Losing my mother

Hello everyone - I am new to the forum. Please bare with as feeling a bit emotional!

I was wondering if I could get a bit of advice. My mother has developed some symptoms of PD after the last two months and she is awaiting a doctors appointment. Having researched her symptoms on the Internet (yes, I know), she is ticking many boxes.

  • Is it important to get some sort of diagnosis/investigations early despite mild symptoms?

  • Is it right to start medications early or wait as long as possible before beginning them?

  • Please can someone shed some light on how to deal with a diagnosis of PD in someone that you love. I find that I am getting obsessed with watching for her tremor. I feel totally out of control. I am worrying for her future and I do not want to lose her early on. I feel angry and upset. I want to help her the best I can and I terrified of her declining. She is in her 60s.

I had a lot more to ask but I have forgotten with all the tearful typing. I have read some forum posts on here and find everyone to be really enlightening and positive.


Hi Suzanr,
We wanted to take a moment to welcome you to the forum, and make you aware of some resources that can help with your questions, and make everything a little bit easier, before you are welcomed by our lovely community. Your best online resource is our website at Parkinsons.org.uk, which is easy to navigate and kept up to date on research, helpful articles, and previous forum discussions. This page would be a good place to start as it has loads of information for family of PWP. And we urge you to call our free and confidential helpline at 0808 800 0303, where our friendly and highly knowledgeable advisers would be happy to answer each of your questions and provide you with more coping tools, including assistance organizations in your area.
Best wishes to you and your Mum,
Moderation Team

1 Like

Hello Suzanr
I felt compelled to write in reply to your post but don’t really know how best to help or where to start, you sound so desperate. In the end I decided just to jump in and give you the best answer I can with an assumption of a Parkinson’s diagnosis and apologies if it is a bit jumbled, I call it off the top of my head writing!

First to tell you I have Parkinson’s, younger than your mother on diagnosis, nearly 12 years on from my own diagnosis, still doing ok and enjoying life. I also have a form of hydrocephalus diagnosed some time after the Parkinson’s.

To answer your questions first but please bear in mind of necessity I am generalising greatly.
Re early diagnosis. This is not always as clear cut as you may think. There is not a definitive test and clinical observations and scans are the usual route. This can be a lengthy process for some as symptoms can be similar to a range of conditions and the last thing you want is a misdiagnosis.
Re medication. This is a huge and complex subject but the simple answer is usually people do not start medication until their symptoms begin to have a negative impact on their lives. The point at which it is introduced and what should be agreed between your mother and her consultant.
Re her future. Parkinson’s is not of itself life shortening, in most it is a slow moving condition and although I am not going to tell you its a barrel of laughs, it can be frustrating and challenging, it is also not the end of the world unless you choose to see it that way. It is possible to have a good life living with Parkinson’s.

What else can I tell you that may help. First may be something you’ve already picked up on as you have been reading some posts and that is Parkinson’s is not a well understood condition. That’s partly because it is hugely complex and affects everyone differently. People post to the forum wanting the one thing we can’t really give ie answers. I don’t even know what my own future will be let alone second guess anyone else’s. Personally I think it is fear of the unknown, the uncertainty of one’s future that frightens most. The early days can be rocky, emotions all over the place and so on but eventually things do settle down and your mother will find her own way to live with it - we all do but it’s a question of finding what suits you.

For me, my way, is to stay positive and I work hard to maintain this. I do not define myself by my Parkinson’s I am always Tot first, just happen to have Parkinson’s. I choose to be open about my condition because it’s easier for me - nobody second guessing, folk know I will ask for help if I need it, etc. I don’t feel sorry for myself most of the time nor do I want anyone’s pity. Ì plan ahead only what I need to keep life going and otherwise make the most of today - that only comes once and why waste that worrying about my uncertain future which may or may not be.

There is general agreement that a balanced diet and exercise are important too and these also help my need to stay positive.

Finally because I think I’ve gone on for long enough, don’t want to bore you, I refer back to your post. I do appreciate it is hard to watch someone you love and care about apparently struggle but please in your efforts to help and support don’t take over. Let your mum know you’re there for her but take your lead from her. Sometimes it’s better to listen than do.

Finally, finally the forum is here for you, your mother or anyone else if needed 24/7. No-one need feel alone. Do hope this helps a bit.


HI Suzanr
To be honest Suzanr i feel Tot has said it all and wonderfully written. I am in my early sixty’s and seven or eight years into my journey. :rofl: ( i have forgot exactly ). I started writing a journal and found this helpful. And I was struggling to find me, Esme . I had become Parkinson and somewhere in there was Esme. Joining the forum has helped with this too.

Which brings me too a new post i was going to put on the forum today. I logged on this morning and then saw your post Suzanr, So you were the reason I was awake at 3 this morning ! :smiley:. ( joking of course. )

My late partner had a saying…
"Everything in life is as it’s meant to be
Or it would be different. "
I would say…yes but… and he would laugh at me and say
“Doesnt mean it’s comfortable though.”

So wipe those tears away .We are here for you
Esme x


Hi @Suzanr Welcome to the Parky Club, you have been given good advice by @Tot and @Esme, what I will add to this is for you to write down all the questions you want to ask on here and then go for it !! The same applies if your attending an appointment with your Mum. A good tip is NOT to Google your Mum’s condition as you will get different answers and you’re no better off than when you started. If you want answers, this is the place to be, as @Tot has said you can get access here 24/7, there’s always someone about to give you an answer.


1 Like