Hi everyone.

I’m new here, but want some advice.

My mum got diagnosed about 3 years ago. She’s 72.

She lives alone, and does very little.

Before her diagnosis, she wasn’t very active or sociable, so it’s hard separating the parkinsons from her and her personality.

she is waiting for a magic pill to cure her, her apathy is the only constant symptom. Her physical symptoms haven’t progressed.

It’s very hard to know how to support her as by nature she’s stubborn. She won’t talk about herself or her feelings, and gets very annoyed if me or my brother try to suggest things to her.

Just want some advice as to how to support someone like her, if anyone has any suggestions.

Kate x

Hello Karen 81 and welcome to the forum
It is very astute of you to recognise that your mother’s pre-morbid personality needs to be taken into account when a chronic condition like Parkinson’s develops. I think even professionals forget sometimes that everyone has a history before the diagnosis and that not everything, as with your mother’s general social capabilities is the fault of the condition. It is an important point that should perhaps be more seriously considered than it often is. I once worked with a lady with dementia, she was aggressive both physically and verbally and had no conversation to speak of. Very difficult lady to work with. Turns out she used to be senior buyer with a big department store. Hard to see in the lady I met but important as if you could get the conversation to come round to where she worked it was possible to have a brief conversation of sorts and for a very short while wherr you could she that senior buyer. So it can be very important that this aspect be taken into account.

However that doesn’t help you and I don’t have any magic answers. The short answer is she won’t be the only one waiting for a magic pill and for some it’s what they need to do to survive and live with the diagnosis. Apathy can be an awful symptom and common in Parkinson’s but I sometimes think it gets mixed up with what family and friends see and think and conclude that he or she should be doing more but it may be that the person is actually OK. In your mother’s case how does the apathy present that makes you think it is different to her usual personality? If you can hone in on that you maybe have a start point to working out how best to support her, if indeed she will let you. I know it seems a long time but 3 years since diagnosis is not necessarily long enough for someone to get used to it and a few never do, perhaps your mum is one of those.

There may be an element of depression in there somewhere which may be helped by medication but I think you may have a hard time getting her to agree to that.

I am second guessing here of course and may be way off the mark. Strikes me you and your brother are already doing the right thing, hanging on there and being there for your mum however hard she is making it for you both. Keep the lines of communication open, chip away as best you can and just be there for her. She may give you a way in at some point but in the meantime you are doing the best you can and that’s all you can do.

Hi Kate, I read your post with great interest as my daughter and son want to support me. I was diagnosed a few weeks ago, but my symptoms can be quite severe at times.

Since I was diagnosed, I have learned as much as I can about the disease. At first I cried a lot, as I was in such shock. I kept looking to the future and panicking about what it would be like, whether I could look after myself or not. I was a little bit down.

I made the decision to do as much as I possibly could for myself, in the hope that I will deter the progression of PD. Sometimes our state of mind is more important than anything else, because it determines what you can, will or don’t do. Its a personal choice. I have started dancing in my living room anytime I feel like it. I just put the music on and dance. I also started Pilates and walking a lot which is really difficult and sometimes painful. I know when to stop. I am just hoping that it will give me more mobility, than doing nothing.

The way in which my children help me is mainly through conversation, and offering to come on walks with me, or out for coffee. Personally I find being out of the house, doing something, helps me to stay positive.

Your mum might be a bit depressed with the PD. All you need to do is be there, be positive, chat, maybe suggest a walk or something out of the house. Encourage her.

There is no such thing as a magic pill, she could be waiting forever. Life is for living now, and for being grateful that you have each other. You and your brother are trying to do your best, just don’t give up on her. We are all different. I do hope this is a little bit helpful and I wish you, your brother and your mum all the best of luck xxx

Perhaps, you could show her this, let her know how you feel. That might help her too. xx

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Well said Jacky3 couldn’t agree more.

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Hi Tot,
It’s personal, isn’t it, just like our choices I guess x

yes it is. All you can do is get lots of information, listen to various views and then make the best decision you can for the circumstances in which you find yourself at that time. I personally choose to adopt a positive attitude and it very much mirrors your own post. I don’t know if there is another life as some believe but even if there is, surely we should not let this one pass us by just because fate has dealt us a difficult card. As I have said many times on the forum, being positive doesn’t mean a naive belief that everything will be OK. i too have my moments; but it is still. my life Parkinson’s and all.

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