Hello, I care for mum who has been diagnosed over 20 years.
Are there any others with similar experiences? I hate seeing mum when she’s ‘off.’ The poor mobility, staring into space, foggythinking. However, when the dopamine is working well, I also struggle as she becomes arguementative, has faulty logic, starts to eat more than usual(a problem cos she has a hiatus hernia), refuses to listen to reason.
It also seems that when she’s off, she forgets what happens when she’s on. When she’s on, she forgets what happened when she was off. Hope that all makes sense!
I have noticed similar changes with my hwp parkinsons symptoms. When he is off, his level of confusion increases markedly. When he is on, he is fine . I think it’s just a sign of the advancing symptoms and his particular drug regime and ongoing symptoms( 10 years post diagnosis) . It does put a strain on the care giver without doubt and I know what you will be going through. My hwp has ‘foggy’ memories of his behaviours when off, but is unable to alter them. They do vary of course and sometimes he responds well to assistance and reorientation to his surroundings. The only recourse we have is discussing the symptoms with the specialists ie parkinsons nurses and/or neurologist. In our case I don’t expect any medication changes but everyone is different. Seek all the help and support you can.
whn my meds sahave switched off everything ust becomes such san effort to do thst it really frustrates me and i cant be bothrred to dp anything, even siting at the pc desk is too much of an effort.
We are also here for you if you ever need someone to talk to or to listen to how you are feeling. You can speak to our trained advisers, including specialist Parkinson’s nurses on our free helpline: 0808 800 0303. They can provide information and advice to help with how you are feeling right now.
