Early Onset Parkinson's


#1

Hi I'm new to the forum.

My dad is now in his 50's and has Early Onset Parkinson's. He has had it for coming up to 20 years now and is pretty bad. Although he has just had Deep Brain Stimulation (DBS) which has helped a lot with his movement (admitting not as much as we had hoped for). He is moving a lot less now and also not getting 'frozen up' so much any more either. His mind is not all there anymore. He struggles to do simple tasks like reading the time and turning on the T.V. We have tired writing simple instructions for the T.V but he cant understand it. 

Over the past 5 - 10 years my dad has been progressing with the PD a lot and is putting strain on my mum. I am really worried about my mum because it is clearly hard for her to cope with looking after him as well as keeping a job as a psychologist. She is an amazing woman who has never given up and has struggled with juggling work and her husband. 

Dad finds it hard for other people to be in the house with other people he doesn't know as he likes his own space a lot of the time and finds it hard to interact with them. He doesn't get out much because any length of time out is wearing and gets incredibly tired a lot of the time. 

I have suggested getting respite for mum but she has said it is not so much getting away for her as it is wanting him to be back to the way he was. She finds it so sad too see him like that. When they meet up with friends they haven't sen in a long time she finds it so difficult and a bit embarrassing that old friends now see him suffering so much when they knew him before as being so independent and the most organised person in the group.

It has taken a lot out of us all If I am honest.

So even if there are any friendly words to say that there are others feeling so emotional about it that would be great thank you.

Sorry for the long rant. Been needing to let it all out for a while 

 

 


#2

Hi Caela,

Think we all need to have a rant at times. Hope it helped, even for a little while.

PD puts such a strain on everyone. I know it has on myself and my son ever since my partner was diagnosed. I would be lost without my son and I'm sure your mum feels the same way about you. We have written instructions up all over the place, it's not easy is it? 

All I can say is carry on being there for her, little things can make a massive difference. 


#3

Hi Caela,

             You've no reason to apologise as this is the right environment to get it off your chest. You and your Mum both sound amazing but your correct and think you both need support to cope caring for your father in these difficult times. I understand your mum may be reluctant to accept it but it will be for the best for you all as it will take it's toll. As MSL say's everyone feels the strain.

If you have a PD Nurse can you get her to contact your mum as they are really committed to helping all concerned. Also the Y.O.P.D workers at P'UK are the same as well and will do all they can if you contact them. They both will have experienced similar situations to yours and will be able to offer advice for the best outcome support wise.

I'm sorry to hear that the DBS didn't turn out as you hoped but it is a complex condition and different for us all. If your mum won't ask I suggest perhaps maybe yourself or other family members do it. Your mum may not initially be willing but will appreciate it in time as she will find it helps her recharge with the respite you want for her and I know your father would not want the situation to go on like this.

My best wishes for you all and remember there is always some one to listen and offer advice on this forum.

John