Withdrawing as a sympton of PD

Hi,

My dad was diagnosed 18 months ago and has withdrawn a lot. Whilst he seems reasonably cheerful, he doesn’t intiate any conversations and it’s difficult to elicit more than one word answers from him. His faculties are all working but he doesn’t seem connected or enaged with the family or with the world. Has anyone noticed this a symptom of Parkinson’s?

Hello, the answer to your question is probably but not necessarily in the way you imply. Àpathy is a well known factor in Parkinson’s and this may be what is affecting your father. Fatigue is another, things take longer or you have to find different ways to do things, you’re almost waiting for it to trip you up, figuratively speaking. There are some 40 odd non motor symptoms, including anxiety and depression - he may seem cheerful but is he really? It can affect your cognition, I for eg often can’t find the word I want so have to go the scenic route…in a nutshell Parkinson’s is a hugely complex condition and there are any number of reasons for what is happening and does he recognise it in himself, have you spoken about it. I appreciate this is as clear as mud in terms of being useful to you but the reality is that Parkinson’s is a very untidy condition with tentacles reaching out in all directions. If it is causing you concern I think you’re best consulting with his medical team or alternatively the helpdesk for advice. I am sorry I can’t give a simple answer and hope that my words don’t cause undue worry. It is not easy for us who have it to always understand what is happening or why but I can tell you we all find a way to live with it perhaps this is just what he needs to do just now. I hope you find some explanation that satisfies you. Best wishes.

Hello Missy. I think I do this, some of the time and with some people. O ne doesn’t want to be always playing the ‘I’ve got parkinsons you know’ card and quietly withdrawing from a situation seems easy att first. Explaining how you feel and why something is bad today which wasn’t yesterday is too much trouble because it quite likely won’t be understood anyway. I don’t understand it myself so how can I explain it to someone else.

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Hi Missy
I believe this is a symptom of Parkinson’s as my husband is like this and so was my father who also had it. My husband was always a quiet man as he has hearing problems but seems a lot worse now. When I have questioned him about it he doesn’t realise how uncommunicative he has become. As long as your father is not depressed just keep encouraging him and make him join in family occasions! Not easy I know but then possibly we all talk too much anyway. This is a very weird illness and there are many things you will never understand. Good luck

Hi I recognise what you are saying, as my husband who has had PD 11years, struggles in family situations now, especially as his speaking voice is so quiet and has to almost shout to be heard. However, I feel that is how he is towards me. It seems as if what is going on for him is all he can cope with and doesn’t hold onto anything I may say is happening for me. He does try and he was a quiet, shy person before, but one of the things I feel annoyed about is when someone is speaking to him he does not look at them when he replies, or even when they are speaking to him!! I find it rude and say that to him. As one of the other respondents said, it is a messy, complicated business and there is nothing that it doesn’t affect. I still struggle massively in coping with living with aPWP.

It may be difficult but try to get involved with the local Parkinson’s support group, where you can get a lot of help. My wife got involved and got a lot of info while I was still working, and it wasn’t until a couple of years later when I finished work I then got a lot of help and friendships from the group.
I wish you luck.

I think you have explained well. In my experience with my husband, they do not seem aware of how they react to people. I also still struggle to cope with P.D. affecting our lives, can’t see that ever changing. He’s been diagnosed since 2011.

Hi Albert,
There isn’t a PD support group for just carers where I live, so have initiated one myself with help from the local co-ordinator. I live in Brighton so if anyone wants to come it is 29th August, 10.30 - 12, Al Campo London rd Brigton.
There is no getting away from the fact that PD is an all pervasive, complicated illness that really the medical profession hasn’t got a handle on and seems reluctant to invest in as far as I can see.
Meg

Hi Buffy,
I can sympathise as it doesn’t get better only progressivly worse unfortunately. I have initated a Carers suppport group where I live in Brighton as there wasn’t anything offered otherwise that didn’t involve the PWP!
Keep doing as much for yourself as possible, try and do as many normal things together too allowing for restrictions i.e. tiredness, toilet needs etc. It is hard and exhausting.
Meg