Nurse

I did some reading last night on how people suffering from Parkinsons disease (PD) can suffer from hallucinations, delusions or illusions, trying to get a handle on if the issues my dad is experiencing are due to the disease or something else.

The article says that between 20 and 40 percent of PD sufferers can experience these things, ranging from seeing animals around the house, to believing they are in different places or with different people. Some of the things mentioned do ring true with my father, him thinking that the house where he has lived for 30 years isn’t really the same place. That it is different somehow, with more rooms and more people and if he looks out of the window at other houses across the street, they don’t look real either, like a painting or a piece of scenery (his words).

However, he slept ok last night and there were only a few questions this morning compared to normal. Strange how it just switched to that compared to the previous weeks antics (which he doesn’t seem to remember much about when I ask him now).

I went and met with their PD nurse earlier today, thinking that my input would be useful. Also, that I could try to remember things for my mum as we were blasted with lots of information all at once by the quick-speaking Polish nurse.

My mum has been keeping the nurse up to date via email of all of the issues my dad has had recently, so she wasn’t coming in cold. She almost immediately agreed to prescribe some sort of anti-psychotic meds to help with him seeing things that aren’t there and believing things that aren’t real. She mentioned the word “dementia” which worried my dad, but even PD itself is a form of dementia and there are different types and impacts. So we shall wait to see how he gets on in the coming weeks, hopefully returning to (a more) normal existence.

The nurse did some physical checks on him, giving him some pointers about safety when going up and down the stairs when she noticed him not taking time or too much care. People with PD can often freeze when walking because their brain is taking additional time to cope with a kerb or an unsure surface. She noticed him freeze slightly at the top of the stairs, so was gently telling him off for not using the rail to help himself.

He has been losing weight for quite some time now and is just under 8 stone. So she also tried to tell him to make sure he eats and drinks more, telling my mum to load things with double cream to get the calories in to fatten him up. He doesn’t seem to have much appetite and has had constipation, another common side-effect of PD. Because of the problems of not eating much and therefore not going to the toilet often, she advised that this may cause his PD meds to not work effectively, so it is important to look into fixing that.

The meds he takes (Sinemet) to help improve his movement increases dopamine, which can in turn cause the delusions and strange experiences he has been having. Perhaps if his medication was in his system for longer due to it not being passed through normally, his dopamine was off the charts, not through any fault of his own.

He will have an appointment with the GP to discuss this, perhaps taking something to help keep things moving. And by that time, the GP should have had a referral from the neurology team to prescribe the anti-psychotic meds too.

She also stressed the importance of keeping active, maintaining a hobby or getting out and meeting with other people. She said that it is easy for the body to become conditioned to not doing anything, so when you try, it becomes exhausting. She was told he used to paint (and be an art teacher) so she was trying to get him to do something along those lines, even if it is just for a 5 minutes a week to begin with, increasing it as he goes on.

It struck a chord with me too as I don’t really have many interests outside of work and doing family stuff. Its too easy to just settle for work, run, cook and then doom scroll for the rest of the evening. All whilst kicking myself that I have no time or energy to do something more interesting.

The PD nurse also stressed how important it is for mum to ensure she doesn’t burn out from the care she gives. Even if it is for 30 mins for her to relax or go for a walk with a friend. Not that my dad can’t be on his own yet, but I think she worries she needs to be there all the time, especially since his recent episodes of confusion. I think we will need to make sure she takes the opportunity to do these things, or to take dad out for a walk/coffee as much as we can to give her a rest.

Luckily, the PD nurse will be summarising everything in an email and report. She was lovely, but also very busy, covering all PD patients in our city on her own! Hopefully, nothing will get missed and we didn’t misunderstand anything she said today.