My mum has sadly died after having Parkinsons for 20 years.
My mum was an amazing, kind, positive person who always told me that things would work out in the end.
When first diagnosed in 2003, she was told that a cure wasn’t far off.
It makes me sad that a cure never came. I don’t feel that we are any closer to knowing, 20 years later.
My main question is:- why are we none the wiser with coming to the root cause of Parkinsons? What would need to be true for us to find out?
I would like to describe our experience here, in case it helps other people.
If you are in the same situation with a family member who has Parkinsons, I would recommend that you get Lasting Power of Attorney whilst they have full capacity. I also have found it was good to get my mum’s final wishes before it comes to an emergency, with regards to a funeral and how she would like to be remembered. It gives me some peace knowing I have kept that information safe.
Other things I wish I had known:-
I was always grateful for the amazing people on this forum. Sometimes, myself and my family just felt lost and felt as though we had nowhere to turn, even with the help of forum members.
I think help/ advice ‘in person’ should be more readily available. We had a Parkinsons Nurse and the Hotline but honestly, in really bad periods, we felt there was nowhere really to turn.
We carried a fear for the future/ repressed it as we had no idea of what help there would be when we were no longer able to cope. This always caused a heavy weight of underlying stress for all of the family, including my mum, for many years.
As it turned out, after several emergencies, we got funded help through way of a local agency after CHC assessment. The 24 hour care was amazing. I understand this is a limited resource, but if we had known this had even existed, years ago, it would have gone a long way to ease family concerns and worries.
I hope this is helpful in sharing our personal experience. Thank you to everyone on here who helped me with their comforting words and wonderful advice over the years.