All my husbands symptoms have been returning one by one, he is on Madopar 50/12.5 3 times daily and 100/25 slow release at night bug it is like they have stopped working now, he is freezing? Stumbles, selling is mainly a shuffle but there are times that everything is normal though it is isn’t for long? Saw PD nurse just before Easter and they added dispensable Madopar 50mg twice a day
Had to go to A&E on Friday Morning as he said his legs were numb and then nerve endings jumpy ! They were very good with him, took blood test for electrolytes to make sure there was nothing wrong that was causing his decline, tests were fine but because his mobility was poor they wanted to admit him for a consultant and physio to take a look at him, this is where it all went wrong !
They got him into a ward and the Dr came round who said that she was speaking to the Parkinson’s Consultant and they were checking for any infections, the the frailty nurse came in and tried to get him to stand which was very difficult and walk which was even more difficult, the Consultant never came to see him at any point, Saturday morning the physio came in, they walked along the corridor and up and down stairs which was fine as he was having a good morning, on this basis they sent him home, when I asked why they said the physio wasn’t worried about anything but she didn’t see him on is off time when it’s really bad and since he came home the symptoms have come back
They also couldn’t get his meds right at all I asked them in the afternoon for his disposable Madopar to be given as that’s when he normally takes it but he didn’t get it at all, I so I had to inform them what times he took his meds and that opicapone and Madopar at night need to be taken an hour apart which they didn’t realise !
They did tell us that his appointment with his Nuero had been brought forward and she had fitted him in on the 20th June for a review? Hopefully a little increase in his meds will sort out these issues but his anxiety is off the scale at having to wait three weeks feeling like this and I have no idea how to cope with it all
Hi Mojo31. It sounds like both you and your husband have had an incredibly stressful few days. It’s great to hear that he was having a better day on Saturday, however I can completely understand both of your frustrations around the consultant not seeing your husband on the Friday when he was really struggling.
It sounds like you did a great job in communicating with the hospital to sort the timing of his medication out - it’s not always easy having to advocate for someone - a huge well done for that.
It’s really good to hear that his appointment with Neuro has been moved forward, although I can completely understand that 20th June still feels a way away for you both whilst you are feeling so stressed and anxious about the situation.
If you haven’t already, I’d recommend giving our helpline a call on 0808 800 0303. Our trained experts and specialist nurses are on hand anytime between 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays. They’ll be able to chat these things through with each of you in more detail.
Please also don’t forget about your own wellbeing - as you know, it can be incredibly upsetting and challenging caring for someone you love. In addition to our helpline (where we’d encourage you to speak to one of our experts about how you’re feeling), we also have information on supporting someone with Parkinson’s here.
Take care, and please do keep us all posted with how you are both getting on.
Hi Mojo31. I do hope your husband is a little better today and you get some fedback from your post.
My husband is also taking Modopar 50mg/12.5. 3 x day and the last few weeks his symptoms have been the same as your husbands with some days a little better than others. He had seen his Consultant only a week before and he was happy with him and didn’t change his meds.
2 weeks ago I was so worried I contacted 111 who send the paramedics. They gave him a thorough check over ecg etc. They put it down to low blood pressure. He gets very tired in the afternoon and will have a sleep on the bed but on waking he gets very confused and thinks it’s next day and can not comprehend it’s not whatever I say. Please can anyone give me any advice how I can handle this please.
My husband was diagnosed in April 2023 and in that time I must thank you. I don’t know what I would have done without all your posts.
Thank you for your reply
He is just the same but strangely enough he is better after he has had dinner though it doesn’t last all night
When he was in hospital they done all the usual BP checks, lying down standing up etc and it’s okay but he is on medication for it anyway !
My husband was diagnosed in May 23 and up until recently was doing well, it’s all so worrying and frustrating when you can’t seem to get anywhere
Maybe you should ask to see another consultant he founded like hid meds need a tweak too X
