Mum newly diagnosed

Hi. My mum was diagnosed 3 weeks ago. We were told to make a gp appointment in order to get medication started, that appointment is this Friday. The consultant also said we would get appointments for Physio and speech and language for a swallow test (i dont understand that one, i know she had some trouble eating rice the other day). Also the parkingsons nurse would be in touch.
We haven’t heard anything yet so phoned the consultant and her secretary said no letters have been written yet. I dont know what to do. Do we still go the gp on Friday?
Mum is getting worse, she stumbles a lot and has fallen over a couple of times, her hands shake all the time and she’s not sleeping.
I feel so useless and really need the help of physio and nurse.
It’s all seems to be happening too quickly and I’m worried.
Any advice would be great.
Thank you

Hello Mab, it is not at all surprising that you don’t know if you are coming or going, it must feel like everything is falling apart at speed and you can do little but watch it happen. First thing to say is take a deep breath and stop trying to sort everything out at once, that will just get you feeling more and more out of control which will help no-one, least of all your Mum. If you try and stay calm I am sure that will help her since I suspect she is trying to get her head round everything and also being a mum, not worry you too. It’s not an easy thing to do, but please try. Second thing is in your shoes I would definitely keep the GP appointment as it is the only tangible thing you have at the moment. Hospital letters from consultants and the like can be a bit slow and depending how you feel after the GP appointment you can decide what you need to do next. I would be inclined to make regular contact with the hospital to follow up those letters. My experience was much more straightforward than yours, my consultant gave me prescriptions for my first meds and continues to take a lead if and as they need to change now but I am well aware others have a more complicated and frustrating time, so just be aware you may need to push them a bit; hopefully that won’t be necessary. It is difficult to comment on what is happening to your mum as Parkinson’s as you will learn, is very individual but what I can say with some accuracy is that the early days are always hard, mixed emotions, worry, not understanding what is happening, all you can see is a bleak future and so on. In time things will settle and things won’t seem so out of control. It is not an easy condition to live with but nor is it impossible although the early days can feel like it. The best thing you can do for your mum is be there as you are doing, try and keep calm so that you can take in all the information and ask questions, and believe you and your mum will get through this nightmare patch but that it may take a bit of sorting out. I have no wish to be pessimistic but I would be doing you a disservice if I led you to believe everything is easily sorted, maybe it will but the reality is unlikely to be that clear cut. Hopefully the ball will get rolling quite quickly. The forum is always here for you to give whatever support you need and it is a safe place to voice whatever you need, no-one will judge. For now I will just say let us know how you are getting on and if positive thoughts help I send you bucket loads and will be right here alongside you if you need. Big hugs and take care.

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Hi Mab,

Welcome to the forum. I’m sure that other members will be able to advise and support you.
Sorry to hear about your mother’s diagnosis. It’s understandable that you are both feeling stressed and worried at this difficult time.
I think it’s worth going to the Doctor on Friday, as this will provide you both with an opportunity to ask some of the questions you have regarding specialists and talk through some of the symptoms your mum is experiencing.

Our helpline is also available to you for support and advice on 0808 800 0303 during working hours on weekdays and from 10-2 on Saturdays. Also, you can contact them by e-mail via [email protected]

All the best,
Moderation Team

Hello @Mab welcome to the forum and you will no doubt find over time we are avsupportivecand safe place to be to discuss anything.

Firstly thinking back to my first few weeks after being told I had Parkinson’s was a bit up and down with lots of concerns and worries. As @Tot has already said things do run to slowly for some, which is my experience with letters from consultant to GP. If I was you I would definitely keep the GP appointment and go with a list of questions you and your Mum have as otherwise you might forget to ask them. So pleased to hear that a PD nurse is already involved and if you have their details give them a call as well with any questions. Also any worries give Parkinson Helpline a call fot answers and information guides or post here where someone might be able to offer support or first hand experience. Though as you will find out we all have different issues with Parky.
So go to the GP, give yourself and your Mum sometime to process the new dx of Parky. If you want to post again and let us all know how you got on. Easy to say but try and be positive in the challenges ahead. :sunglasses:

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hi Mab it’s hard to cope on your own but soon you will get help even though you mum has PD she is still mum. i looked after my mum for 10 years she had dementia and after she passed away she was 99 years of age i was diagnosed with pd, look for leaflets from “parkinson’s uk” they have lost of information in and will explain differant pd conditions, Most people who hear pd said !! just think it’s shaking and tremor. If you join parkinson’ uk you will gets lots of help and advice i joined 2010 and have contacted them quite a few times.

Thank you

Thank you so much for your encouragement x

Hi Mab just one more thing Iknow you have a lot to cope with, but you do not say how old you are don;t forget your mum will need a lot of looking after so do claim what you are entitela to, ask your local citizens advice. I am sure your mum could claim AA

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