I was diagnosed with Parkinsons in May 2020. After taking levodopa together with a variety of enzyme inhibitors, in particular entacapone, my symptoms were reasonably well controlled. My condition continued to deteriorate and my quality of life started to suffer as a consequence. Towards the end of 2022 I had developed problems with diarrhoea with all the limitations that brought with it. Following a colonoscopy, I was diagnosis with microscopic colitis. From the Mayo Clinic web page I found a reference which linked taking entacapone and having microscopic colitis. I passed this information on to my consultant who advised that I stopped taking entacapone and assess if this had any basis to it. The diarrhoea stopped almost immediately.
As an alternative I was prescribed opicapone which had only been recently approved by the NHS in Scotland. Sir Nicholas referred in the May 2023 podcast that the introduction of opicapone had made a dramatic difference to him and as your newsletter states ‘transformational effects on his symptoms’. I can concur directly with his view and for me taking opicapone has been a game changer. It had a very positive impact almost immediately. My movement, mobility, energy and enthusiasm for activity, in my case, walking and sea fishing from my boat have become, once more, achievable and enjoyable. More than eighteen months in, these improvements have largely been sustained. I would agree with Sir Nicholas that a whole programme, having a more detailed look at the impact of this drug, could benefit many more Parkinsons sufferers.
My brother developed early onset PD 15 almost 16 years ago. Found in the last 4 years that a treatment to address systemic oxidative stress and aggressive management of diet and levadopa to manage symptoms and also to maintain strength has been extremely positive. No progression of the disease 42 months (via PET). UPDRS-III scores are in single digits. Sometimes I think the medical community just expect deterioration.
Thank you for sharing this information…I will pass it on to my neighbour, brother-in-law in Chicago and two friends here is Exmouth, Devon. When we were young…..ages 7-30? I only remember one person, a great uncle, with Parkinson’s. Since the covid vaxxes I know too many people with Parkinson’s. Again, thank you.
I was diagnosed with Parkinsons in May 2020. After taking levodopa together with a variety of enzyme inhibitors, in particular entacapone, my symptoms were reasonably well controlled. My condition continued to deteriorate and my quality of life started to suffer as a consequence. Towards the end of 2022 I had developed problems with diarrhoea with all the limitations that brought with it. Following a colonoscopy, I was diagnosis with microscopic colitis. From the Mayo Clinic web page I found a reference which linked taking entacapone and having microscopic colitis. I passed this information on to my consultant who advised that I stopped taking entacapone and assess if this had any basis to it. The diarrhoea stopped almost immediately.
As an alternative I was prescribed opicapone which had only been recently approved by the NHS in Scotland. Sir Nicholas referred in the May 2023 podcast that the introduction of opicapone had made a dramatic difference to him and as your newsletter states ‘transformational effects on his symptoms’. I can concur directly with his view and for me taking opicapone has been a game changer. It had a very positive impact almost immediately. My movement, mobility, energy and enthusiasm for activity, in my case, walking and sea fishing from my boat have become, once more, achievable and enjoyable. More than eighteen months in, these improvements have largely been sustained. I would agree with Sir Nicholas that a whole programme, having a more detailed look at the impact of this drug, could benefit many more Parkinsons sufferers.
Morgan H. Goodlad
Shetland Isles
My brother developed early onset PD 15 almost 16 years ago. Found in the last 4 years that a treatment to address systemic oxidative stress and aggressive management of diet and levadopa to manage symptoms and also to maintain strength has been extremely positive. No progression of the disease 42 months (via PET). UPDRS-III scores are in single digits. Sometimes I think the medical community just expect deterioration.
Here's a couple Parkinson's posts you may be interested in.
https://goinglikesixty.substack.com/p/im-a-lab-rat
https://goinglikesixty.substack.com/p/my-doc-leads-team-that-developed
So helpful Thankyou!
Thank you for sharing this information…I will pass it on to my neighbour, brother-in-law in Chicago and two friends here is Exmouth, Devon. When we were young…..ages 7-30? I only remember one person, a great uncle, with Parkinson’s. Since the covid vaxxes I know too many people with Parkinson’s. Again, thank you.