Parkinson's and narcolepsy


#1

My Dad is 87 and has Parkinson’s. He was also diagnosed 60 years ago with narcolepsy and has taken anphetamines daily since. He has been unwell since February and was admitted to hospital 4 weeks ago with pneumonia. The hospital has discharged him and he has gone to a nursing home as Mum can’t look after him and I live 200 miles away. He still has fluid on both lungs and his heart has been damaged by the infection. 2 weeks ago the doctor told us dad had days rather than weeks left and at the time we thought so too. However, he has got stronger hence being discharged because they said there was nothing more they could do for him.
My concern is that he is now seeing things like birds that aren’t there and saying strange things and believing them to be true when they aren’t. It’s like he is developing dementia.
I don’t know what medication he takes for his Parkinson’s, but I do know that he is no longer being given anphetamines.
Sorry, I know I’m rambling but I’m trying to find out whether stopping a medicine he has taken for 60 years would affect his Parkinson’s and make him behave so out of character? Surely the narcolepsy medication would have been taken into account when prescribing for his Parkinson’s. Should his Parkinson’s medication now be adjusted?
Apologies - this is my first post, sorry it is so long…


#2

Hi CeeBee,

Thank you for your query.

We’re confident that one of our forum members will offer their support and advice in response to your comment. However, if not, someone from the Parkinson’s UK moderation team will respond to you as soon as possible.

Please don’t hesitate to contact our helpline service on 0808 800 0303 to speak to a Parkinson’s UK adviser.

Best wishes,

Ilona.


#3

At 87 it may not be the Parkinson’s causing the dementia, just age related.

Ask for a referral to a memory clinic.

As for stopping a medication only a GP/pharmacist/consultant can answer that, not us on the forum.


#4

Thank you for your reply. My Dad’s behaviour has only changed and become a concern since he was admitted to hospital with pneumonia 4 weeks ago.
I guess I didn’t word my post very well.
What I would like to know is if there are any other members who had narcolepsy prior to Parkinson’s and how their needs have been met getting medication right. It took a while to get it right for my Dad because of the medicines working against each other.
My Mum doesn’t like to make a fuss so she hasn’t asked anyone to check Dads medication and whether stopping one will mean the other needs adjusting.
I regret putting Dads age on the post :disappointed_relieved:


#5

Hi @CeeBee,

First of all, I’m really sorry to hear about your Dad’s deteriorating health, I can appreciate how distressing this must be for you and your family. With regard to the change in your Dad’s medication; I agree with benji’s advice, the best thing to do would be to consult with his GP or a Parkinson’s nurse about this.

You can also contact our helpline regarding the change in your Dad’s behaviour, our advisers may be able to offer more insight into this and put you in contact with a Parkinson’s specialist.

Please give them a call on 0808 800 0303 and do keep us posted on your Dad’s progress.

Best wishes,
Reah


#6

I too had a diagnosis of familial narcolepsy many years before diagnosis of PD. There is a strong correlation between sleep disorder and PD. In fact, a current research supposition is that the sleep-disorder maybe be related to or even cause alpha-synuclean misfolding and build up of Lewy bodies that leads to Cell death and progression of PD. Sorry, that was a mouthful.
The problem for you and your family is that so very little is understood about PD let alone PD and its co-mornodities, so much for researchers to learn. Rx titration is guesswork for all concerned. Co-morbidities still seem to confuse more than reveal.

As someone who has had a PD diagnosis for 15 years, I feel I can make one strong recommendation: find a PD facility that uses an intergrative approach to Care. What I mean by that is that your father will do best if he has several specialists of different aspects of his PD who talk to him, his family and, most importantly, to each other. PD is such an individual experience. It will take a team to tease out the details of your father’s own unique version the the disease and how best to help him.


#7

Ps. I posted earlier suggesting you find an integrative PD facility for a team approach to care. For example, There should be a sleep specialist on staff who can tease out how much of his narcolepsy is in fact PD and who can answer your question about the sudden cessation of anphetamines.
And there should also be a PD swallowing specialist. You probably already know this, but pneumonia may be a sign that he is aspirating his food, which is a common swallowing issue with PD. A specialist can show you if and how you can make his food safer and give him exercises to strengthen muscles for swallowing.

Very best of luck!


#8

In an ideal world, Chrystalgo, there would be all sorts of specialists involved from diagnosis and all along the years after. Sadly, that is NOT the case in many areas of the UK.


#9

Right. Sorry. In the US, where I’m from, it seems the funding goes mostly to new drugs that are only marginally helpful. Europe seems more interested in targeting a cure. But in neither does there seem to be enough value given to helping folks live well with Parkinson’s now. I don’t have data to back this up, just a general impression.

Apologies for negativity. The point is this forum I think is pretty invaluable.