Hello ... I am new to this forum. I am 57 ... - PSP Association
Hello ... I am new to this forum. I am 57 yrs. old and recently diagnosed with psp. How much Co.q 10 are you supposed to take?
I live in the USA. Our choice over-the-counter is 100 mg. or 200 mg. per day. My Doc wanted me taking 100. Believe it depends on weight. He said he has patients that swear by it. To be honest, I did not give COQ10 a good try; was inconsistent in taking it so I eventually stopped; so, I have no opinion one way or the other if it helps.
The only explanation I have is I was pretty overwhelmed when I was first diagnosed. I was already taking a few meds for other things and then with the PSP, more meds were added to treat the symptoms. It was a lot of pills a day, and felt 'pilled-out'.
But after the holidays, I'm determined to give it another try, this time a consistent one. As well as coconut oil. Don't know if you've heard of it yet. Supposed to help with imbalance and reduce/prevent falls. I could only find it in a paste form and didn't tolerate it so well, so that was short-lived. However, I just found it liquid form over-the-counter at the pharmacy and am going to commit to using that too for a period of time. My Doc said he also has patients who swear by that one, too.
I'm 55; we're both on the younger side of being diagnosed with this disease. I've found this site to be a wealth of information, support, compassion, and some much needed humor at times. I hope you stick with us; welcome!
Best wishes,
Judy
Dear Judy,
Got a strange one for you........whilst on the subject fo supplements........
My husband visits a number of pharmacists, and the is one who heavily advocates nictotine for PSP. Have you heard of anyone using nictotine patches, or taking up smoking cigarettes for PSP?
Regards,
Alana - Western Australia
Hi Alana
Briefly, it's been known for many years that the incidence of Parkinson's in smokers (particularly current ones but also those who have stopped) is much less than in non-smokers (about 40% less). It's been shown that nicotine causes the release of more dopamine, and the latter is lacking in Parkinson's and PSP (hence the slow movements and walking, postural problems - along with tremor in Parkinson's). Nicotine does not tend to slow the progress of PD once the disease is active, and no one suggests "smoking" as a preventative measure for PD. Too many toxic materials in tobacco!!! (There are some genetic factors as to how nictotine acts on the neurotransmitter system).
Interestingly, nicotine (acting like acetyl choline) also has minor benefits in Alzheimer's (where acetyl choline is diminished) and assists with cognitive problems (and may act similarly in PSP).
Nicotine has also been used in depression, since it affects levels of dopamine and serotonin (the neurotransmitters associated with pleasure).
All the best
T
My brother-in-law has (terminal) brain cancer, and says smoking tobacco makes him feel more stable, centered and alert.
Thanks for responding Judy 
I have found this site to be informative... I have gotten my head around the diagnoses..think I may be 3 years into it. I have decided to concentrate on living vs dying... I will do what I can to be as healthy as possible. It is the medium length (6) essential fatty acids, which coconut oil contains, that are apparently helpful. I take 4 of 3,6,9, Co Q 10, and 2000 D daily. I work out in the morning (stationary bike, weights) before I go to work. I have reduced my hours to 20/wk to allow more time to compensate for my being gimpy. I haven't perceived any behavioral changes although I can well understand how people with PSP could become depressed. Reading of the process is difficult as it is described so negatively here.
I am finishing off a masters degree and I hope complete my thesis while my brain is still functioning.. although I been lead to believe that dementia in PSP is supposed to be milder.
I have been recently engaged... found the man of my dreams to spend my life with. It saddens me that this time will be shortened or may not come to pass at all as I am not a good pony to bet on anymore. One day at a time... and I feel blessed for everyone one of them...
Wow. That is a bit out there... Is your husband already a smoker? Doesn't sound like it, but if he is, he may have been told it's more stressful to stop than to continue sometimes, creating adverse affects with the PSP.
I'm a light smoker and my Neuro knew this from day one. We had a few discussions about me stopping, tho I knew it would increase my stress load which was high enough. He was very honest with me and said there are just those situations, this being one of them, in which of course he should tell me to quit, but he was good with me continuing. Said timing is everything and it wasn't the time. I still am but have cut down a lot. Do intend to give it up for good in the very near future.
The patch has always worked for me quite well. It would make sense if he's a smoker to encourage him to step-down to patch to increase the oxygen levels in his systems. But to advocate the patch, much less starting to smoke, as some kind of therapeutic source, sounds kind of crazy, to be honest.
And, that kind of advice should be coming from his MD, not a Pharmacist.
So to answer your question, no, that type of 'therapy' hasn't even been in the wind that I know of. It will be interesting to hear if others have heard of this as a positive tool. Rather, at first blush, it sounds to border on malpractice...
My husband was involved in the davunetide study at the University of Utah and while there they recommended that he take 600mg of CoQ10 4 times per day. We are waiting to hear the results of the study that was being done....should be out soon.
We're still waiting for the Lahey Clinic study of CoQ10, due to be complete this month. His neurologist encouraged my guy to take 1800 mgs a day, so he has been taking 600 mgs three times a day for the past 2 years, more or less. It has perhaps slowed the progress down, but it sadly hasn't stopped it. My guy says he hopes the trials show that the pills don't do any good, so he can stop taking them. I'm hoping the results show that there are real benefits and he should be taking lots more! I guess that discussion says something about how my sweetheart is feeling these days.
Hi I very tried a low dose o f co q10 but no reall benefits. It is v expensive in the UK so hsve not pursued it
Will wait4 . The study results. Lol Jill
Yes, it's expensive here, too. Maybe if the study comes up positive it could be covered by insurance. It's so hard when nothing helps, isn't it? I will send wishes for you and everyone here that the New Year brings us some hope. Love and Peace, Easterncedar
Love and Peace to you too Easterncedar
That is good to hear! I also heard 5mg per 5lb of weight.
Hi Easterncedar... My reply to Judy reports on how I am doing... My Dr. did not soften her dx for me either.. 
Hi, Lynda. I was just thinking about how terrible we felt when my guy's diagnosis was confirmed; the neurologist didn't try to soften the news, and, although we thought we were prepared, it was quite a blow. So I just want to ask how you're doing, and send my best wishes your way. Easterncedar
