I could do it now, but the fighting will be intense (and it will cost me a fortune just to initiate the process, assuming I can even do it, Brexit doesn’t make things easy).

Edit: my resources are limited - mental illness interrupted my career progression, and until 2 years ago I’d settled on a small, quiet life. Flying to see her regularly, and foregoing income for weeks at a time is cutting into our own retirement plans. I am organised and frugal, but those are my only assets.

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Hello Inannani
Thank you for telling me a little more of your circumstances. I was pleased to hear you have put some boundaries in place but can completely understand it is not easy to ignore any 'emergency. ’
I can also better understand now what you mean by remote caring and quite clearly you can and do keep the wheels turning for your mother but you are paying a high price yourself. It is important that you keep an eye on your own mental. and physical health because you won’t be able to continue what you are doing if you get ill, if that is what you want to do. Am I right in assuming you are in this country, if so I believe you can access counselling on the NHS via your GP.
I think it may be worth making a call to the help desk who have a lot of resources at their disposal and who may be able to offer some constructive ideas that may help you to move forward.
I don’t think I can add anything further to what I’ve already written, which I was glad to see you took in the spirit it was intended. However the forum is also a safe place to let off steam and if you feel the pressure rising think about using it in that way.
Do let us know how you are getting on.
Best wishes
Tot

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132

Thank you for the GP recommendation - I’m loath to start on that as it feels like it’s opening a whole new process (my own mental health), and I want to be closing processes now, not opening them.

I’ve asked mum to come here before - she even spent a week here last year. But she hated it, we spent the entire time arguing, and when others ask her in front of me, she says she prefers to visit my sister, “because she has more friends and her life is more fun”. Except my sister isn’t interested in caring for her, she has enough on her plate.

I am going to spend a week recovering from this visit (husband says I spent all night snoring, which I only do when I’m sleep deprived - I probably got 16 hours’ sleep over 8 days), then hopefully I will feel better, think more clearly, and I can reconsider our options.

Atm, I see three options:

  1. Begin the immigration process to move her to the UK (I’ve spoken to a solicitor, she will charge £1k+ upfront, no guarantees of success). IF it works, this would be the solution I’d be more comfortable with - it would save me the annual visits, and I’d have her near so could visit daily/weekly. And if she’s here, I may be able to get LPAs in place so I can properly look after her. This would be the option Mum wants the least, as she hates living here and my working class/introvert lifestyle.
  2. Bully my sister into taking her in for 3 months (over the European winter). I’d have to book her the journey, assistance, care for her house cat, and then she’d be out of my hands for a short time, until her Sinemet 25/100 review is up. It is a VERY long journey that includes a 10+ hour flight, and a plane swap. This would move the burden of care unto my sister - she last had it when both parents were stuck unable to travel back home during the first COVID lockdown (when dad caught it). Mum would like this most as she’d be near her grandchildren, middle class lifestyle and all the parties she wants.
  3. Do nothing. Let her be looked after as she has by her friends, until she eventually falls or injures herself and ends up in hospital. Which I anticipate will cause me to have to quit my job, move there, and then ???.. This is the worst option for all involved, but it’s the one currently happening.

I wish there was a questionnaire you could fill in, detail all your situation, and then it produces a step-by-step plan for how to proceed.

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If only it were that simple wouldn’t it be wonderful - a questionnaire that would tell you what you should do and you could follow it knowing it was right. Sadly that’s not how it is.
I think you are right, the first thing to do is get some rest then you can review. Your options are all difficult but if I might add one that I believe is the most significant and that is to put you and your health first. I do understand what you said about not wanting to open processes and I am only too well aware that your own mental health is a hugely sensitive area to deal with. I do think however that unless you address some of the issues that are bound up with your family experiences you will always struggle to balance the conflict that is clearly there and lurch from pillar to post to try and keep things going. If you better understood that and your reaction to it you will hopefully be in a stronger position overall. It won’t be easy and it’s not a quick and it is your decision, but I do think it is worth serious thought.

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Hi, I was diagnosed with Parkinson’s in 2016 I am now retired and live at home with my wife.
I see my consultant every six months and he has gradually increased my medication (mainly sinamet )
to control my symptons over the years. These days my main problem is getting a good night’s sleep.

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Hi Speedi,
We just wanted to pop in and say hello and welcome you to our forum community. Please have a look around at your leisure. Among the shared experiences and communal support you’ll find poetry, humor, music, and loads of other evidence that Parkinson’s doesn’t stop a life well-lived. Also be aware of our free and confidential helpline, on 0808 800 0303, as well as a wealth of resources and info on our website at Parkinsons.org.uk.
Best wishes to you and your wife, and a warm welcome from the PUK team.
Jason
Forum Moderator

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Hello. I am new to this group and hoping to find out more about Parkinson’s.
I have been experiencing symptoms for a couple of years but hadn’t considered Parkinson’s until recently. I had treatment for breast cancer in 2019 which included chemo, surgery and radiotherapy so I assumed that my problems were ongoing issues surrounding that. However, my GP said that he was concerned that things weren’t improving so referred me to a neurologist. Fast forward a few months and the neurologist assessed me and sent me for a DATscan. I got my results last week and it has been described as ‘abnormal’ and I have been referred to a Parkinson’s consultant. The wording on my report is, ‘on the left side there is slightly reduced tracer uptake in the striatum’.
What I don’t know is how significant the word ‘slightly’ is. Is it possible that this could be normal or should I be mentally preparing myself for a diagnosis?
I’m seeing the consultant in a couple of weeks so not long to wait but it’s all that I can think about. Any advice would be welcome.
Thank you so much.
Julie

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Update: Based on your comment I made an appointment and got to see my GP today - I’ve been referred to a call with a therapist to assess my needs (due before Christmas). Thank you so much for reminding me this is an option!

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That is good news if that is the right thing to call it, since it won’t be easy for you but i think it’s worth trying. Good luck with the assessment hopefully they willl be able to offer something you feel comfortable with. Let me know how you get on. Private message me if you prefer not to post openly, it’s a very sensitive and difficult area after all but don’t feel obliged what you choose to divulge and how is entirely up to you

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So happy you have found that oil but can I know what’s RSO oil and how I can get it
Many thanks
Vian

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After one cancellation, I got the phone call from my GP re: mental health referral. 11 minutes of useless advice (“do you exercise? can your mum not get a new phone?”), I get told they’ll send me a link to IAPT self-referral. So that was a massive waste of time.

To anyone else caring for someone with PD in the UK, who is considering getting psychological help on the NHS, just search online for “IAPT self referral” and the name of your council, and go straight through there. Will save you a few months!

I’ve filled in the form and sent it off, now to wait another 2-3 weeks for their return call.

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That is very useful information, I obviously wasn’t aware of that when I posted my reply. I hope you now don’t have to wait too long to get the help you need.
Tot

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Hi All,
My name’s Dave and I’m the son and carer for my Mother, Brenda (85yo), who has Parkinson’s. She was diagnosed a few years back now and my Dad was her main carer but he has recently been diagnosed with MND so that has had to change.

I’m here to hopefully find out how best I can support them both.

Dave
From Sheffield