Fed up

[Emerlad_70]

My PMR has been manageable the last few months I have reduced my steroids to 9 mgs

But today I have been diagnosed with Parkinson’s disease . Which has been a shock and upsetting

So feeling sorry for myself

[PMRpro Ambassador]

I'm not surprised - all I can say I hear you and am sending you a virtual hug.

[DorsetLady PMRGCAuk volunteer]

Hi,

Very sorry to hear that. Don’t have much experience with Parkinson’s apart from my sister- in-law who had it for a very long time, so can’t help.

Perhaps it might be worth going to forum and introducing yourself -

healthunlocked.com/parkinso...

💐

[scats]

No wonder you are upset, what dreadful luck.

DL's reply seems good to me, if you can get the same support for the parkinsons as we get here for PMR it can only help you.

Wishing you all the best

[Emerlad_70]

Thanks I will join the Parkinson’s forum

[Blearyeyed in reply to Emerlad_70]

Definitely you need virtual hugs from two forums now and we can still help out with the support.

It new and raw , but just remember how well you have coped so far , you've already proved you can be strong from one condition, it's prepared you well to battle anything else into submission.

Take care XXX💐😘😘😘😍💐

[Hidden]

I am so sorry. It must've been a massive shock and it would be wrong NOT to feel sorry for yourself. 💜💜💜🌻

[HeronNS]

Once you're over the shock, have a look at the segment of this program which discusses Parkinsons:

cbc.ca/natureofthings/m_fea...

Also described here. I have read the book.

theguardian.com/science/201...

[MhairiP]

Sorry to hear your news. What with PMR & Parkinsons, no wonder you're fed up. Glad your PMR is under control at the moment. One day at a time...

[SheffieldJane]

You must be reeling! Sending you more hugs. Let us know when you learn more.

[Baileyw06]

Virtual 🤗

[JanetRosslyn]

Big hug from me.

[Constance13]

Don't blame you for feeling sorry for yourself - who wouldn't.

Please keep us informed! PMR is bad enough, but this addition is NOT good news.

Hugs and good wishes. 😟 💐💐

[Emerlad_70]

Thanks all for you hugs and good wishes I’m sure I will feel better when I come to terms with it I need to concentrate on the now not keep thinking about what will happen in the future. My consultant is a lovely man and very helpful

He has patients with it for 25years it is usually a slow progression illness

But the thought of not being able to talk or swallow if frightening x

[Pollypuds]

Hi, firstly I know what a shock to the system this diagnosis is especially if you were completely unaware. My husband had been "not himself" for around 3years and doctors visits resolved nothing telling him it was arthritis in knees and toes and toes turning under etc, constant falls, and trips to minor injuries when finally a wonderful nurse practitioners at minor injuries told us gently that to her and her colleague Parkinson's was obviously the cause. Great bolt from the blue but everything clicked into place. Relief to know at last why he was as he was. Great support around Parkinson's, tablets really helping. Adjusting as for every ailment takes time but don't panic! I wish you well, life with Parkinson's is ok😊

[PMRpro Ambassador in reply to Pollypuds]

Strange how many people see the early effects of Parkinson's better than doctors isn't it?

[Emerlad_70 in reply to PMRpro]

As my specialist said not many GP S have a lot of knowledge about it. They have so many conditions to think about each day

It must be hard

[PMRpro Ambassador in reply to Emerlad_70]

But they DO have a lot of patients WITH Parkinsons. They should be familiar with the typical effects on movement and know when to seek help in ruling it out. I'm not asking them to know what to do about it - but if they can't recognise when they are out of their depth, they are failing as GPs I think.

[Emerlad_70]

Thanks poly puds xx

[bunnymom]

Wishing you well today ❤️ What a shock to hear.

[Jackoh]

Wishing you well. Must have been such a shock.Let us know how you get on.

[Smokygirl]

Oh that is so not fair—— but try not to worry—- my hubby has had Parkinson’s for 11 years and he only retired from business last year. He is 85. He is Chairman of a Charity and manages OK —-with me cracking the whip!

He is tremor dominant, takes Sinemet and keeps busy which I truly think is the key.

It really is manageable! Huge hugs xxx

[Emerlad_70 in reply to Smokygirl]

Thank you yes I do keep busy xx

[Smokygirl in reply to Emerlad_70]

The other thing which really helps is exercise. I truly believe it is as good as the drugs. Walking is great. My hubby has to be pushed into going but it truly helps with his balance—— good for PMR too!

Also everyone seems to have a different version of the disease —- so don’t worry about things like swallowing—- it probably won’t happen to you. Carpe Diem!

[Emerlad_70 in reply to Smokygirl]

Yes I intend to join a class and I have a dog I walk xx

[Smokygirl]

Last piece of great advice—- Sing loudly in the shower La la la la up and down the scale and you won’t lose your voice! Promise! Xxx

[Emerlad_70]

Ha ha

[Fireleigh]

Hi Emerlad, I have been feeling achy and sorry for myself and now hearing what you are experiencing I’m ashamed. I will try to see the best in life and hope you get some support and sympathy on the ground. Very best wishes. F.

[Emerlad_70 in reply to Fireleigh]

Thanks x