Rapid decline


#1

I am getting very worried with how quickly my partner’s Parkinson’s seems to be progressing. He was diagnosed in 2014 and is taking 125mg of Madopar five times a day and 6mg of Repinex a day. This hasn’t been altered for years. He displays all the symptoms of dementia but the most recent MRI scan shows no change since the last in 2015, so his neurology has dismissed it. He did get my partner to do a memory test but then said he was taking too long to complete it and we were sent off so he could see his next patient.

He constantly asks the same questions, personal hygiene is virtually non existent, forgets words, dates and times. Last night he got up 6 times, each time convinced it was the next day. Verbal aggression then follows as everything is me being nasty or doing it to be awkward.
I can hardly make out what he says now, his face muscles are even more frozen and everything comes out slurred.
And now the hallucinations have started. Mainly people, a tramp sitting and smoking in the neighbour’s garden, twitchers standing at our front gate, a man with a clipboard living in a rubble bag, an archaeology dig - the list is endless.
There is 14 years difference between us and I feel selfish wondering how to cope with how this horrendous disease is affecting him. Every day seems worse.

GP appointments are rarer than hen’s teeth, the Parkinson’s nurse should see him every 6 months and it is often over a year. The last time we saw her she was so patronising, even suggesting we could do with counselling as we obviously saw things very differently.

Can anyone say they face anything similar as I am feeling completely alone and very scared of what the future holds.


#2

Hi Luna,
Sorry to hear about your partner’s decline and the worry this has caused. We’re sure our forum members will be along soon with some great advice, if not someone from the Parkinson’s UK moderation team will respond to you soon.
Meanwhile, you may find the information on our caring section useful. It includes a carers guide with some practical tips and advice. Our Helpline advisers will also be happy to chat to you and offer advice and support if you prefer to talk to someone. You can call them on 0808 800 0303.

Best wishes,
Edwina
Moderation Team


#3

Hi @luna,

I’m really sorry that you’ve coping with all of your husband’s health condition on your own.

It’s completely understandable why you feel alone, however, we have a really supportive community here on the forum so hopefully you won’t feel like this for much longer. It’s really unfortunate that your husband hasn’t seen his Parkinson’s nurse in over a year, this can’t be helpful and at times, frustrating I can imagine. I see that one of our moderators has recommended that you call our helpline which I agree with.

One of our advisers can arrange for a Parkinson’s nurse to contact you within 24 hours and they may need to review your husband’s medication. Please do take the time to look at the carers section on our website including information on the kind of support that is available to you and your husband as this will be incredibly helpful to you.

Best wishes,
Reah