Hi
I am nervously awaiting a neurologist appointment as I have lots of symptoms of PD. I just wondered if I am positive if I should tell my children as I look after grandchildren. I wouldn’t have otherwise
Hello Charliebear … I’d tell them. But it is your decision. Better to tell them than have something happen or them find out a few years down the road.
Best of luck.
Steve2
Hello Charliebear
I would agree with Steve2 in principle but I think you need to think carefully about things just now because you don’t actually have a formal diagnosis yet. Questions/comments that immediately come to my mind are (in no particular order) are:
I assume your children do not know you are being assessed and may have a Parkinson’s diagnosis or you wouldn’t be asking the question.
If so, don’t assume they haven’t noticed something. Communication is more than what you say or do, a lot of it comprises non verbal ‘cues.’ It is virtually impossible to stop ‘leakage’ of such cues so your children and others have noticed something different about you. There are many reasons why they may not have mentioned anything to you.
Only you can decide if it would be better to tell your children now or wait for a formal diagnosis. I think the answer to that would largely depend on the nature of the relationship you have with them. However there is, in my opinion, something to be said for them knowing at this stage - not least they could perhaps give you some support but also should you get a confirmed diagnosis, it won’t be such a shock that seemed to come out of the blue.
This is something of an assumption and my apologies if this is not correct, but I get the impression that you have partly posted the question you have as it is easier than to say you are scared about your future if you were to get a confirmed diagnosis, that if you did you wouldn’t be considered safe to look after your grandchildren and would lose this important role in your life - that may not be 100% accurate but you will I hope, get the gist. If this is so, it would be perfectly normal. Parkinson’s is not a generally well understood condition and it can seem as if you are looking into a deep back hole when waiting for a diagnosis where the only way is down. It can be a very difficult and scary time. The reality is not like that. It is true the early days post diagnosis can be challenging as you come to terms with things and while treatment options are sorted out which can take a bit of time. Things do settle down however and in most people progression of their Parkinson’s is slow and there is often a period of some years where it doesn’t impact on one’s life very much. Even when progression becomes apparent, the slow nature of progression usually means there is time to adjust and adapt. The medication, if it is considered this is the best thing for you, is very good at controlling symptoms once the right regime is found. If it is the case you have Parkinson’s you will find a way to live with it, if you give yourself a bit of time. There is no right or wrong way to live with Parkinson’s, only the way that is right for you. I don’t know if this will help you to make the decision about whether to tell your family or not but it has hopefully reassured you a little.
Personally I have always been open about my Parkinson’s. To me it is better people know than try to second guess and make inaccurate assumptions. It means family, friends and others take their cue from me so that I can live with my Parkinson’s my way. You can only do this however, when you reach the point of being comfortable with your diagnosis and this can take time.
I’m sorry I can’t givr a definitive answer to your question but I hope my comments give you some understanding of why I am not able to do this and will help you make the decision that is right for you. Do let us know how you are getting on.
Best wishes.
Tot
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