New to forum

Alan in N.I. diagnosed Jan 2018 but probably had PD long before that
Neurology services are next to none existent over here and I have seen a consultant twice in five years.
PD rules every aspect of my life I can do nothing I could do a few years ago, even a few hours sleep is impossible my anxiety is through the roof and just cannot relax at all.
I feel trapped inside my own body only allowed to look out on a world passing me by
No one seems to want to help I have tried so many times to reach … but I am afraid Parkinsons has beaten me
I pray each night that this suffering will end and I won’t have to face another day trying to cope with this cruel disease.

Hi @Alan1660, :wave:t3:

Welcome to the Parkinson’s UK forum.

We have an amazingly supportive community here and I’m sure our members will greet you with some words of encouragement along with advice based on their experiences with Parkinson’s.

Parkinson’s affects everyone differently and you’ve done the right things by seeking support from us. Anxiety is one of the common symptoms associated with the condition and If anxiety is affecting your daily life, it’s important to seek help from professionals, such as your GP or a counsellor.

Whilst there’s no cure for anxiety, there are things you can do to help manage your symptoms and help you feel more in control. We have a lot of helpful information on this via the Parkinson’s UK website here: Anxiety | Parkinson's UK

Once again, you are not alone and along with this community you can also speak to an adviser via our trusted helpline service, they have a wealth of knowledge on this and can provide you with additional support. They can also put you in touch with any other services to help with your symptoms. Please give us a call on 0808 800 0303.

I hope you find this information helpful.

Best wishes,
Forum Admin

Hello Alan 1660
It breaks my heart to read posts like yours and it tells me just how important it is to have good quality services for people with Parkinson’s. Although it is of no consolation to you, I think it fair to say that you would not be feeling so desperate and alone had you had access to regular reviews and your symptoms monitored and treated. Seeing a consultant twice in five years makes it almost worthless. Do you see anyone at all on anything like a regular basis.? You write that Parkinson’s services are virtually non existent ‘…over here…’ May I ask where over here is?
I see Reah has already replied to your post and given you reference points that may help and I do hope you are able to follow some of these things up. Feeling as you do I don’t think you will find it easy to do this, but you have been brave enough to come to the forum which is a start. I hope you can find a bit more courage and use a few of her suggestions.
I can’t deny that Parkinson’s is ultimately a cruel disease and it is equally true that some have a harder road to travel than others. It may not seem like much but you really are not alone here on the forum. It is true we can’t help in the conventional sense of the word, we are not physically with you, we only know about each other what we choose to disclose and when you are feeling so low as you are it may probably feel like nothing but what the forum can offer is a listening ear, a place where you can be honest about what you think and feel and where you won’t be judged. The very act of writing and posting your troubles can lighten the load a little, you’ve shared the burden if you like and I hope when you get a reply maybe even this one, it will spark a little flame of hope so that you can begin to believe when we say you are not alone here on the forum - they are not glib words but a truth,
I send my very best wishes to you.

Hello Alan
Is NI Northern Ireland ? I was truly saddened to read your post and hope very much you can muster motivation to follow up on the helpline number for Parkinsons UK that Reah has posted, it us a wonderful service.
As Tot has said let the effort you have taken to reach out to this forum be your first move forward yo a better way of life. I am no medical expert (indeed not a fellow Parkinson’s sufferer either) I am a wife and full time carer for my husband who has Parkinson’s and has been formally diagnosed for 12 years now. from reading your post it seems likely anxiety and depression have their claws into you at the moment and I hope your GP and local ‘Time to Talk’ type services could help you with this. Yes they are Parkinsons symptoms and getting help with them can make some of the other symptoms easier to cope with.
Yes it is a miserable disease but Parkinsons UK are there to help. Is there a local support group anywhere near to you ?
Keep reaching out, the forum is a great place, lets hope its a starting place for you to feel less desperate- All the Very Best. Jane

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Hi Alan1660,

Yes this is a dreadful disease and so many people don’t understand it. I was diagnosed a couple of years ago and realise now that I had symptoms several years before.

One thing I have learnt is that as low as you feel you must never let it get the better of you. I’m very much the same not being able to do the things I used to do. It is frustrating and upsetting as I’ve always been an active person and able to turn my hand to doing most things. I am realising that I must modify my life to cope, it’s the only way.

We are all in this together and need to fight it, hopefully one day there will be a cure.