Desperately need advice- new to PD

Hi all! I need some advice please. My mum was sadly diagnosed last year and is in complete denial about the whole thing. She has become completely house bound due to anxiety and apathy and has zero social life. She has not started any meds but is completely unaware of how PD has affected her and her mental health. It is having a massive effect on the whole family as she becomes increasingly agitated if anyone tries to talk about it with her.
I am at a complete loss. I’m also terribly worried about my dad as he now has no life outside the house as he is afraid to leave her. We have offered all sorts of support but she rejects it all and again gets angry.
If you have gone through anything similar and have some advice, then I’d love to hear from you.

1 Like

Hi kin i wonder how old your mum is and about the lifestyle she enjoyed before her diagnosis.everyone reacts differently as we a know but i was someone who swept it all under the carpet as i was only 44 and my kids still young and i was still working.if i didnt mention it then it wasnt happening was my train of thought.it worked for me in a positive way.i had no time to be struck with pd i had things to do.i worked on fr another6 years so now im 10 years down the line. Was medically retired 4 years ago and still trying to ignore it although its sneaking up on me.my meds were also helpful i think i hope your mum has an easier time and someone can help her make sense of things.its a jumble of emotions for all the family xxx

Hi @Kin,

A warm welcome to the forum.

I am truly sorry to hear about your mum’s diagnosis and the affect it has had on her mental health.

Being diagnosed with Parkinson’s affects everyone differently and people can go through a range of emotions including apathy. It might help if your mum was able to speak to other people who are going through a similar situation as her. People with Parkinson’s have found it really helpful to join a local group for face to face peer support as well as this forum. Given that this has also affected your dad (which is completely understandable), he may also benefit from joining a local group and speakers to other carers.

We have a ‘newly diagnosed’ section website with a lot of information that will be helpful to you and your mum which you can access here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

There’s also a introductory to Parkinson’s guide in this section which contains information about symptoms, treatments and living with Parkinson’s. Lastly, our helpline and local advisers are here to answer any other questions you have so please give them a call on 0808 800 0303.

I hope you find this information helpful.

Best wishes,
Reah
Forum Community Manager

Hi Reah and Janice, thank you both so much for responding to my post.

Janice, my mum is now 65 and has been retired for quite some time now. We all thought initially that she was suffering from depression possibly due to retiring too soon. She used to run the pro shop on a golf course where my dad was the pro so they had a very active and social work life. Looking back, I think problems possibly started many years before retirement.

I wouldn’t mind my mother being in denial or sweeping it under the carpet if it was working for her - as it clearly did for you! I would be the same! Sometimes you don’t have time to dwell! Especially if, like you, you have a career and/or a young family.

I think women especially feel like they can’t worry about themselves. Who would worry about everyone else then!?

My mum has never been one to talk feelings or show emotion. I know the best thing for her would be to chat to other people, but because of her character and her increased anxiety this,at the moment, seems like an impossible feat.

Janice, do you mind me asking how you decided to start medication and how this has helped you? (Any pros/cons?) My mums neurologist said it was very much up to her when to start. I know so little about it.

I have so many questions but I don’t wish to bombard you!! Thank you so much though! It really means a lot and thank you for being so honest.

And thank you Rhea for your advice. I have emailed our local advisor!

Kin x

2 Likes

Hi @Kin,

I can see the difficult challenges you face with persuading your mum to attend a local group, but sometimes these things take time so please continue to be patient with her and know that our services will still be available to her when she’s ready to use them. :slightly_smiling_face:

Regarding her medication, I think you’d really benefit from contacting our helpline and speaking to one of our advisers about this. They can give you a lot of detailed information on this and can answer any burning questions that you have.

All the best,
Reah

Hi kin sorry to take so long bt i struggle with the site.i just did as consultant advised and took the drugs which made me nausseus fr a while then settled n ive never looked back.the main part fr me is that i refuse to stay in whille my pals r all out enjoyin thmselves…admittedly i cant dance easily anymore, lost my rythm think its anxiety and pals dont send me to the bar any more cos a half pint becomes a shot. I wish i cd offer you some real advice. Feel free to ask me anythn…but this is such a subjective condition and i know whats in the post for me but right now i will put up a gòod fight. Much love to your mum n family x

Hello,

My grandfather was diagnosed 3 years ago but has really struggled over the past year. He too has become house bound and isn’t keen to leave at all, to the point we couldn’t get him to go to his doctor’s appointment last month.

Are there anythings we could be doing at home to build his confidence? Games or activities?

Many thanks.