Parkinsons diagnosis without a tremor?

[BlueJellycat]

Just that really. Gp suspects parkinsons but my relative hasnt got a tremor.

My dad had Parkinson's. He had a very characteristic posture and shuffling walk, and dementia, but no tremor.

My dad also had Parkinson's, symptoms as pp but no tremor. Didn't develop one either.

My late mil had Parkinson's and now even when we see someone on tv even without any tremors we can almost tell someone who has it . There are certain characteristics. Sorry I'm not explaining myself well at all but it's not all about tremors

Tremor is not always present

Tremor not needed for diagnosis. Have worked with Parkinson's for years, it's one of a very long list of symptoms.

someone on tv even without any tremors we can almost tell someone who has it

Sadly this, in fact not even on TV. I knew a friend had it long before he was diagnosed as in this case he didn't want to accept the fact he was unwell.

As other posters have said, my relative has Parkinsons with no tremor. Sorry that you are also dealing with this diagnosis.

Look on the Parkinson’s UK website

Thanks for the reply. Not what I wanted to hear but the gp said as soon they walked into the room they thought Parkinsons. So this isnt looking good.

Luckily my relative cant use Google so they dont fully understand. They also dont want to spend any money supporting an independent life and I have said they will have the choices made for them and will never consider poa.

It's my mum. She thinks some how she can carry on as she is. That's going to be possible is it?

Has your relative been referred to a neurologist? Slightly different scenario, but my dad was diagnosed with Huntington's disease later in life - he had a lot of symptoms looking back, and was physically very twitchy, but lacked the awful jerking movements characteristic of the disease.

GPs were at a loss. A neurologist took one look at him and knew. Blood tests confirmed the worst.

Please try to advocate for a neurology referral, if one isn't already in place.

@BlueJellycat I'm sorry to hear this. My
Mil refused to fully accept her diagnosis. She had a notion of refusing to give in and not letting it beat her which is all well and good but she wasn't helping herself at all. It only made things worse.

You'll hopefully get assigned to a Parkinson's nurse and they'll be able to start looking at things you can do to help her. It's not easy unfortunately but they reckon staying active and keeping an eye on blood sugar is really important according to recent research. See if you can find any of the Mike Tindall clips on the BBC website, he's been doing lots of talking about it.

My dad had Parkinson’s for 20 years, diagnosed in his 50s. It was fairly well controlled and he had a good quality of life until the final year or so, but never needed a wheelchair. He had a slight tremor in the beginning but went on to have rigidity rather than tremor. There is a particular ‘look’ and gait of a Parkinson’s patient.

He died peacefully of the effects of a stroke.

She has been reffered to neurology but been told it's almost a years wait! She lives in quite a deprived area with a hospital in specail measures so it might well take that long.

She says she finds standing from sitting very hard but when I mentioned buying a electric chair to sit her up she was very anti the idea. Quite happy to go on public transport and then struggle to get of the bus so theres no chance she would pay for a private consultation.

I didnt have this as a possibility on my radar. shes has got noticeably more frail in the last four years. She is quite stooped and shuffles and spends a lot of time standing up when I see her. I do think she also looks vacant sometimes but she still seems quite sharp. But most definitely not very self aware of her increasing immobility and what this means for her future options.

Sadly that's pretty standard for a neuro referral - my dad only got to see one after six months' waiting, as he fell off a ladder and broke a bone.

I really hope you get some answers soon OP, watching someone you love deteriorating is devastating

Has she started any new medications yet? They can be very effective. People diagnosed in their 70s can live independently with medications for many years. It depends on stage of diagnosis and individual response to medications. I hope she sees a neurologist soon, it would really help her to keep moving

My Dad had quite late onset Parkinson's alongside his dementia but a consultant he saw once wondered whether it was Parkinsonism instead: traits of Parkinson's including the tell-tale gait and expression and rigidity, no tremor, but affecting his lower limbs rather than one side upper and lower. Didn't make any difference really in the end as the dementia took hold, but I'd never even heard if it. Best wishes.

My Dad was originally diagnosed with Parkinson's ( no real tremor)but didn't respond well to the usual drugs. He was eventually diagnosed with progressive supranuclear palsy which is even worse than Parkinson's ( if that is possible). He deteriorated rapidly over 5 years and was almost totally paralysed by the end. It was horrible.

I think Parkinson's causes a collection of symptoms and not all people get them all, so not everyone gets the tremor.

My dad was diagnosed 12 years ago and has only occasionally had a mild tremor - but perhaps more as a side effect of one of the drugs rather than the Parkinson's itself. His involuntary movements take the form of larger-scale movements.

He's been relatively fortunate and for the first 7–8 years following diagnosis medication kept him really quite well. We're only just at the point of him getting a wheelchair and needing more physical care and we're 12 years since diagnosis.

It's my mum. She thinks some how she can carry on as she is. That's going to be possible is it?

sorry OP - I'd missed this when I posted. Your mum may well carry on relatively ok for longer than you might imagine, especially if she keeps as active and busy as possible which it sounds as though she will.

I guess the neuro referrals vary. I was reffered to neuro last year and had a MRI within 6 weeks. I'm a bit shocked dm has to wait so long. She in her late 70's and has two falls within the last four years where shes not been able to get up and stayed on the floor both times for more than 15 hours. But each time hasnt gone to the gp afterwards. I have been telling her to for two years and again she has been dismissive so I'm not sure if anything new has prompted her to go.

She has refused a walking frame or cane. This is going to be difficult. If she is diagnosed I either think she wont understand ( one of those people who doesnt ask lots of questions ) or decides she isnt going to get help or use a aid as that makes her old. Worries what others will think if shes seen with a walking stick.

I just never thought she would get diagnosed with a degenerative condition for some reason. I know it's not fatal but the though of her getting more immobile and it almost inevitably is a shock. She was active and with it not so long ago.

Was all set to type a load of stuff but you can find my comments here - under the same name, Newspaper Taxis of course.

www.mumsnet.com/talk/elderly_parents/3636689-Parkinsons

Her granting you LPA in Health and Welfare is most important imo, if she doesn't you are restricted in terms of how much you can help her.

Billy Connolly was of course diagnosed with Parkinson's - probably 10 years ago now - and it is what it is, I mean he seems in good spirits and picked up his BAFTA or at least phoned in his acceptance a few days ago. It really is different how it pans out for each case though.

This sounds so frightening for you and your mum - lots of sympathy.

I wanted to echo what others are saying. My uncle has Parkinson's. He was diagnosed about 12 years ago. For much of that time he's been much the same as ever - he has bad days, and it affects his walking, I would say it's only been in the last 3-4 years it has become really bad. And part of that, sadly, may have to do with covid - the lack of opportunities to exercise and be with people has really hit him hard.

I am not trying to be all Pollyanna and suggest it'll be fine, but I do think you shouldn't automatically assume your mum won't cope, especially if they find the right balance of medication to suit her.

I hope it all goes as well as possible.

My dad was also misdiagnosed with Parkinsons and eventually diagnosed with Progressive Supranuclear Palsy. He didn't have tremors.

PSP is horrible, my dad had it for 3 years.

my dad too. I’ve never “met” anyone else with a psp relative before. Told Parkinson’s 2014- no tremor, drugs didn’t work. Told psp 2015, died 2018.