COQ10?

[crab2093]

High I suffer from PSP and am thinking of trying CoQ10. Has anyone had any experience. What is the latest on CoQ10.

[Kevin_1]

Hi Crab2093

Yes, we tried it. It's so hard to say whether it did any good because of the way Liz deteriorated in step downs and they seemed to come at a faster or slower rate anyway. Overall we though it wasn't of benefit. We were using quite high doses too.

There was a small pilot study which seemed to indicate enough efficaciousness that they went onto a larger study. That study showed that there was no benefit in taking it and the research into it was cancelled.

The most promising things are those currently undergoing drug trials. If you are in the states you might want to sign up for them. If you are in the UK talk to the PSP Association or your neurologist.

I hope this helps a little.

Best to you

Kevin

[crab2093 in reply to Kevin_1]

Thanks for your prompt reply. We have followed the progress of you and Liz and your continual useful statements as you support Liz through the horrors of PSP. We are from Townsville , Australia. Charlie is the only PSP person we know of in our city (we joined the Parkinson group for support). On this site we met someone from a city 600 kilometre south.

After a diagnosis in April 2017 (although I think it has been there for 3 year before) we notice that the deteriorating feature is balance. There were 3 falls today one in the bedroom, one as Ch went to his plants nursery, one in the shower tonight. Otherwise minimal choking as we have learned to make stir fries, stews. & fish dishes with everything cut small, speech is still reasonable, vision ok but not on the periphery. Use of computer is not so good now with right hand doing its own thing. However he can still make himself a morning drink containing two fruits and a quarter cup of Moringa (oleifera) leaves. He has been doing this since Feb this year. Walking is unsteady but ok using rails etc. He uses a wheely walker and we have ordered a wheelchair. Services are ok here. We don't know if the Moringa is helping as we are not sure how fast the progressive goes. Thanks again Kevin, hope all goes okay with Liz. You are a guiding light and a great strength to me. ... cheers Val

[Christine47 in reply to crab2093]

The Biogen Passport clinical trial has a recruiting site

Australia, Victoria

Research SiteRecruiting

North Melbourne, Victoria, Australia

This might be something you would like to look into.

[Kevin_1 in reply to crab2093]

Hi Val

I read your post with much sadness.

It is a post I could have written some years back.

Many of us here have been where you are now.

You're clearly a good carer. Watching for new inabilities and I expect trying to find the balance between keeping your man independent, whilst trying to keep him safe.

It is hard and emotionally a constant hurt. Waiting for the next thing.

So do look after yourself too. Caring is tough, even for an Aussie

You and Charlie's trials are well understood here. Kilometres don't matter much. Excepting for the face to face.

I'm so pleased you get good care and support where you are. That is so important.

Pull up a chair and be welcome here.

Warmly and wishing you and Charlie many good memory making joys still to be shared.

Kevin

[hubetsy]

My husband took 2400 mg daily for over a year. No effect that was obvious. Heard that a study of high doses (2400 mg) confirmed our experience.We take 300 mg daily. Not for PSP.

Exercise has been our best "treatment" which held many symptoms at bay for a long time (13 years).

Best wishes as you walk your path with PSP.