Hello!


#1

I wonder if anyone can help please? My nan has recently been diagnosed with Parkinson’s Disease by her consultant and has been admitted to hospital vis Ambulance after a suspected UTI (thankfully it’s not that!) We’ve been fighting for a diagnosis for over two years as her mobility has got worse and she has severe anxiety and depression (which was her previous diagnosis before this by her GP, she was given anti depressants which didn’t make any difference. We fought for more help and answers as we weren’t happy and second opinions, we had a mental health team after two years as she lost her husband 4 years ago due to COPD.) Eventually after lots of second opinions and wanting answers, she also has carers too! After she had a severe mental health breakdown a year ago (little known to think this could have been Parkinson’s related) me and my mum, plus my auntie help care for my nan. Her son’s don’t help sadly or want to know with my nan, she’s very paranoid, anxious and has all the classic symptoms of PD. Me and my mum were researching it this year, and it fit my nan like a glove almost? Then we knew that this wasn’t right. She was previously diagnosed twice by another GP and that she needs a Neurologist urgently! Unfortunately My nan is very stubborn and hates hospitals, she hasn’t been in for a long period since having her cataracts done back in 2006 for a few hours and even then she was terrified, but she went though it okay! She’s 79 years old, and she also has High Blood Pressure and Diabetes (which she is on medication for). Sadly her son (as my nan wasn’t in a very good frame of mind made her throw away the Neurology letter) and my nan was throwing away three more of them, plus hanging up phone calls as well! As you can imagine we weren’t very happy and told her that she’ll be okay and that we’ll be with her every step of the way. We’ve cared for her for over 4 years, alongside we cared for my grandad as well with end of life care. Thankfully now she’s starting to accept it, and she’s very stubborn and yet very active too. Sadly with PD it did get her not that way, plus she does have a fear of going outside as she’s struggled to get outside the door since the passing of my grandad made this exacerbated also as that’s why she had the mental health team in. She’s now having Levodopa & Carbidopa, physio and a Parkinson’s Nurse to help her as she’s going to be in for at least three weeks. We’re seeing her every day, and making sure she’s okay and having fresh clothes, towels and whatnot! Plus she’s going to have a wetroom fitted too, as we’ve been fighting for that for years due to her loss of mobility. We are all new to this :purple_heart:


#2

Hi Beckiknox,
Welcome to the community and thank you for your post.
We’re sure some of our members will offer you their support and advice. However, if not, someone from the Parkinson’s UK moderation team will respond to you as soon as possible. If you need urgent advice please contact our helpline on 0808 800 0303 to speak to a Parkinson’s UK adviser.

Best wishes,
Edwina


#3

Hi @beckikn0x,

A warm welcome to the forum.

It sounds like your Nan has been through a tumultuous time which I’m truly sorry to hear about. The length of time to get a diagnosis must have been extremely frustrating for you and your family. However, it’s good to hear that she now has a Parkinson’s nurse and a physiotherapist. Along with the medication, they’ll all help her to manage her symptoms so hopefully you’ll start to see an improvement in her general wellbeing.

Given that you and your mum are the main carers for your Nan, you may want to look at our Carers’ support page on the Parkinson’s UK website for practical information and support to help you both as carers.

You can also give our helpline a call on 0808 800 0303 or email them at hello@parkinsons.org.uk to speak to one of our advisers regarding any queries you may have about the health of your Nan.

I hope you find the above information useful and please keep us posted on your Nan’s health, we’re here to support you.

Best wishes,
Reah


#4

Thank you so much Reah! It’s been a long lengthy battle and lots of family members not really listening to me and my mum trying to fight for my nan’s diagnosis. But she does now have them which is a huge help and she has been diagnosed today with Idiopathic Parkinson’s Disease via a DATSCAN and her consultant Dr Hancock and her scam had shown very low levels of Dopamine, which has sadly caused a lot of her problems with mobility and slurred speech which is why they’re also getting in speech and language therapy to help her too! She’s been very frightened but we’ve been there for her every step of the way. But thank you very much we will both look at that and give it a look! I shall do muchly. Thank you for the support.
Becky.


#5

Hi @beckikn0x,

You’re more than welcome and I’m glad to hear that your Nan’s doctor has arranged for her to see a speech and language therapist.

Please feel free to contact us at anytime with any more questions and we’ll be happy to help.

Please take care.

Best wishes,
Reah