I haven't read any postings about this yet but will do so over the next few days.
I saw my Neurologist yesterday. He was quite enthusiastic when I brought it up. I had previously read on Mayo Clinic's site they were having some success with this in regards to PSP but wasn't specific at all.
I had already purchased a bottle of it to make sure I had the right thing. There were 2 dosages; 100 or 200, so I grabbed the 100 since I'm smaller. Not sure about other countries, but in the US, you can buy it over-the-counter at a drug store.
I asked him to explain specifically how this helps with PSP since the packaging also refers to it promoting heart health. He said with PSP "a whole bunch of brain cells randomly get together and die, like committing suicide, and don't regenerate.". Those are his words, not mine.
What the Q-10 does is interrupt that signal and stops it from happening, or slows it way down, or only allows fewer cells to get away with it.
In terms of heart health, he said it operates close to the same; helps prevent the cells from dying.
He said there is much research going on with the Q-10 they are excited about and that it is absolutely not harmful and could prove very helpful, especially in the long term.
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JudyJ
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Alot with PSP have tried this supplement. I saw no effect either way. My mum had capsules and tried the form Ubiquinol too. They will not do you any harm, but saw no improvement either.
Hi Judyj, Yes when i read about the trials for Coq10 a couple of years ago i thought i would try it on Hubby? I ordered heaps from Puritan Pride every 6 months as it was a fraction of the cost in Australia, Hubby took 2400mg per day and i had to order the largest tablets or he would have had to take heaps of little ones. Well he took them for around a year or two but didn't see any improvement? when he could no longer swallow them i crushed up his vitamins and squeezed the Coq10 onto them mixed and spoon fed it, but he still declined in health and this was only the second year of diagnoses. CoQ10 will cost you a lot of money, but what is a life worth? as far as i have seen up to date No improvement in body, no improvements in swallowing or thought.
Please read all the data you can find on Co Q10 then make a decision unless you have plenty of money! I stopped hubby's CoQ10 when i realized it wasn't delaying the disease, and seeing his face as he was spoon fed all the Medicine every morning, the cost was so high even at the price i was paying and now he would choke if i tried to spoon feed it to him, I also worried that it might make him more alert to what was happening to him, and that in it's self would have killed him i think! ( although i didn't see any improvement) Hard decisions to make and you must start taking them ASAP . good luck with yours
Bless you as his caretaker; the things you've tried, the expense invested, but mostly, your obvious love & empathy for him.
My 100 mg a day is a spit-in-the-bucket compared to your Husband's 2400. It's available her OTC in 100 or 200 mg doses. Perhaps you can get a higher dose via a Doctor's prescription but he didn't mention it.
mummybear sums this up best. It is okay trying things in the beginning but when someone has swallowing problems, the fewer capsules, tablets and supplements the better.
You make a good point. I'm in the early stages, but am just starting to have problems with swallowing food. A few weeks ago, I aspirated 1 small med tab into a lung & coughed & coughed til it came up.
Thanks. I'm taking it anyway, tho I don't have great expectations. I need to know, especially for my daughters' sakes, that I've tried everything I can to slow this down or stall it. Tho I was diagnosed only 6 months ago, I can feel the changes, & others can see them. It's a little discouraging but I'm still determined to try to stabilize.
Judy, my wife has been on this for at least two years. She is currently at a plateau with PSP but we don't know if the drug you mention is having any effect. There are several schools of thought on the effectivness of it outside the KNOWN advantages (this doesn't include PSP).
I know it's questionable with PSP, but I'm taking it anyway. My Doc also said it is good for the heart, which is what the labeling refers to; he said it helps the cells from dying. Can't hurt, might help.
I guess we are all different.... Some people with PSP will benefit from Q 10 some not. I have read that they should take it only as a liquid ! not tablets! its still very expensive but we are trying to give to my dad everyday, 3 times a day. I am getting it from Germany. In UK you will not find it. I have also found it in Poland (i am polish) but in a smaller bottles.
He it taking now 1 month, but unfortunately no results yet.... Apparently you could see a slight improvement after 2 month taking. Good luck to everyone! hope that will help .
Hi, Ania.I am very sorry that Sanomit doesn't seem effective for your dad so far.Let's hope this 'll change and you 'll see some difference.I totally agree with you, psp is a very "personal" disease.Wish you and your dad the best in the future, John.
thanks again John! i just wish we had this kind of website in Poland, for my mum to get some information and to get stronger, and for my dad to get some motivation! yes, he takes Sanomit for a month now, but i guess he needs another month to see any benefits , right?! i have a faith
Huh. I didn't know it was available in liquid form. I'm In Minnesota, USA. A bottle of 100 mg capsules costs $20/month. How much is it there and how high is the dosage?
Hi Guys, I hope I'm not intruding but i would still push Puritan pride for there price of CoQ10, even though it cost me about $30 postage to Australia it was saving us a fortune, look them up on the web, also they often have it on: 2 for 1 deals or 2 for 5 deals and in different dosage sizes and i believe in liquid form. All the very best of luck to everyone, my thought are with you all.
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Routine visit with neurologist today - different diagnosis?
I don't know where to start.
When does it start to improve?
Hello from Indiana, USA
How can I get help from a Neuro Physio?
