Hello, new to the forum - at my wits end and really needed to find other’s that might be experiencing something similar. My mum was diagnosed with VPD a couple of years ago, she’s had symptoms for a few years before that and we were initially told she had MSA, but the specialist changed the diagnosis. She lives independently and can manage most things, although very slow movement, speech affected, incontinent and quality of life seriously affected. She refuses to have any help in the house, plays down how difficult things are for her, refuses to see her specialist any more and I have today found out she has stopped taking all of her medication as she felt it wasn’t helping her in any way. She has had a headache for 3 weeks on one side of her head, with an irritated red eye and irritated skin on her face - I’ve had an ambualnce out initially and they didn’t seem worried and she’s seen the GP today who has just given stronger painkillers. I can see something isn’t right, she seems more vacant than usual, communication is even less than usual, even on messages which is usually her preferred way of communicating. She won’t/ can’t tell me how she feels, she just says ‘I’m ok’, when I can see that she isn’t. I feel helpless, I just don’t know what I should or can do to help her. Has anyone got experience of dealing with this or any advice? I found out she has a stroke assessment appointment at the local health centre soon, so I’ll be going to that and have told her I would like to be at all of her medical appointments, to advocate for her and help her, but I’m not confident she will tell me when they are. Any advice from anyone on here would be so gratefully received.
Good afternoon Hels … I am 71, I was diagnosed with Atypical Parkinson’s in June 2023.
Like your Mum I have probably had this for a few years. I have just had an Mri Brain scan as it is suspected that I may have Vascular Parkinson’s.
Like your Mum I live alone and value my independence. I have no close family and like it that I make all the decisions on my treatment etc. I would hate it if someone was making these decisions for me and I had no say in the matter.
Of course this is an impossible situation for you as a caring daughter. You think you know what is best and want to help.
Your Mum has the right to live her life as she wants, I’m sure that if you were in her situation you might be the same. Obviously you are a strong character who likes to be in control.
Keep talking to your Mum and be there if she says she wants help.
Not too controversial an opinion I hope.
Best wishes
Steve2
I’m very sorry to hear that but sounds like you are managing your health in the best way for yourself and that’s great. Certainly not someone that likes to be in control, this was more a call for advice and support as a carer / family member who feels quite helpless and doesn’t know whether the NHS is taking the recent developments seriously and if this is something that I should be doing more to help with, or if it sounds like it is in fact “just a headache”.
Hi Hels40,
Welcome to the forum. We’re so sorry to hear that you’re struggling but please know we’re here for you. Please give our free helpline a call, our team of Parkinson’s Nurses might be able to give you some advice in regards to your mum’s care and steps you can take to help support her: 0808 800 0303.
Best wishes
Parkinson’s UK Moderation Team
Hello Hels40 sounds like a very tough time you are struggling to deal with.
I don’t have particular knowledge of vascular PD. There is another condition, not specifically Parkinsons related. That is Giant Cell Arteritis a condition that creates inflammation in particular to the temporal blood vessels creating bad headaches. Left untreated the pressure can cause blindness. A blood test is required checking inflammation factor. Maybe worth checking on. Best Wishes Jane