[Virginia Therese]

Hi, everyone...I don't know if this is the correct place for me to introduce myself, but it seemed to be the only place that I could do this...so, we shall see.

My name is Therese (Terri will be fine). I want to tell you that I do NOT have PD...I am a carepartner for one who does have the disease. Although I am a member of several caregivers' forums, still, I feel that I want to be in a place where I will be able to learn firsthand about the disease from those of you who are experiencing it...the more I can be educated by those afflicted with PD, the more I feel that I can be an "all-round" carepartner.

I do have a specific question to ask today. I can recall that when my pwp was a member of BrainTalk Communities, there was much discussion about the possibility of the benefits of Co-Q10. I also recall that it was considered to be a very expensive supplement, but that some recommended Puritan's Pride as being both a good brand AND less expensive. My pwp is presently taking 300mg., 3 t.i.d (900 mg. daily), although I believe that the recommended beneficial dosage is 1200 mg. daily...and it IS very expensive. I guess my questions to all of you are: (1) How beneficial have you found Co-Q10 to be; (2) Would you recommend the Puritan's Pride brand both for its beneficial properties and cost-wise?

Thank you for any information that you may be able to provide.

I just want to say that even though I do not have PD, it just may be that I might have some information that could be beneficial for you in that I have been my pwp's carepartner for approximately 10 years so that I have had some experience from that perspective.

I am happy to be here.

Therese

[Chemar]

Hi Terri

i have copied your post over from the New Members forum to here on PD forum as I know the members here will have lots of helpful info for you

[EnglishCountryDancer]

Welcome.I too am the partner of a P.W.P though I have been in this position for a relatively short time.I guessed what it was about three years ago which was before we could get a diagnoses.I have found this forum a wonderful help and support.

[Virginia Therese]

I very much appreciate your redirecting me to the proper place for my post. I had had difficulty attempting to locate the proper place to introduce myself as a new member..and, rather than not being able to post at all, I did what I felt I had to do to arrive at the correct place. Thank you so much for your help.

Virginia

[Virginia Therese]

Hi there, EnglishCountryDancer...thank you for the nice welcome. It is good to know, too, that I am not the only caregiver here.

Virginia

[Virginia Therese]

I signed my post to EnglishCountryDancer with my first name, i.e., Virginia...I am using my middle name, Therese for this forum (Terri)...just felt I needed a change...

Therese

[stevem53]

Welcome therese..I dont know anything about Co-Q10. but I know that some of our membership does..You have come to the right place..Enjoy!

[Virginia Therese]

It was nice to see your welcome, Steve..thank you.
I have to tell you that before joining the forum, I was a "lurker"and while lurking, I read the very interesting posts about dextromethorphan (DM), especially noting your posts and the seemingly good benefits that you have had while using DM. It seemed, too, that others had started taking it and had found some benefit. I also "waded" through some of the more techinical information...trials, etc. so that when we see my pwp's neurologist tomorrow, and I mention to him the benefits that some specific people here have experienced, I will be able to "back up" some of the information, i.e., that it's not just something that a few people have cited as to its benefits, but it also has some clinical/techinical merit.

Thank you again, Steve, for the welcome...I think I will benefit a great deal by having become a member of this forum.

Therese

[RLSmi]

It's good to have you join us.

I'm a 68 yo PWP with Dx over 6 years ago. I have been taking CoQ10 from Sam's Club (Maker's Mark brand) for 4 of those years. My daily is also 900 mg. I am also a DM user, along with the usual sinemet and amantadine. I was diagnosed before my symptoms were very obvious, but when the Neuro gave me sinemet to see how I responded to it, I knew within a day or two that it had to be PD.

I have been on sinemet since then, started CoQ10 just as soon as I heard about the results of Shults' 2002 small clinical trial. I began on DM after I learned that it is of the same class of drugs as naltrexone, a drug that AshleyK, another pwp member of this forum, had been using using a "LDN" (low-dose naltrexone) regimen to try to slow the progression of symptoms, and it seemed to be working for her. The LDN regimen was originally developed by the late Dr. Bihari of New York and used to apparently succesfully treat other neurodegenerative diseases, especially multiple sclerosis. I think it was Dr. Bihari who originally suggested its use in slowing PD symptom progression.

I made the DM-Naltrexone connection by reading some research published in 2003 by a group at the National Institutes of Environmental Health in Research Triangle, North Carolina. They discovered that three or four drugs of this class, including DM, were powerful inhibitors of inflammation of certain cells (microglia) in mouse midbrains which caused the loss of dopamine-dependent neurons when activated by bacterial lipopolysaccharide. This inflammation, gliosis, along with abnormal microscopic object called Lewy bodies, is a consistent feature of the substantia nigra and striatum in the basal ganglia of Parikinson's patients brains. The current thinking is that it is the inflammation generated in the microglial cells that is the cause of the loss of dopaminergic neurons typical of PD.

Because naltrexone requires a prescription and DM is sold over the counter, I started taking it at about the same dosage as used in LDN. As far as I can tell, and my wife, family and friends agree, I have progressed very little in the time since beginning its use. My Neuro is the Department Head of the medical school where I have recently retired as a biochemistry faculty member. He is aware of my use of DM, and is delighted with my present condition. My sinemet dosage has been increased from 300 to 450 mg per day in six years. This controls my symptoms with no dyskinesias.

I always caution others that the DM use is an experimental approach that I chose to follow, and do not recommend that anyone else use it.

Again, welcome.

Robert

[steffi 001]

How lovely to have you join us. Welcome.Firstly I wish to say how valuable it is to have carers on here.We get to see things from your angle and that is so valuable.We can pick up allsorts of info as to how carers cope with the various symptoms of this condition...the succesful strategies and the ones to avoid...you know,like if the pwp is having a down day,which works best,genntle wpords of encouragement or walloping them with a house brick
Anyhow,Q10. I tried it [am in 10th year of diagnosis,and I was advised to buy the purest form available.I took 10 tablets a day and felt like leaping ove r 9 hedges...and I was alert at night,so had difficulty slereping. Slereping.[Bet you all are dying to know what THAT means hey? It sounds a heap of fun.
But I live in England and it was costing me £70.00 pluds...PLUS!!! Oh heck,am leaving the the typing eerrors in...a few more sentences and I`lol have a whole new language to launch.We could call it the PARKINSONS TWANG.

Then we could all go TWANGING to our hearts content.
Q10 and TWANGING. Now there`s a combination.

Seriously,if I could afford it I would be back on it.

Not much help but then again,I never am.
Hoping you enjoy it here.

Steffi
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