First post

Hi everyone, not sure what I want to say really, just feel I need to make contact. My dear mum passed away just under 2 months ago having had Parkinson’s for 22 years. Unfortunately, mum contracted Covid and could battle no more. We are still grieving but unfortunately, today, my sister , has received results from a Datscan and has been told she too has Parkinson’s. She has an appt soon to see the consultant. I will go with her but what should I be asking as I’m hoping meds have improved in 22 years. I was also if the understanding that it was extremely rare for Parkinson’s to be inherited. Is this the case ?
Sorry for long post.Thanks x

Dear harribeau,

What a sad and difficult time for you, although you come over as a strong and resilient person.

Perhaps it’s not a case of inheriting this disease, but more of an unfortunate and unlucky coincidence - given the growing prevalence of it - that your sister has also succumbed. (My mother too had Parkinsons.)

I’m sure you’re right in your assumption that things have moved on since your mother’s diagnosis. Very best wishes to your sister, and of course to you in your ready support for her.


Hi Harribeau,
We’re sorry to hear how difficult things have been of late, but we wanted to just take a moment to offer you a warm welcome to the forum, where you will absolutely make contact with the best group of PWP and families/carers around, as Baz2 has beautifully illustrated. It won’t be long before you’ll hear from others, all of whom will have some valuable nugget of advice or support or general kindness to impart. We also wanted to make sure you’re aware of the exhaustive data on the website. You can start here, where we found some info on Parkinson’s and heredity. And please don’t hesitate to call our helpline, at 0808 800 0303. You don’t have to be a PWP and the question doesn’t have to be medical. Our advisers are brilliant and will do whatever is necessary to get you the specific support you need.
Again, welcome to the forum, and please accept our best wishes for you and your family,
Moderation Team

Hi @harribeau, welcome to the forum. Medications have come on in leaps and bounds since 22 years ago, it is a matter of what suits your sister. With me it is Madopar, i’m on 4 x 250mg per day but as you will learn on here we’re all different so what fits with me may not do so with your sister. The thing I tell people when going for appointments is to write down what they want to ask, it is very easy to forget something. You’ve not really told us much about your sisters condition, does she have a tremor, does she find things difficult to do, slow movement, memory loss, does she have constipation, walking in a peculiar manner or not swinging arms ? Have a chat with your sister about what she has wrong with her and write down questions that will give you the relevant answers. If you saw The Sun on Saturday there was a piece in there about Parkinsons which may help you to get a better understanding. In the meantime speak to your sister and then get back on here to ask us more questions so that we can tell you what to do.


Sending hugs and commiserations. Reaching out is always a good idea and I hope you’re able to grieve the loss of your Mum regardless of Parkinson’s loosing your Mum is tough the emotional waves come at different times; you might want to think about seeking bereavement support too. To have your sister also diagnosed at this time is a double blow snd must feel totally ‘unfair’. You don’t mention her age, there is lots of support from Parkinson’s U.K. for you and your sister. How did you feel your Mums Parkinson’s was treated by her neurology team ? If you have any doubts perhaps remember we have a choice as to where we are treated and there are hospitals of excellence for the treatment of Parkinson’s.
Sending resilience, strength and empathy xx