Carer New to Forum

Hi - I am new to the forum - my husband of 22 years has had PD for the past 4 years -
he recently underwent a back operation - and ever since he came out of hospital life has been hell to say the least. His mental condition is unbearable at times and it is really causing stress on our marriage - he is paranoid that I am having an affair with someone and no matter what is said, he just will not get it out of his head. I really think he will end up being sectioned soon and I just don’t know what more I can do to help.
Has anyone else gone through something similar please.

We’re very sorry to hear this, Mandy. We would encourage you to call our helpline at 0808 800 0303 and speak with our friendly and knowledgeable advisers, as they can point you toward local resources that can help. The helpline is free and confidential and you needn’t be a person with Parkinson’s to contact them. They are happy to assist in cases just like this.
All our best wishes,
Moderation Team

Hi Jason
Many thanks - we (both of us) did indeed phone the help line yesterday - they were understanding and are going to try and refer us to a local PD Nurse for more support.
We had a phone consultation last week Tuesday 8.6.21 with his consultant who is changing his medication however, i have just been to the Dr’s today only to be told that they have received nothing from his consultant - so I have now just chased the consultants secretary only to be told that the Consultant has issued the letter but not signed it off yet, together with many other peoples letters. !!! This is so hard trying to deal with ‘everything’ whilst being accused all the time.

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Hi…my husband saw his consultant 6 weeks ago. He had not bern seen for over 2yrs… I fought to get him a face to face appt…I took advise from the PDUK nurse…
Anyway he saw a consulatant 6 wks ago…his PD has deteriated greatly in the last 2 yrs…Consultant said he needed to increase my husbands medication. He has been on the lowest dose of sinemet since his diagnoisis 6 yrs ago…we asked when the increase would happen…the consultant said he would get a letter typed to the GP that day with a copy coming to us…
Well we are still waiting. We have rang the consultants secretary 4 times every time the voicemail came on… and finally last Thursday we emailed and she responded…to say the letter was typed and had been sat in a pile just waiting for a signature from the consultant for 6 weeks…in the mean time my husbands condition continues to get worse…so it seems to be normal for this to happen.
What makes me angry is that it may be “just a signature” to them but to people suffering with PD it is their lives that suffer…do these NHS consultants ever think of it like that? Or are we just a name to them?

Hi Babesbrown - thank you for responding to my post - from the comments within your post it appears to me that there must be hundreds/thousands of people with PD who are deteriorating whilst they ‘wait for their consultant’ to sign off letters. Do they not fully understand that the ‘carers’ are also suffering and deteriorating. I sincerely hope we are not ‘just a name’ to them…

Quick update - just received phone call from our GP saying they have today received the letter from the Consultant and his meds should be available by the end of today -
Babesbrown - it may well be worth going down the same line as I did yesterday by visiting in person the GP surgery and explaining in great detail the difficulties that I was suffering which are becoming unbearable (to the Receptionist) at the end of which I again broke down in tears. She then said that she would also try to contact the Consultant or her Secretary to emphasise how urgent the matter had become. It seems to have worked for me.

Hi MandyB,
Sorry to hear about your experience, I wonder if he was given morphine? My husband had a fall a couple of years ago and was given morphine ( although didn’t need it!) and he was a changed person after that. The following day he didn’t recognise me and the doctor said that it affected people with parkinsons negatively. It must be very distressing. My husband went through a paranoid period last year whilst having a psychotic episode and it was awful. I would suggest making sure he drinks plenty to try and flush out any toxins as well making sure he’s hydrated. Just a simple suggestion but it won’t harm him. I found support pretty awful and felt I wasn’t believed. I would talk to your GP and say what is going on and see if he can be treated for the paranoia e.g. queritapine which my husband was given and really helped. Hopefully it will pass for you both.
Regards Meg