Has anyone tried supplements?

[Baytalon]

Hello friends, I was wondering if anyone had tried any nutritional or other supplements? Our nurse practitioner it couldn't hurt to add Co Q 10 and DHA to my husbands daily meds. Anyone have an opinion.

[Birdman34265]

Hi my wife had psp she has been on supplements for about 12 months ,its hard to know if they are working ,her balance is slowly getting worse but no change in swallowing, eyes,speech. The one supplement i used first was lysine. Its used for cold sores with is a virus ,psp may be a virus? the others are acetyl l carnitine, n acetyl tyrosine. also we take coconut oil in tea,coffee does help with brain function. You have to try these all in safe limits,search in Google, get a good doctor who will help you,all the best ,Peter

[Baytalon in reply to Birdman34265]

Thank you, Peter. We are using DHA and Co Q 10 in addition to his usual vitamin and mineral supplements.

[Birdman34265 in reply to Baytalon]

Thanks for the reply, one important thing with supplements is that it has to be brain food, to support brain function

Thanks Peter

[easterncedar]

With the advice of our neurologist, who specializes in PSP, my sweetheart took large daily doses of CoQ10 for a long time. Like 1800 mgs. in capsules, whatever brand was on sale. I was inclined to credit it with the comparatively slow progression he had. Eventually the disease began to win, and I gave it up. I posted a lot about it, as Dr. Apetauerova was involved in a major clinical trial. Although the results were not as she had hoped, she remained convinced that for some patients it could help.

[sasmock in reply to easterncedar]

DId your neurologist explain the difference between normal COQ10 and the activated form (ubiquinol)? Apparently, the activated form works much better. I've only tried smaller doses with my dad though, because it's prohibitively expensive for us, sadly

[easterncedar in reply to sasmock]

She did not. I did the reading. In the end, well, six years after diagnosis, my sweetheart is dying. I had to try, because it was comforting to imagine we were doing something, but basically don't think any meds or supplements did much. I think PT and SALT were the most valuable interventions. My guy being stubborn also was key!

[Baytalon in reply to easterncedar]

PT I know but what is SALT? I also have a tough bird and I think that serves him well.

[easterncedar in reply to Baytalon]

Speech and language therapy.

[Baytalon in reply to easterncedar]

Thank you, Eastern Cedar. My husband has taken Co Q 10 for several years because of his heart attack and stroke. We have increased it to 1200 MG recently.

[sasmock]

I notice a difference in my dad when he's taking B vitamins. We use an activated product called Max B-ND by Premier Research Labs. Standard B vit tablets from pharmacies are not activated so can't be well used by some people. The liquid form in Max-B is instantly available to the cells so can get straight in where it's needed. It's expensive though, unfortunately, as is everything that works.

[blackhill]

We tried the ubiquinol (form of coq10). Not sure he took large enough dosage.....not sure it helped but after reading the research, felt worth a try. The capsules were hard for him to swallow so also tried coq10 in a gummy version. We recently started American Ginseng on the recommendation of palliative care to help,with fatigue. Have not been on it long enough to know if a help. There are some limited research studies about fatigue with cancer patients.

[Baytalon in reply to blackhill]

thank you

!

[Christine47]

You name it, we have probably tried it. I am really compulsive about diet and supplements and exercise . My husband's progression is slower than average, I am told. He can still walk with assistance, speak, swallow, feed and dress himself. His biggest issue is his double vision. He is into his fifth year since diagnosis and ninth since symptoms showed. There are a number of things I would have done more aggressively earlier on which might have helped even more. And there is no way of knowing if what we have been doing is even helping!

[Baytalon in reply to Christine47]

Can you share what you wish you had done more aggressively? We are early in and presently supplementing primarily with Co Q 10 and DHA, plus his usual vitamin regimen.

[D0ttieL0ttie]

Hi

My husband went down the Haulistic route on first diagnosis and took several supplements, having consulted with a haulistic therapist who, in our opinion, was genuine and really cared about G's health, however it is very difficult to know what benefit they give as it is almost impossible to measure.

At least it gave G some control over what was happening at this time, but his disease has progressed as predicted.

Stay away from Melatolin and watch out for fraudsters, there are a lot of cranks out there, as we found out when G was sold Melatolin by a crank called Jeffbo in the USA and told to increase the dose daily up to 20 pills a day!! Clearly that did not happen and we learned from our Consultant that this drug is not something available in the UK.

My advice would be to always tell the medical team around you about these supplements before taking them.

[Baytalon in reply to D0ttieL0ttie]

I am sorry you ran into snake oil salesmen. There are a lot out there. We are working with our neurologist and his nurse practio

[Hidden]

my wife has had psp for about two years now, she cannot eat anything solid for the last two months, even blended she cannot eat sufficient, so her dietitian has put her on nualtra food drinks, which have all the supplements the body needs, for a man 2500 calories, for a women 2000 calories. There are various flavours. She is on the waiting list to have a peg fitted, then she will be able to live on the supplements alone by being fed through the tube.

[Baytalon in reply to Hidden]

Thank you, Clytie.

[Javan in reply to Hidden]

The peg is the best thing. I honestly feel that if the peg was fitted early on the loss of skills would have been reduced. Also fitting the peg would have been easier.