Supplements

[Abrecheisen53]

Along with our Neurologist, we have been seeing a Function Medicine doctor who has prescribed a number of supplements for John to take. I really can't say that they are working. A very expensive route as none are covered by insurance here in the US. Has anyone else tried them? Were they helpful? If so, which ones do/did you use?

[carehope]

Hi there !

You didn't say what supplements the doctor had recommended . I have my sister taking several ; esp. CoQ-10 , a potent antioxidant, which has been proven to help slow down the progression of PSP in some pts., probably those who don't have other chronic serious diagnoses or for other reasons unknown at this time. Antioxidants are high on the list for any of us humans . A good multivitamin can't hurt either !

If you enter in key words on this site, you will find all sorts of posts regarding this topic, that IS, supplements and meds that people have found to be of assistance. Antioxidants and a healthy eating plan seem to be key in assisting the body in general. Of course, one person's PSP is not another person's PSP. SO many factors are involved. CoQ-10 or Ubiquinol ( related forms ) are used in high doses to be hopefully ? helpful. This would be at the 1800 to 2400mg a day level. This would also be in an oil based form. Certain forms of B-12 also in high dose form ( easy to take ). By the way, if swallowing large CoQ-10 capsules is a problem, there are large chewable rounds which were used in one of the studies. Some people may not be able to take them at all. I also give my sister L-Theanine and 5-HTP morning and eve.. Her prescribed meds are few; just for anxiety and depression . So far, everything that has been prescribed for the problems of balance, attention, whatever, have had side effects that only exacerbated the PSP symptoms or caused other problems.

By the way, we're in NY. Best wishes to you and John. !

Take care,

Elise

[Hidden in reply to carehope]

Hi!

Joe takes 5,000 mg B12 daily sublingual

And 1600 fish oil liquid after breakfast.

Diagnosed C BD in 2014.

We are also in NYC

Still mobile with limited speech

[easterncedar in reply to Hidden]

Rita! It's been a long time since I've seen you here. How are you? Are you fully recovered from your own hospitalization? Glad to know you are still in touch here.

Love, Ec/Sarah

[easterncedar]

Our neurologist recommended 1800 to 2400 mgs daily of CoQ10, which my sweetheart took for some considerable time. I don't know if it helped. I thought so for a while, then the deterioration came on so fast it seemed like shoveling sand against the tide to keep giving it to him. His GP was keen on prescribing vitamin D. Every patient is different. Sometimes taking something gives hope, and it may be worth it for that.

Best Wishes, Easterncedar

[crab2093]

Ch has been taking Morinda (in his morning fruit/vege shake) and just started B12. He was taking creatine but we had a heatwave and his whole body ever heated day and night so we have stopped that now. He is still unsteady but has not seemed (to me) to be getting more unsteady (although he has fallen 3 times today - but that could be this mad wet weather we are having in North Qld). I think that it is all guess work. Make the most of each day.

Val

[Kevin_1]

Hi

I see a few folk have commented on CQ10. There was a pilot study which showed a slowing of PSP in some patients. It went on to be a medium study and sadly that showed that in a larger population there were no significant benefits for PSP. We tried it for a couple of years and the illness just progressed. Whether it slowed or not we could not tell.

If you are keen on Functional Medicine you might want to read the first few chapters of "The End of Alzheimer's." There are some very significant cross overs with PSP. neurofibrillary tangles and the like.

Here's a review:

unconventionalmedicine.net/...

I hope this is of some use.

Warmly

Kevin

[Abrecheisen53 in reply to Kevin_1]

Thanks Kevin, believe it or not that is how I found our Functional Medicine Doctor(FMD). I had read about Dr. Bredesen and his successful work with Parkinsons. Our FMD in the US works closely with him and initially, we followed Dr. Bredesens' protocol. Once it was decided that John had PSP, Dr. Bredesen agreed that John did not fit into the trials he was conducting. If we ordered the supplements on his protocol from the UK, the costs would be prohibitive ($5K). Instead it was decided to provide support for general health and mitochondrial support. I have no idea if any of this is helping. Thanks for the link and book reference, will definitely check them both out. Alice

[Kevin_1]

Hi Alice

Wow - your really are seeing top people.

I have read quite a bit about the biome and diet (less so about treatment regimes). Putting Bredeson's treatment programme to one side - He has done his research etc. As a field its still in its infancy. That is there are many trials mostly with small populations showing startling results. More research comes out all of the time. I think we may be looking at a whole different way of eating. Our current diets will, I think, come to be seen like smoking.

$5,000 - Is that pharma heavy charging? - I do hate the way they do that.

Anyway - I do hope you will post and tell us about what you are doing treatment wise and give your thoughts as your FMD treatment progresses. Folk here will probably be very interested.

But most of all I hope it really makes a difference.

Best to you both

Kevin