My mum (age 74) was diagnosed last summer. She started the medication (levodopa) and had a DAT scan which confirmed it. She had other brain scans which showed nothing else of concern.
As well as the physical symptoms, tremor, slowness and stiffness, balance, handwriting etc., she has some very concerning symptoms that I feel very worried about.
She struggles with speech and has withdrawn from conversation in general. She seems very apathetic about her illness and doesn’t make much effort at all to find out ways to help herself. She is better at communicating over text than she is verbally, but still she gets muddled up and sometimes doesn’t make sense. She seems to have lost empathy and the ability to be social. She lives alone, not in the UK, and it’s extremely concerning to me and my sibling. She has withdrawn and doesn’t seem motivated at all to help herself get better, or perhaps it’s denial.
She isn’t keen on the Levodopa as she says it makes her feel ‘swimmy’ in the head- and at her last neurology appointment the doctor lowered the dose… I think this has made everything worse. However she doesn’t seem to notice or care.
It would be great to hear any thoughts on what is going on here. Are these normal symptoms? I had always (perhaps wrongly) associated Parkinsons with physical issues but my mum is struggling with more than that.
Hello @SarahA, thank you for your first post, and welcome to the forum. We hope you’ll find the community a helpful way to share experiences, get support, and learn from others who are supporting loved ones with Parkinson’s.
It must be difficult supporting your mum from afar. It’s clear that you and your sibling care about your mum lots and want to support her as best as you can. Alongside motor and non-motor symptoms, there are also a range of behavioural symptoms that people with Parkinson’s may experience, which can impact mood, cognitive ability, and outlook: Behavioural and cognitive symptoms | Parkinson's UK . It sounds like these are impacting your mum at the moment.
Feelings of apathy can be temporary, but frustrating if you’re looking after someone who experiences it. We’ve got some tips for managing if your loved one has apathy, which might be helpful for you and your sibling: Managing apathy if your loved one has Parkinson's | Parkinson's UK
We also have a free, confidential helpline if you’d like further support and to speak to one of our trained advisors: 0808 800 0303.
It’s also important to remember that looking after someone with apathy can also affect your own mental health, so you need to look after yourself too.
I live in South Africa, so I am not sure, when you say ‘last summer’ how long ago that was 6 months/a year….
We all know that PD affects everyone in different ways. It is like a car, all have an engine, wheels and a ‘body’, but that’s where the similarities end.
However if it was only 6-8 months ago it seems strange that the symptoms have progressed incredibly fast.
Unless of course she has had the symptoms for some time already and was only diagnosed , recently.
Once we know the time frames etc, I am sure the moderators and forum members will be able to give you advice on how to try and handle the situation.
Thanks for the reply. By last summer I mean around 9 months ago.
I think the issues have been going on for around 4-5 years - that’s when I started to notice small changes in her. She also gave up driving around that time, she never really explained why, but looking back I think she had started to feel unsteady.
I think the biggest concern for me is the psychological symptoms which make it very hard to communicate with her and she does seem quite ‘zombie’ like.
