Hi all. Not sure what to write really but need to try something. My dad was diagnosed with PD about 4 years ago. His symptoms were mainly tremor and struggling to eat. Dad has taken this diagnosis in his stride as much as possible. He is fairly active plays golf and goes for walks, etc. I haven’t seen him since February and obviously not much at all during covid. I went to lunch with him yesterday and was really shocked, his arms were failing around a lot and his face looked different. His memory has been getting worse for quite sometime which is fine we can deal with that. My stepmom looks after dad really well, I got quite upset yesterday as I was just so shocked in the deterioration (obviously in private not in front of dad). When we walked down the road dads arm was stiff and his hand looked starve his fingers were stiff. I was worried about him tripping and loosing his balance. My stepmom said she hadn’t seen dad like that before at all . I wonder if this is a one off or we are moving into a new phase of the disease? I want to be able to deal with my emotions and not worry my dad, his biggest fear is loosing independence thanks
Hi Bexx, and welcome to our community forum. We’re sorry to hear things have been difficult for your dad of late, but we are glad to hear he is active and managing his life around it. Obviously the best way to keep up with how he is progressing is to check in with his medical team, specifically his Parkinson’s attendants, but we also have some resources on our website here. In addition to this we have a free and confidential helpline, at 0808 800 0303, staffed with kind and knowledgeable advisers who are willing to answer questions for family as well as PWP. Please don’t hesitate to give them a call.
Again, welcome, and best wishes to you and your family,
Jason
Moderation Team
Hello Bexx
I’ve been trying to think what I can say to you that will help but emotions are such a difficult and personal thing. I have Parkinson’s myself and in an odd way I have the easy part of the deal. I do what I can to mitigate the challenges it brings but ultimately my unknown future will be what it will and all I an do is carry on with my life as best I can, same as your dad seems to be doing. His biggest fear may be losing his independence but the fear part is I think in many (and I am generalising here of course) a fear of the unknown and as in most change is slow, chances are he will adjust and adapt as his Parkinson’s progresses. We don’t have a choice. For whatever reason fate has dealt this card and it is a part of each of our lives. Not an easy thing to live with but arguably far harder is to watch someone you care about live with the changes and challenges it brings. I say watch because you can be as involved as you like in the decisions, the arrangements and anything else that enables the person with Parkinson’s to have the best quality of life at every stage, but what you can’t do is take away the Parkinson’s and what it does to the person you care about. This inevitably brings with it a whole range of deeply felt and entirely legitimate emotions. I don’t know if what you saw on the day you met your Dad was just a bad day or the start of a change. I can understand the shock you felt having not seen him for several weeks. What I can say is that much of what you describe could be seen as entirely in keeping with common symptoms of Parkinson’s - the flailing arms you noticed at lunch could be involuntary movements caused by a side effect of his medication for example, his face looking different may be the mask like, expressionless face many of us develop, we can also blink less than normal which can give us a strange expression, stiff limbs are common and many of us lose the natural arm swing with movement. None of that helps with your main concern which is what you call ‘managing your emotions because you don’t want to worry your dad.’ I expect he is equally concerned that he doesn’t worry you. I don’t pretend to be expert but depending on the sort of relationship you and your dad have maybe one of these will help you get started (in no particular order)
Once the shock of seeing him has reduced and when you’re feeling calm talk to him directly explaining your concerns for him and ensuring he knows you’re there for him. It doesn’t have to be heavy just maybe start to open the door to honest communication on his Parkinson’s and its impact on all the family. If you can’t say it write it.
Can you enlist your stepmother’s support. She might well appreciate a more open understanding of his Parkinson’s
Is there another family member or friend you can lean on?
For yourself there are several avenues you can try, there’s always the forum of course, perhaps the helpline can help, your local Parkinson’s support group, various Internet support groups and of course some kind of counselling.
I’m not sure how much use what I’ve written will be and it is only my view but I hope it has helped a little. Finally I would say don’t be too hard on yourself you feel what you feel and you deal with it as you do. Your dad may have Parkinson’s but he is still first and foremost your dad. Be there for him but let him be your dad too. Parkinson’s takes away much don’t deny him the opportunity to be there for you by keeping too tight a rein on your emotions. There can be strength in honest emotion too.
I do hope you understand what I’m trying to say, I’m not sure I’ve been very clear but that’s for you to decide.
Best wishes
Tot
I wonder whether your dad was reacting to stress, even the positive stress of your visit. You say you hadn’t visited him for a while. I have PD and I am often frustrated by how badly I react to any kind of stress or excitement. My symptoms become 10x as bad.
Thank you Jason, it’s comforting to have a place to ‘talk’ for me to. Thanks for the helpline number I will save this in my phone. Beccy
Hi Tot,
Thank you for writing back to me, everything you say makes sense, it’s really helpful to hear from someone with Parkinson’s too, before dad always struggled to talk about emotions and feelings, the way he was brought up I think, but since his diagnosis he seems to get much more emotional and cry quite a bit too. I’ve always know I’m loved deeply even if he doesn’t say it, but one thing this disease has done is make dad connect more with them. Dad is the first person I’ve actually known with Parkinson’s and it is just so heartbreaking to see him struggling like this. I really value your advice and in particular note about letting him still be my dad, that is really important.
I have 2 sisters as well, 1 lives nearer dad and 1 lives in Canada. I feel it’s worse for her being so far away, and we’ve encouraged her to come back for a visit soon, she obviously hasn’t been back for years due to the pandemic.
I saw my dad again before I came back home and he seemed a little better, so I’m wondering if it was the excitement / excited stress of seeing me and my daughter. He was so happy to have lunch and chat, and I’ve just got a new job so he was very proud of me for that too.
I’m going to make the effort to visit once a month, and we do video call every 2 weeks (dad and sisters) so I need to make sure that happens too.
Reaching out was difficult, but I’m glad I did, what a lovely group this is.
Thanks again, and do take care too,
Beccy
Hi Jane,
Thanks I do think it may have been the excited stress, and hopefully if I can visit more often this was be a bit more manageable for dad and me.
Thanks for taking the time to reply.
Take care,
Beccy
Hello Bexx
I’m so glad you were able to grasp what I was trying to say in my post and that you got something positive from it. As you said, reaching out can be hard but you were brave enough to do that this time and the forum will be here should you need in the future and don’t forget your own experiences may be valuable to someone else, so don’t be afraid to reply to a post yourself if as and when you feel ready to.
Tot