Hi, I’m Frances, and my husband was diagnosed in 2022 with PD, although the symptoms had already started in 2020.
He was given Madopar 100mg x 3 daily doses, but after a year had started feeling very anxious and overwhelmed, so the dose was put up to 100mg and 50 mg x 3 daily doses.
Since the beginning of December 2024 he was getting terrible episodes of anxiety, early in the morning, feeling he couldn’t breathe and couldn’t get into a comfortable position. This has been steadily worsening - the nurses gave him an extra dose, but now it is also happening during the day. Finally we went to the GP and I asked for something to calm him down and was given Diazepam. He takes that sometimes and also two paracetamols which seems to help a little.
It’s as though the medication isn’t working at times. He has the rigid type of PD, so no tremors, but he goes through a really terrible time - says he throbs all over and it’s as if there was a war going on inside!
Any help, advice or suggestions welcome!! I am so distressed I don’t know how to help him!
Many thanks
Hello Frances … Sorry to hear you are understandably anxious. Why not give the helpline here a ring. 0808 800 0303
I also have Parkinson’s & am on Co-careldopa. 2 pills 3 times a day. I was on Madopar but I didn’t get on with it so I stopped.
You don’t say how old your husband is or if he is suffering from any other conditions. He may be on drugs that don’t get on well together.
But do give the helpline a ring & speak to one of the Parkinson’s nurses here. I spoke to them in the early days & found them a great help.
Best of luck.
Steve2
Thank you Steve, yes I will ring the nurses. My husband will be 80 next month and he had prostate cancer 6 years ago. Only takes Tamsulosin apart from Madopar.
Have you contacted his neurologist? The neurologist may have a view on his symptoms and appropriate medication.
Regards
Doug.
Hi Doug,
Thank you, I phoned the number Steve suggested and spoke to a nurse who recommended talking to my husband’s neurologist to see if the doses can be more frequent to avoid the big drops he has.
We are seeing his NHS Parkinson’s nurses on 11th Feb, in the meantime he was given Madopar dispersible to help during the night and he has to hand Paracetamols and Diazepam if things get too bad! Every little helps, and we hope that the medication will be adjusted to his needs, as now he doesn’t want to go out because he is afraid he will get those severe internal tremors and get stuck!
Thanks for your concern,
Frances
Does he have reviews with his neurologist?
Doug
Hi Doug,
Since he was diagnosed in July 2022, he has seen the neurologist (consultant) three times to date and the nurses, once. At first the medication did wonders! But then a year later, we went in a trip and things started to go haywire. The doc upped his medication and checked him again three months later. He seemed a bit better… since December last year he had a big dip, we feel very much to do with in/off symptoms, but with high levels of anxiety, internal tremors and restlessness. We have an appointment on the 11th February with the nurses, and I am hoping they will give him his doses more frequently.
I have been wondering whether it is better to phone the nurses or go direct to the consultant?
Thank you for your concern,
Frances
Hi Frances
I do not get internal tremors but my Father, who also had Parkinson’s Disease did. It must be an unnerving feeling.
If his situation is/has declined, I would opt for contact with his neurologist to consider prescribing different medications.
Take care
Doug
Hello Douglas … I had a technician do an ultra sound on my bladder. He told me I had an internal tremor. Did I know ? … I told him I had Parkinson’s. It is something I wasn’t aware of until he pointed it out.
Best wishes
Steve2
Thank you all for your replies and comments. Fast forward the PD nurse prescribed Opicapone, which he has been taking for two weeks. This has been a real help. His anxiety episodes have reduced to almost nothing, as have the internal tremors. He is sleeping much better now and not roaming around the house at all hours of the night with all the lights on.
So far he has not had any signs of dyskenesia, or barely minimum when falling asleep.
My concern now is he was and still does get confused with time and clock reading, and recently has had feelings that there are more people in the house, or that he is not in his house. Anyone had experience with this?
Thanks again for your supportive comments! Yes to breathing and walking and getting distracted - it all really helps. Learning slowly…
For me a neuro-psychiatrist added to my team was a game changer for my anxiety. Best wishes as i would say my anxiety was my worst symptom
Frances hi, yes I have had experience of my husband getting confused with time and clock reading, it was the start of his hallucinations and it sounds as if you are living with a decline in perceptions and some hallucinations, your health care team should be able to help to see if there are any changes to medication that will help. We lived happily with his hallucinations and found a workaround for time that involved more conversations about daily routines, trying not to sleep too much during the day and get a good night is important but not always possible.
Take good care of yourself through all this and have as much fun and joy as possible.
Thank you, Jo, so much for taking the time to respond to my question!
Yes! It very much sounds like what happened to your husband. We are also trying to make light of it and I will try setting the alarm for his first medication so he doesn’t stay up half the night trying to fathom out the clock!
He has had sort of flashing images as a type of hallucination and also asks me every so often if there are more people on the house, so I guess this is all part of the same thing. I say, maybe angels!
My daughter is in the middle of cancer treatment, lives in Spain and I would really like to go and help her for a couple of weeks. However, as my husband is and gets confused, I cannot leave him. Trying to work out what to do that would be acceptable for him.
Anyway, do so appreciate your comments!! Frances
Frances hi, that is a tough situation you are in with your family at the moment, yes your husband needs you here but you need to get over to Spain and see your daughter. I was in a similar situation at about the same stage when my mother had surgery for breast cancer, my husband went into respite care and I went to see my mother through her recovery, it was very hard and not a perfect solution, I did my best for us all and failed everyone in some ways but we got through it. Have a look at helping your daughter with her fare to come and visit as soon as possible, when she is on the road to recovery but maybe still needs her mum, you will certainly find it easier to have them both under one roof to care for rather than leaving one to be with the other, very, very hard choices and not to be envied, my heart goes out to you. I hope you both enjoy a calmer night, stay safe.
Thank you again, Jo, for your reassurance and care!
Really good night! Even though my daughter has had terrible reaction to the chemo and all I want is to get there! We are thinking of going together. I think my husband can just about manage that, we would be together and he is willing to do what could be helpful. Respite care might make him more confused, don’t know if I want to risk that just yet. Hopefully we can make some good decisions today…
Thank you again!
Frances it would be wonderful if you could go over to see your daughter with your husband, he can, of course, be useful as seeing her dad will be a great lift, we are all stronger together when it’s at all possible. He will be much better there with you and it will build lovely memories for you all, you might be able to go for longer and make it a happy break rather than a rushed trip, I hope that you can enjoy good nights dreaming about it!
You are right about respite care being iffy for anyone and not to be used before it’s necessary, you sensible woman!
Thank you Jo for your encouraging words!
We are off on Tuesday to stay with my daughter for 12 days - not long, but I didn’t want to make it too long in case my husband found it too stressful, as that is one of the things that he struggles with - anxiety!!
So far he seems fairly calm. Though nights are getting dodgy!
How long has your husband had Parkinson’s? How is he? How are you coping?
Many thanks again, you have been a great support!