Newbie whose Dad has PD


#1
Hello Everyone

I have joined to find out more about PD so I can help and support my dad who was diagnosed with PD 3 years ago after a barrage of tests for various cancers. From what he shared with us it appeared to be something wrong with his digestion/colon/uninary system but he has since revealed that he secretly believed he was starting the symptoms of Alzheimers so he must have had other symptoms. I'm not sure what sort he has - he doesn't have shakes but is very stiff and very slow. Originally they thought he had Multiple Systems Atrophy but they have backtracked on that a bit now.

To be honest I have been in a bit of denial about it, choosing to look away when he takes his multitude of tablets, or cheerfully help him when he can't do the zip of his jacket up but inside it's tearing me apart. I want my strong, able dad back, not the stooped old man he suddenly started to turn into about 6 years ago. I want him to be able to pick my little girl up, play football with her. I want him to travel and enjoy his retirement. This cruel disease had taken so much away from him.

He is trying to take control and goes to the gym to exercise every day and is always at the docs trying to control his symptoms. Him and my mum have been on seperate trips to NZ and Australia in the last year and are off to the states in a couple of months but I can't help feeling it's more because he feels he should do stuff because one day he won't be able. Almost forced if that makes sense. And my poor mum is knackered from all the travel :laughing:

To put things in context, I am 40 and my dad is 67 so it's not like we shouldn't be prepared for some sort of ill health but why PD?

Sorry, this sounds a bit self indulgent.

H

#2
Hi Halle,

Welcome to the forum!

Do you know what tablets your father is on? Do they help with his rigidity and slowness?

I am glad to see he is proactive by going to the gym. And good on him (but pity on your mum) for the travel :smile:

You're entitled to be self-indulgent (your words not mine :grin: ). By coming here it shows you really do care and there is a load of helpful advice around the traps here.

When is his next trip to the PD Nurse/neuro? Does you mum feel his meds need come calibration?

Best wishes,
rico

#3
keep talking, keep talking.
Your dad is still in there and is well aware of your angst.
He is still here , make the most of it and love him. Your pain is crippling and I know of no other way of dealing with it except by sharing it.

mrs.t.

#4
Thanks for your replies guys.

I am seeing him this weekend and will find out about his meds. I am also not sure if he has a PD nurse but I will encourage him to look into this as many people on this forum have had valuable help and advice from theirs.

Reading people's posts on here has also made me realise that I need to take more of a role as well now, if only to relieve my mum. I have been a little selfish in the last couple of years - new baby, redundancy, finding a new job, working full time. I guess they are always on holiday as well though :laughing:
He is still always here for me though and next week they are both picking up my daughter from nursery because my partner is away and taking her on the nursery trip to the farm the following day. I think things like this make him feel normal and useful again.

I guess he is very much the same person just with a body that is getting slower and stiffer :disappointed:

Hx

#5
Hi Halle,

From what I have read on here PD nurses are invaluable. When I asked if they were available here in Aus the neuros replied "no". The PD nurses seem to be the ones you call or see in-between neuro visits, here it seems to be the GP (who normally isn't up to speed with PD, though ours is damn good as he told us he thinks mum has PD b/c of this, this and this and then proceeded to do all the textbook tests).

But a PD nurse would be a treasure!

"I think things like this make him feel normal and useful again."
Kids are more precious than gold. My 2 year old adores her nonna and the newborn stop crying in my mum's arms. Seems like this is keeping my mum going inbetween the problems she's facing.

Good luck this weekend. Maybe even drop your parents the helpline number above.

Best wishes,
rico