Hello everyone my mother was recently diagnosed with PD. We are staying positive and it has been great reading a lot of the posts on this forum, it is clearly a very helpful and supportive place. We are going to get a specialist neurology physiotherapist to help mum out with some exercises, she is also going to continue walking (not overly fast but I figured that was better than nothing!). As well as this, she has been prescribed Levodopa which she has started. I wanted to ask, is there anything else you found very helpful at the outset of your diagnosis? I have read that a healthy diet is beneficial too, would supplements or any specific vitamins help? Thanks for any and all words of advice!
Jo
Hi @Jo9,
I wanted to take a moment and welcome you to the community. I’m glad you’re already finding the forum helpful. We really do have a great bunch here - and hopefully some of our members will be along soon to say hello and offer advice.
In case you haven’t yet seen it, we do have a Caring For Someone With Parkinson’s section which may offer some helpful tips, including a carer’s guide at the bottom, as well as a Recently Diagnosed section.
You can also reach out to our advisers on the helpline on 0808 800 0303 with any questions you may have. They can offer some suggestions and direction on next steps.
Best wishes,
Joy
Forum Moderation Team
Hello Jo9
Welcome to the forum and it was nice to hear you’re finding it helpful. The question you raised is perfectly reasonable and I have been mulling over what to write in reply. I was diagnosed 11 years ago and don’t recollect changing very much in the early days and even now don’t take supplements etc and therein lies the rub. Parkinson’s as you may have gathered from your reading, is generally described as being very individual and what works for one does not necessarily work for someone else and there is an element of trial and error in many aspects of the condition. There is nothing wrong by finding out about what others are doing or find helpful but a judgement call needs to be made as to whether this is worth pursuing or not for your mother.
As a by the by I personally think you have a good approach to supporting your mother in her Parkinson’s but then, if you have happened across any of my posts you will know that positivity is the single most important thing to me and has served me well. It’s not everyone’s way. Some do well by seeing it as a battle and fight it all the way, still others trawl all avenues to follow the next big thing or possible cure. There is no right or wrong way only what works for the person. Then of course, we have to live with the inconsistency of Parkinson’s some days are good some less so, sometimes not even consistent through the day. It can be challenging and frustrating of course, but it is not the end of the world unless you choose to see it that way. I and many on the forum may have to do things a bit differently but still have a good quality of life get on with the business of living same as anybody else.
If I might mention something in passing. The impact of Parkinson’s is felt by all who know a person living with it. It is hard to watch someone apparently struggling or being a bit slow but in your efforts to help, please be mindful that you are not taking over. Parkinson’s can be a stealer of confidence and if people keep helping when the person is still capable it can have huge implications for self esteem. I made it clear early on I would ask if I needed help which has long since been taken as read. And please please don’t adopt a position of disbelief if the person with parkinson’s doesn’t immediately agree with the latest thing you heard or saw helps manage the condition; it may well do but it doesn’t suddenly make you something you’re not. I’ve lost count of the times people have told me they have seen or heard the tango helps with movement. I didn’t want to learn the tango before my diagnosis I don’t know why anyone is surprised that I’m not immediately trying to find a teacher when in their eyes why would I turn down something that would help. Its no different to everyone knowing that regular exercise is beneficial but that doesn’t suddenly make everyone do it. That’s just one example. It is good that your mother clearly has a strong supporting cast and I wish you all well but it is your mother who is living with it and that does make her experience different. Listening can be more important than looking for ways to help sometimes.
I know I have not strictly speaking helped much with your request but do hope you are able to take something from my ramblings.
Good luck.
Tot
Hi Tot
Thank you so much for your kind and helpful reply, I have read your previous posts and your positivity is infectious! I completely understand and one thing we as a family have agreed upon is that we aren’t going to start to badger mum about things unnecessarily! She is very keen to be treated just the same, and in that way I’ve told her that she has to then simply tell me if she finds some things too difficult and we could see what to do about tweaking it to make it slightly easier.
I have been very comforted by the fact that you and others on the forum have spoken about your good quality of life 11+ Years after diagnosis. After the initial shock I think we needed to settle back into normality, which we are trying to do. It clearly isn’t something which takes over overnight and we need to be able to switch off from it so that mum also feels like we aren’t constantly thinking about it. I don’t want Parkinson’s to overshadow who she is as a person.
Very useful advice about not taking over - I can only imagine the frustrations that can be felt with Parkinson’s and I’m conscious that mum will not want to feel like all eyes are constantly on her, that we are ready to swoop in at any moment to help. Of course we are ready to help, but she seems very keen to still do things by herself and approach us if needs be. I just need to trust that she will do that and not struggle unnecessarily! I would hate for her to feel like she is any sort of burden for us as we love her so much.
On that note, no new tangos for mum anytime soon!!
Hope you are keeping well in your journey and enjoying the lovely weather we have had recently.
Thanks again for your words of wisdom,
Jo
Hello Jo9
I just had to stop by to thank you for your lovely reply. It is always a bit of a leap into the unknown when responding to posts because you only have limited information but as cruise controller (who you’ve probably come across) tells me people will take from it what they will.
Your taking the time to write as you have is much appreciated. For what it’s worth your mother’s approach sounds pretty much like my own. You will probably find however, that however hard you try you probably won’t be able to forget it nor stop keeping a close eye on your mum it’s the nature of the beast as it were but you must trust your mum even when she looks awkward or struggling - looking like it doesn’t mean she is. I am aware that family and friends all keep an eye on me but know I will ask and therefore it is not always centre stage in the conversation which is ok by me. Follow your mum’s lead and you’ll be doing alright by her. She’s lucky to have you all.
Tot
PS Did you know there is a carers family and friends category on the forum which may be of interest
Hi Tot
Thank you so much for your replies and again, excellent advice! I do have one eye on mum at times although I’m trying not to make it too obvious! I’m very glad to hear your family and friends are also looking out for you. I’m going to head over to the carers section to see if there are any other useful tips for me there!
Take care,
Jo
@Tot whenever I see a post is written by you I always know it will be worth reading. As a person with Parkinson’s, thank you for your efforts in this forum, making it a place worth visiting.
@Jo9 your mum is a lucky lady having you on her side.
to both of you
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Pcyc thank you for your very kind words. I am truly stunned, it is a huge compliment but i do no more than give an honest reply as I see it. If you are able to take something worthwhile from my ramblings that helps, then I’m happy. Supporting each other is the name of the game but thank you - who wouldn’t be pleased and a little humbled to hear such words.
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Hi Tot, please don’t under estimate ‘your ramblings’ as you call them, you have been a constant for me with your words of inspiration, your reasoning when I can’t see it for myself and have truly lifted me up, sending a hug and echo Pcyc’s comments. THANK YOU!!
Thank you AnaElsa, like Pcyc you have left me rather at a loss for words but I do thank you; it was a lovely post to read and I am very happy to know my posts have helped you, that means a lot.
Hi Tot,
I want to say thank you for this comment. I had my MRI in April, and it has come back consistent with Parkinson’s. I am waiting to be reassessed in August. Currently, I have not told many people about this, my main concern being that people will start treating me differently. I already see that happening. I will follow your lead about saying if I need help, I will ask for it. Thank you again.
You’re more than welcome CJK. It can be hard work initially as others learn to accept that you are quite capable of asking for help if you need it but once they have generally speaking they sit on their hands most of the time. Good luck.
Tot
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Thank you so much Pcyc what a lovely thing to say and has cheered me up this Sunday evening.
I hope you are all keeping well! Mum has received medication and is starting to work her way up through the doses. We are positive for the future and looking forward to continuing to make lots of happy memories over the years.
This is such a brilliant forum, I hope you don’t mind if I check in from time to time.
Love Jo
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