I'm thinking about doing some sort of video with clips of my Dad and the day to day struggles, like having a conversation with him & watching him having help try to stand up from his chair etc.
I would be doing this in efforts to give people an insight into the real PSP (I know every case is different but I don't feel there is a realistic portrayal in easy access).
I know it will be hard to watch but would people support this?
Written by
HannahDaykin
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Thank you Hannah for your recent blog and for your willingness to do a video of your dad's illness. I think this would be helpful to people who have PSP and also to their carers. God bless and good luck with all that you are doing.
As long as your dad is happy with it,that would be a great idea. We dont have many videos of people living with PSP and for those who have never come into contact with the condition it can be hard to describe.
This would be a great way of raising awareness, so I'd say go for it!
Hannah, you are doing such a great job raising awareness of this awful illness, and as long as your dad understands why you are making a video of the condition and is happy with it, then I would say "go for it". We need to make more people aware of this horrible, horrible illness and your efforts are certainly applauded by all of us who are affected by it. You are much younger than most of us on here and your energy is apparent in the way you are dealing with this. Long may you continue in your efforts and love and best wishes to your dad. Keep us posted of further progress on the video.
Have a chat with your Dad and the rest of the family; be really clear what you are going to do and whether or not there are going to be any limitations on what you do or do not film and then go for it. I am sure it will be useful to raise awareness and to inform families of the newly diagnosed of what may lie ahead. Try and include some of the good times too. Let us know what happens and if we can help in any way.
I agree with this last comment. From a moral and ethical perspective it would be important for your father to be consulted and if he is able to give his consent -to get his permission first. It is also important to discuss the matter with the rest of your family to allow them to express their feelings about the filming and also to be clear about what is and what is not to be filmed. Above all your fathers dignity and personal wishs should be protected and respected.
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