q10 and other things

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q10 and other things

Postby Arthur » Wed Jul 29, 2009 11:34 pm

Hi everyone, I've been taking q10 for the past year (my eigjth with psp) I take 2400mg each day,

I have seen improvements in my speech, I hardly cough but my balance hasn't improved neither has my eyesight, I take a long time to focus, especially on this keyboard. I still get dry eyes, but generally, things have been put on hold for a while, So I do recommend q10

I am trying to find out about Sodium Valporate', especially dosages.

thankyou, Arthur
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Postby Robin » Thu Jul 30, 2009 8:33 am

Arthur,

Thanks for sharing your CoQ10 experience. Are you participating in a study in the UK into CoQ10, did you try it under your MD's direction, or did you experiment on your own? Perhaps you can say what brand you are using and where in the UK you purchase it, in case others from the UK want to know.

I've only heard about valporic acid being used once or twice experimentally in PSP. Did you do a search of past posts here on the topic? Or a PubMed (pubmed.gov) search of PSP and "valpor"?

Robin
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Re: q10 and other things

Postby rahimes » Sat Feb 11, 2012 6:13 am

My husband was diagnosed with PSP in 2008. We have started using wheat grass this past summer and have seen good results with his response time in conversations.
He is much more quick to respond. Our family and neighbors have noticed the difference and wanted to know what we were doing differently. He is also taking Ubiquinol (CQ10) 1500mg and it is enough to stop the
coughing he was experiencing and also because he is taking a statin. A cardiologist recommended the Ubiquinol. We started with 1200mg and just this past week upped it to 1500mg because of the coughing and what I had read about the other post from Arthur and his results with 2400mg. At this time 1500mg appears to be enough to stop the coughing. The wheat grass does not help with the balance or eye issues, but my husband said quote "my brain does not feel foggy".
He takes 10 times the amount of recommended wheat grass that is on the box. He works out with a personal trainer one day a week. This had also helped with his balance issues, as he has built up his core muscles. He does fall but so far we have been lucky in that he has not broken any bones. He walks only with a cane and sometimes not even with it.
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Re: q10 and other things

Postby eplowman » Sat Feb 11, 2012 1:04 pm

rahimes,

Interesting. Thanks for posting.

What is the nature and source of the coughing? Sinus drainage, chest congestion, irritrated throat, or ? Was he, is he, a smoker?

I have taken COQ10 (Costco brand) for years on recommendation from my cardiologist. We tried large doses with my late wife in mid- to late-stage of autopsy-confirmed PSP, but saw no changes and halted it. That's the way it is with PSP, it seems: what works for one patient may not work with another. Puzzling, and sometimes frustrating.

Was your husband's PSP diagnosed or confirmed at a major university-related medical center or at a private neurology practice?

Falls are his greatest risk of serious, permanent injury. I need not remind you that it takes only one fall to make both his own quality of life AND tasks of caregivers more difficult for the rest of his life. I speak from experience and from the experiences and reports of others here in the forum! Your man has no control whatsoever over falls. He may not even be aware he is falling until he crashes into something or onto the floor. If he is aware that he is falling, he is helpless to stop or try to cushion the fall. A cane is of virtually no preventive use whatsoever, and can be detrimental by creating a false sense of security and may add to any injury in a fall. He and you (or anyone else with him) need to be proactively defensive on the issue of assistance when he is on his feet. Walking arm in arm is part of it in early stage. Better wounded pride than a trip by ambulance to the ER!

I do know the importance of exercise for PSP patients; it was a vital element in Rose's care -- even in late stage. It's great that your husband is doing as well as he is. Make sure the personal trainer has been provided fact sheets about PSP, its symptoms, its impact on executive functions, and so on. Same for any doctors he visits in the future. They will be grateful to have the information.

Allow me to add an unrelated suggestion: keep a journal, noting changes you see in symptoms and when they first are noticed. Also complications and illnesses, meds prescribed, events like falls, anything very unusual. This will be invaluable information for your husband's neurologist and other doctors he may see -- and for you and other caregivers to have.

As our member Joe Blanc often says -- COURAGE!

ed p.
Last edited by eplowman on Thu Feb 16, 2012 2:06 pm, edited 1 time in total.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: q10 and other things

Postby rahimes » Thu Feb 16, 2012 10:36 am

Your questions are good ones, Ed. He was diagnosed early on by a private neurologist in our community and immediately recommended to a major university in our state.
We have been working with the neurologist at the university. My husband is enrolled in the nation wide study on researching the cause of PSP. The main site is in
Louisville, Kentucky with satilites in other states around the country. I do keep a journal but not a religiously as I should. At one point I was doing it daily.
The cough was PSP related somehow. He passed his last swallow test with no problems, just recently. It is quite a frustrating disease as you know.
Thank you for your suggestions. Our trainer has a personnal friend, who is a physical therapist, who works with clients who have PSP. She has given her some valuable information on
how to work with him.
On the CQ-10, we have a recommendation to take the Ubiquinol form for people who are over 55. It is better absorbed by the body. I order it on line for my husband, from a site the
cariologist gave us.
My husband also has a massage therapist who comes once a week and it seems to really help loosen up the neck muscles. I think if he could have a massage every day it would be
the ulitmate for him.
Some days Courage does not seem to be enough.
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Re: q10 and other things

Postby eplowman » Thu Feb 16, 2012 2:25 pm

rahimes,

Some days Courage does not seem to be enough.


Sadly, how very true. Most of us know by heart what you mean.

Sounds like your husband may be in a middle stage. Your love for him shows. He is fortunate to have YOU as his caregiver and advocate. You are caring, informed, and proactive. (And probably very tired, too!)

Keep on keeping on. That's all you can do, and what you do best.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: q10 and other things

Postby rahimes » Fri Feb 17, 2012 5:55 am

Ed,

Thanks for the encouragement. Today is the first day I am leaving him in the hands of another caregiver besides me.
I have been taking him to all my appointments as well and poor guy that has also meant my hair appointments.
We are working through a company called Helping Hands and they are sending a person out to stay with him
for the time I am gone to have my hair done. We will see how it goes.
You must be very familiar with the tired aspect of the caregiver.
The stages of this disease is something I have not quite understood, as none of the docs can really give
us an accurate picture, other than he is doing well and that the window is around 10 years.
Thanks again,
Rita
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Re: q10 and other things

Postby eplowman » Fri Feb 17, 2012 6:58 pm

Rita,

There's no definitive specification for "stages" of PSP, nor can there be, partly because symptoms can vary as the disease progresses. Partly, it depends on what parts of the brain are under attack at a given time, and that varies among patients. Partly, it depends on the length of "plateaus" between noticeable "step downs," or declines, and that varies among patients. Partly, it also may depend on non-psp factors -- a patient's health and medical history, general fitness, regular exercise or lack thereof, and so on. With recognition that the boundaries between early, middle, and advanced can be blurred.

For convenience in discussions here in the forum, I use my own non-specific , general descriptives of "early," "middle," and "late" or "advanced" stage, generally pegged to level of mobility, level of assistance needed, level of functional ability, and severity of symptoms.

It's great you are keeping a journal. I did not. I wish I had. If we all kept journals noting symptom history, changes, reactions to meds, etc., that could be a great help to the patient's doctors, and a potentially important contribution to medical/neurological research.

It's good you can have a sitter/companion to keep an eye on your hubby while you are running errands and keeping appointments. You need to take some time for yourself and pop in and out of the "real" world out there as needed. In time, you will want to arrange for occasional longer respites. If you have friends at a church or other religious organization, that might be a good pool from which to draw volunteer sitters. Later, you'll want assistance from experienced health aides.

Take care. And know you have friends here cheering you on. Holler if you have special questions.

The moderator may want to move this topic and discussion over to the General Discussion section of the forum. Look for it there if you don't see it here. More eyes will see it there.

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Re: q10 and other things

Postby duddlydo » Mon Jun 11, 2012 3:05 pm

I have been taking Ubiquinol (CQ10) 2400mg/da since last Sept, dx w/ PSP last Aug (Puritan Pride brand). Only side effect is occasional bout of Acid Refux. Usually take 2 400mg soft gels w/meals to minimize acid reflux. I think it may slowing the progression, but it is hard to tell. I have noticed walking/balance, speech get worse w/o it.

A very good paper on CQ-10 can be found at:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785862/
Be sure to download full paper at "PDF (281K)" in upper right corner.

J. Wright
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Re: q10 and other things

Postby Robin » Mon Jun 11, 2012 6:44 pm

J. Wright,

Thanks for posting about your CoQ10 experience, and the link to the 2009 paper.

What do you make the NIH stopping its clinical trial in CoQ10 for Parkinson's Disease because they could see no benefit?

Robin
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Re: q10 and other things

Postby duddlydo » Mon Jun 11, 2012 8:42 pm

Robin,

Although the PD trial was stopped, The Lahey Clinic Phase III clincal trial for PSP is still on-going, Supposed to end June 2013:
http://clinicaltrials.gov/ct2/show/study/NCT00382824?term=Coenzyme+Q10+PSP&rank=1
So the jury is still out. Also they are using a dosage of 2400mg/da.

John
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Re: q10 and other things

Postby Robin » Tue Jun 12, 2012 11:04 am

I've kind of given up on Lahey Clinic. They've been studying CoQ10 in PSP since 2005 or 2006. We've never seen results published.
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Re: q10 and other things

Postby rahimes » Thu Jun 14, 2012 6:49 am

Robin,

My husband has been taking 1200 mg of Ubiquinol and there is a difference when he does not take the correct dose for
him. Ubiquinol is CQ10 but in a more easily injested form for the age of my husband.

Rita
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Re: q10 and other things

Postby Robin » Thu Jun 14, 2012 10:13 am

Rita,
Glad you see benefit for your husband. I don't think any researcher found any difference at 1200mg which is why all the tests the last several years have been at the 2400mg level.
Robin
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