Hi new here, have early onset Parkinson's

Hi I’m Neil, aged 59, Ive lived in Scotland from my early twenties but I’m actually English, from the midlands area. Diagnosed with early onset in 2021. Presently px CL x 3 daily and rasagiline to improve CL performance, which generally works pretty well. I experience right sided weakness, rigidity, tremors, fatigue. Be nice to speak to others with early onset to share experience, gain and give support and maybe find out some new ways of coping I’m unaware of

Hi and welcome, @Neilrich65. You’ll find everyone here very friendly and supportive and I’m sure that members will be along soon to say hello and share their own experiences.

Have you had a chance to look around our site yet? We have helpful resources here: Young onset Parkinson's | Parkinson's UK. You’ll notice we list a podcast and some peer support groups. Coping techniques are so important and maybe you’ll find some there that you can add to your toolbox.

If you find yourself needing a bit more support on something that concerns you, our Helpline advisers are here to chat on 0808 800 0303.

It will be good to see you posting here, Neil.

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Hi welcome to the forum i was diagnosed last year but think have had it longer i take cocareldopa amatadine amitrriptyline PUK is a great help for info. My dyskesia happens anytime and i get excessive sweating. I do nordic walking which helps. I do have low red blood cells though which might be linked. My right leg is weak though and i am having protein shakes as i lost weight due to my dyskesia. I try and maintain a positive attitude.

Hi, Neil.

I’m new to the forum too - and also have only just been diagnosed. Here’s the intro I posted a few days ago.

'My name is John. I’m 70 years old and was diagnosed with Parkinson’s earlier this month - on my 47th wedding anniversary, in fact. Not the best anniversary present I’ve ever had, but hey-ho.

I first noticed a tremor in my left hand about a year ago. I was filling a glass with water, and my hand began shaking so badly I almost dropped the glass.

Took me a while to get a diagnosis (poor old NHS) but after a CT scan, followed by an MRI scan, I finally got to see a consultant who sent me for a DAT scan. The DAT scan confirmed his suspicions and he told me I have the condition and prescribed Madopar 50mg/12.5mg Levodopa+Benserazide.

At the moment my symptoms are mild. The fingers of my left hand sometimes twitch and my right hand has recently started to join in the fun, but not quite so enthusiastically. I’ve been a guitarist for the past 60 years, so the finger-twitching is a tad unwelcome, as is the insomnia.

I look forward to learning more about what lies ahead from members who have gone before me.

Oh, one positive thing that intrigues me. I lost my senses of smell and taste decades ago - sometime in my 30s I think - but in the past day or two I’ve noticed changes. I ate a strawberry this morning and I could actually taste it! Not the full taste I remember, but a definite hint of strawberry.

Same with my sense of smell. Flowers in the garden that I haven’t been able to smell in years have started tempting me with a slight perfume.

Could that be due to the medication, I wonder?

Anyway. I’m glad to be here and I look forward to meeting some of you.’

As you say, sharing experiences etc will be very valuable.

Hi John,

welcome I think. sorry to hear about your diagnosis. I’be noticed since starting co-benedopa that my sense of smell has improved. Don’t know if that’s coincidence or not but it’s quite pleasant.

Hi Neil, and welcome. I too am an Englishman, but lived in beautiful Scotland since around 1986. I’m 55, diagnosed a few years ago but looking back, knowing what I know now, I’ve had this disease since around 2017, maybe earlier.

My PD is progressing unfortunately. As well as my co-careldopa, I’ve very recently been given Opicapone as my ‘wear off’ was getting unbearable, but I’m happy to say it’s working very well. Long may it last! :grin:


Hi, Podd.

Interesting that you’ve found your sense of smell returning, too. I’m finding it’s a very gradual return and I’m not sure how far it will go or how long it will last, but even if it stops now it’s very welcome.

Hi Caz62, thanks for reply, appreciated. I think I probably had it a couple of years before my diagnosis too. I noticed my concentration, attention and memory weren’t as good, found I kind of zoned out alot especially in meetings at work or when my partner Susan was telling me some tale or other. I’ll need to look up Nordic walking sounds intriguing.

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Hello Neilrich65, I do Nordic Walking at least once most weeks and I love it. There is a particular technique to learn which can feel very alien to begin with but doesn’t take long to learn and is a good all round exercise. Hope you are able to give it a go - it is worth finding someone to show you the correct technique if you can although there are some good books around if you need. Good luck if you decide to give it a go

Thanks Janice, appreciate your welcome

One of my group does walking football and boxing