•sensitive• Does anyone have Parkinson’s?

[ninjahamster]

And can you tell me your early symptoms please?

Glad you find them a little helpful. Said relative was only wearing theirs sometimes but now wearing it all of the time on the advice of their Parkinson’s Nurse and that is when they’ve appeared to have a reduction in their symptoms

Diagnosed at 48 after 4 x visits to GP. Lost sense of smell years ago, frozen shoulder, tiny tremor in one hand, lack of facial expression, lack of arm swing on one side whilst walking early symptoms. Still working full time at 55. AMA

Moving during dreams happened about 8 years before diagnosis. Kicking out or hitting out while asleep.

Anosmia

lack of facial expression (according to family) and change in voice.

no tremor.

My dad's smell changed. Sounds daft but he didn't smell like my dad.
His voice became very weak.
His left foot drooped.
People with Parkinsons develop 'Parkinsons face'. A sort of flatness of expression. Once you know what it is you see it on people in the street. Not a sad or depressed face but a 'flat' face

My late wife was diagnosed in 2015 - her first symptom was a tremor in one hand, to the extent that she would sometimes have to hold it down with the other hand if she was in a meeting for instance and she didn’t want others to notice it.

She was diagnosed by a neurologist who (among other things) had her walk up and down a corridor and observed what he described as ‘Parkinsonian gait’. From what I can remember, that seemed to involve a slight lurch to
one side, and irregularity to the extent of arm swing.

I should point out at this stage that her death was from cancer, unconnected to the Parkinson’s, which was pretty well managed by medication.

It could be Parkinson's or it could be something else, hopefully something far less serious and, of course, worrying can make the symptoms seem far worse. Most of us here are not doctors and even the doctors on here could not diagnose you without seeing you. You need to see a doctor as soon as possible because if it is Parkinson's, the sooner you start treatment, the better. This also applies to other illnesses of course. Please let us know how you get on. 💐

Not daft at all @AngelinaFibreswhen you see that the change is smell is being used to help develop a diagnostic tool

https://www.kch.nhs.uk/news/parkinsons-disease-patient-plays-clarinet-during-brain-operation/ I was reading about deep brain stimulation a few days ago; I know DBS has been an option for a few years.

Lots of these could be menopause or something else.

how old are you?

one thing I don’t think yet mentioned- with my dad is smaller handwriting. Also a ‘mask’ like face - less expressions.

the gait is a clear indication though - shuffling.

i would think you might have meno and maybe some other things going on but I wouldn’t jump to Parkinson’s

Yes - the person has a particular smell (not their sense of smell- the smell coming off them). It’s now being researched after the wife of a Parkinson’s sufferer connected with a researcher- it’s fascinating.

my dad had the smell - coming strongly from the back of his neck. Not a nice smell either.

With my Mum we were out for lunch and she went to the loo and I saw a disturbance and staff came running, she hd tripped over a rug.
She got up with no issues and seemed fine and I was all ready to get angry about this "dangerous" rug when I realised it was pretty flat
We didn't realise at the time but my Mum wasn't lifting her feet.
She was diagnosed a few months later but led a pretty good life for the next 15 or so years and only really deteriorated for the last 5 months of her life (she) was 80 when she died)

My auntie has it. The first thing she was saying was she felt like she was going to fall over. Like her balance was off. Then movement became harder, and she could no longer manage stairs.

Last summer she could walk around unaided at the shopping centre, but not get in and out of a car unaided.

She is now in a care home. She can still talk and do some things and move around with a walking aid. But she doesn't remember much or seem to be able to make decisions or carry out tasks like phoning someone.

From the first symptoms to now, it's been about five/six years.

It depends a lot as some people have more extreme physical and mental symptoms. Or they deteriorate more rapidly.

My Mum's auntie also had it and she used to shake a lot and her voice went to a whisper. But she still could live at home until she passed away.

My friend was very expressionless.
That was one of the early outward signs.

With the older person, dementia can come with it too. So definitely lack of enjoying anything. We noticed obsession over some things and an inability to make decision. What to wear - so a huge suitcase for a weekend away. Judgement goes. As does conversation and expressions of joy. Not all Parkinson’s is tremors either. Friend didn’t have this until very recently. Stiffness was the big issue so stairs and steps are a huge issue. Think about living downstairs with a shower room to be safe. Early thinking about the future makes life much easier when the time arrives because going up the stairs to the loo is a nightmare. If you are a women, where are you going to go for a pee? Friend pees in a bottle! It’s gross.

I do agree with planning for when you’re less mobile. Even a shower with a small step into it, one ot two inches, can be a barrier for some older people.

I don’t have Parkinson’s but still fully plan on selling our home and moving yp somewhere more suitable when the last DC leaves.

We’ve enjoyed bringing up our family here and it’s suited us well but ot won’t suit us as we age.

A change in handwriting is often used as a test for Parkinsons . As is a loss of smell .

@BunnyRuddington it’s been a dreadful learning curve with our friend. Lots of excuses made for the way things were going! DH and me seemed to be the worried ones! As a result of belligerence and people accepting that this was “normal for X” diagnosis only happened, in our view, at least 7 years later than it should have done. So trip hazards everywhere (not in our house luckily) and friend doesn’t understand what you say either so doesn’t see hazards let alone alter behaviour. It’s totally overwhelming when it’s so complex and it’s full time care provided by friends wife. So the first indications of something wrong should be taken very seriously and not swept under the carpet.

Thank you 🙏

@OhDear111has your DF had a Care Needs Assessment?

An Occupational Therapy referral should help with the peeing in a bottle, they should be able to provide a commode.

If there are trip hazards, have the local Fire Service befn around to advise?

Sadly though, if someone is willing to do the care 365, 24/7, they’ll be left to get on with it and it’s usually a fall or an illness Thats necessitates a Hospital admission before any help comes.

@BunnyRuddington Thsnk you for your concern. I don’t actually know. I don’t know why they left it so long to seek treatment either. I’ve honestly never seen anything like it and DF partner is doing all the care. They’ve plenty of money to buy help but won’t spend it. I believe help here is means tested. (Was for DM). The elderly don’t just get it.

DF is 74 and has had a fall which necessitated an A&E visit but no stay, This meant DF couldn’t get to the bathroom upstairs at all so they used a shower in a bungalow of a friend of Dwife’s mother! Not sure they want a commode. I’d be surprised because they are in denial of nearly everything and have been for years.

Also DFs wife doing the care is crying about the situation a lot. Understandably. However conversations are very limited as a result. We don’t get why they haven’t moved or had a ground floor bathroom built. They have money and space to alter their house. They cannot agree on buying a bungalow and buying one of very few new ones means spending at least £300,000 over their house value plus they are in an isolated area.

However I’ll ask about OT. So far, DH has put in grab rails and they’ve got a wheelchair and a bath swing chair. However falls are very very likely - scares us!

Both my DF and DSis had Parkinson’s. I think the earliest sign with both of them was change in facial expression. Initially very subtle, but it was difficult to read their expression and it didn’t match their mood. I remember meeting up with my DF and as I walked towards him he appeared annoyed with me, it was like he had to force a smile and it was a smile without warmth.
My DSis was the same but her first symptom that she was aware of was a slight tremor. She was a podiatrist so it was probably more notable to her when she was working. I think because we rarely hand write anything nowadays it is probably not as noticeable as it would have been in the past.
Both my DF and DSis found they were struggling to write their signature and their handwriting became very small.
My DH had a stroke a few years ago which damaged the same part of the brain that Parkinson’s affects so he has some Parkinsonism features. He doesn’t have a tremor but his handwriting is poor ( it wasn’t that ledge-able before but it’s awful now). His facial expression is affected too but only when he’s tired. Unlike Parkinson’s he has improved considerably though.

Practically identical for me except dx at 45 and currently 54.

Hi OP 😎

I have a movement disorder of the opposite sort called tardive dyskinesia, which means I move too much and it causes involuntary movements.

Mine was actually caused by an adverse reaction to an off label antipsychotic prescribed for severe insomnia and anxiety after a head injury and post concussion syndrome.

I had some Parkinsonism (symptoms similar to Parkinson's) while on the antipsychotic, so I do understand what they are like. I also have a mild tremor in my hands, and so many other strange things like my tongue moving on its own sometimes 😳🤨

Absolutely feel free to PMe or ask anything about movement disorders. I've been Iiving with mine for a decade now so I feel quite experienced 😅

If you’re in the UK i would think about reporting them to Adult Safeguarding. None of this sounds safe or tenable long term.

And your poor DF’s DW.

@BunnyRuddington Thanks for your response. They have just rented a stair lift and purchased a wheelchair. So some improvements made. Appointment with Parkinson’s Nurse - April 2026. That’s ridiculous in my view. Sleep apnea is now a huge issue and nights are disturbed for many reasons. Our friend is falling asleep all the time - in the middle of meals.

I’ve suggested contacting the local Parkinson’s Charity but there’s a huge reluctance to do this. No idea why. They also have plenty of money so could afford help in the home. At least with getting up and washing. They won’t spend what they need to. We don’t understand this either.

No one has assessed their home. They are currently trying to assess this but way too late!

GP is taking more bloods for analysis but the NHS is very disjointed when there’s multiple things wrong. Friends wife says nhs records aren’t updated so each dr doesn’t know full picture. Everything has to be repeated. Our friends are staunch supporters of the nhs but now feel very let down. Access to services seems limited to those without careers living with them in their view.

Some of the earlier posters queried if the poster listing a long list of symptoms had Parkinson’s. Many issues on the list ARE associated with Parkinson’s. Not everyone gets all of them but the list isn’t wrong or necessarily suggesting something else.