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.
Tot
( 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.
. ( joking of course. )