My husband was formally diagnosed with PD in June 2024 - we elected to go to a private Neurologist because our NHS GP who saw him in May 2023 diagnosed ‘Benign essential tremor’ and would not refer to a neurologist. Private consultant effectively passed OH ‘back’ to our GP and NHS - OH has been referred to the Specialist Parkinson Team - but the waiting time before initial interview (by Zoom) is 4 months so still waiting on that.
OH was prescribed co-caroldopa, initial regimen was 1 x 12.5mg/50 3 times a day. That was for 1 month, and then the medication is being titrated up by 1 tablet a day every week. Currently he is on 2 x 12.5/50 in the morning then 3 x 12.5/50 early afternoon and early evening.
From my POV I don’t think there has been any change in his symptoms. Basically he has resting/relaxed tremor in both forearms and hands - quite pronounced. The tremor stops with active movement, but is very present when still (not when asleep). Most recently he has actually become more anxious and restless such that he can’t stay in bed in the morning anymore - he just needs to get up and move around.
We are in a bit of a vacuum with respect to knowledge and feedback opportunities given the Parkinson’s Specialist Team has such a waiting time. Surely we should have seen some sort of a change/reduction in the tremors with the meds?
Hi Kernow,
We just wanted to take a moment and welcome you to our community forum, and make sure you’re aware of the resources we can provide. In addition to the feedback you’re sure to receive from our members, we have a free and confidential helpline staffed with highly knowledgable advisors who could likely provide some information with regard to your husband’s medications and reactions to them. They’re on 0808 800 0303 and always happy to help. And our website is kept up to date with news, articles, and archived forum discussions can be found there with a simple search. Do have a look at Parkinsons.org.uk when you can.
With our warmest welcome,
Jason
Forum Moderator
When I started co-careldopa 3 or so years ago, I think it took at least 12 months to find the correct medication and the correct dosage. I think most people here have experienced the same thing.
It may just be that your husband needs his dosage increased and maybe another drug added to his regime.
Maybe worth a chat with the PD medical team or better still, the Dr that gave the initial prescription. Be persistent.
Cheers
D
Hi Kernow,
I’m sorry to hear that you have had to go through so much hassle with this situation, it is really unacceptable.
I find that exercise really does help me enormously in controlling my tremors.
I find, like your husband, that if I do not exercise my tremors are a lot more pronounced.
Perhaps if your husband could set up an exercise system it would help enormously.
I usually go to gym three times a week and cycle twice or the other way around.
However I find that even if I exercise only three times a week, for an hour each time, it does help.
And exercise can be walking, running, sit ups basically anything that get your heart rate up.
I hope that helps a bit.
Hi. Sorry you have been left in limbo like this. It is not an acceptable situation. What part of the UK do you live in?
Hi Douglas - we live in West Cornwall, so our NHS is Devon, Cornwall and the Isles of Scilly.
OH has literally just had the initial telephone consult appt letter through, appt allocated is for 31st October, which is, of course, the ONLY day we are not here… He has rung and left a message asking for a change.
We have been waiting on the PD team for the initial appt (telephone) it has just been allocated for 31st Oct, which, of course is the only date we cannot make… TBH the original neurologist he saw for the diagnosis is not a Specialist in PD and was not particularly helpful when I did send some questions to him.