Co Q10

[Garysimmons464@talktalk.n]

My wife was suffering depression due to her PD problems so I decided that after discussion with our PD consultant that it would be worthwhile trying Co Q10 supplementation.To date we have increased her daily intake to 600mg and my wife and I are convinced that this is proving very beneficial to her wellbeing and may even be helping slown down the PD progression.Does any body else have any experience of Co Q10 and whether they have found any benefit? Any body have any comments on daily dosage as I believe very high levels can be taken but might there may be a reduction in benefit if dosage is increased too quickly giving a situation where there is eventualy nowhere to progress?

[barbaraw51]

I have been taking 1,200 mg of CoQ10 for three years. There is already research showing it slows the progression. I believe there is a new study in Chicago on the benefits of 1,800 mg a day.

[Pauline]

Hi please excuse my stupidity but I would really like to know what Co Q10 is and where can you get it or is it prescribed by you Doctor :):):)Pauline

[barbaraw51]

Not stupid. CoQ10 is a nutritional supplement you can purchase at any health food store, Sam's Club, pharmacy. No prescription necessary. I talked to my neurologist about brands. She said a research study was done and there is basically no difference tween brands. My husband (a health nut) disagrees with her. The only reason I know about this is my husband has been a health nut for 40 years. He started on antioxidants back then. He is 70 and looks like he's 50.

[Pauline]

Thank you Barbra I'm going to give it a try I have been looking for alternatives methods in stead of all this medication (lolo maybe it will make me look younger ) well all kidding aside thank you smiles your way :):):)Pauline

[MargieB]

Dear Pauline, It's early Sunday morning here in Queens. I just opened the Forum a little bit ago. I wrote you and Heather earlier this evening but I think I goofed and the posts didn't go through. Please let me know if you got my 2 posts. This one and the earlier one. :confused:

My computer has been out for a time. My son Chris was able to fix what was wrong but it is still not right. I'm so glad I'm back in the Forum.

Tony is really having a hard time. He is so good but he is quite stubborn. His internist had told him to use a cane and wrote a prescription for him to get a walker but he refuses both. I had bought two canes but not the walker. The neurologist said if Tony isn't going to use it, it isn't going to do him any good.

I can just imagine how Tony feels. He doesn't talk about his PD to anyone, including me. There are very few exceptions when he opens up and mentions one or two things and then nothing. I only know what I read and guess at and what the doctors say. That' why having you and the Forum means so much to me.

If you get several of these posts don't think I've gone bonkers. I'm not. My computer is still acting up and the fact that it is 3:13 am and my eyes are closing on me is another reason why I better sign off and get to bed.

It's so good to have you to talk with :):).

Good night for now, or should I say: Have a really good day!

With love,

Margie

[Pauline]

Glad to hear from you I was a bit concerned when I didn"t see any posts from you I know it is a very trying time for you , sorry Tony is having such a hard time It is hard to give up your independence I think in time he will come to realise it is for the best It just takes us time to wrap our brain around , just go slow I think he will come around I think it is a bit of give up that little bit of independence and pride I am just going by how I feel we all know it is coming but we try to hang on as long as possible but it must be so hard for you , to stand by and not be able to do much so I don't have any magic words but we are all here for you smiles your way :):):)Pauline Hope you got some sleep

[MargieB]

Hi Pauline,

I did find your letter to me under CoQ10 Garry Simmons Forum. You are so sweet being concerned when you didn't see any posts from me. It brought tears to my eyes. Not sad tears but tears of happiness that I have made a friend who not only understands but cares. God Bless You.

Your words of advising me that you think in time Tony will come to realise that using the aids the doctors prescribed for him and he will come around make a lot of sense. He has had to give up much of his independence. One of the biggest ones is writing. He has been an editor for the same company for 53 years. Being an editor means a lot of writing, which he can no longer do at all. Our son Chris has devised a system that Tony is able to use so that he can still do minimal editorial work. This work is very beneficial so far. It keeps his mind occupied and the doctors told us it is excellent therapy and to keep on doing it for as long as he can. He also enjoyed driving and misses that so much. He always told me it always relaxed him to drive.

My husband has always been very self motivated and independent. You got me to thinking about that, his independence and pride. You're right we (PD patients and their carers) all know what is coming but we try to hang on. But maybe what we think is coming is not fact at all. Just maybe our thoughts provide worse scenarios than what will actually be. I know I think negative sometimes but that doesn't get me or anyone else anywhere. Positiveness, laughter and a sense of humor does much to help me and those around me, so I'm going to keep those going. Will you join me?

Maybe that new medication due next year will be a God send for all PD patients. Let's pray that it will be. Don't know the name. One of our doctors told us about the fact it is due next year but didn't tell us the name.

Yes, I wish and hope that I could do much more than I do. But Tony reassures me that I do good.

You don't need any magic words dear Pauline. Just knowing that you and everyone else on the Forum are here for me is so comforting and helpful.

Yes, I finally went to sleep around 4:30 am :) Zzzzzzzzzzz.

Bye for now.

Smiles to you and John :):)

Margie

[MargieB]

Hi please excuse my stupidity but I would really like to know what Co Q10 is and where can you get it or is it prescribed by you Doctor Pauline

Hi Pauline,

Margie here ;). Tony's neurologist put him on CoQ10 and it is of great help. It is an over the counter product that can be purchased in almost any drug stores. There are quite a few brands out there but I don't think it makes any difference which one you choose. If you have a regular pharmacy that you go to, you could ask the pharmacist which one would be best for you. Or if you feel more comfortable asking your doctor, do that.

Good luck with it!

Hugs and Smiles

Margie

[bruce]

Hi Pauline,

I did find your letter to me under CoQ10 Garry Simmons Forum. You are so sweet being concerned when you didn't see any posts from me. It brought tears to my eyes. Not sad tears but tears of happiness that I have made a friend who not only understands but cares. God Bless You.

Your words of advising me that you think in time Tony will come to realise that using the aids the doctors prescribed for him and he will come around make a lot of sense. He has had to give up much of his independence. One of the biggest ones is writing. He has been an editor for the same company for 53 years. Being an editor means a lot of writing, which he can no longer do at all. Our son Chris has devised a system that Tony is able to use so that he can still do minimal editorial work. This work is very beneficial so far. It keeps his mind occupied and the doctors told us it is excellent therapy and to keep on doing it for as long as he can. He also enjoyed driving and misses that so much. He always told me it always relaxed him to drive.

My husband has always been very self motivated and independent. You got me to thinking about that, his independence and pride. You're right we (PD patients and their carers) all know what is coming but we try to hang on. But maybe what we think is coming is not fact at all. Just maybe our thoughts provide worse scenarios than what will actually be. I know I think negative sometimes but that doesn't get me or anyone else anywhere. Positiveness, laughter and a sense of humor does much to help me and those around me, so I'm going to keep those going. Will you join me?

Maybe that new medication due next year will be a God send for all PD patients. Let's pray that it will be. Don't know the name. One of our doctors told us about the fact it is due next year but didn't tell us the name.

Yes, I wish and hope that I could do much more than I do. But Tony reassures me that I do good.

You don't need any magic words dear Pauline. Just knowing that you and everyone else on the Forum are here for me is so comforting and helpful.

Yes, I finally went to sleep around 4:30 am :) Zzzzzzzzzzz.

Bye for now.

Smiles to you and John :):)

Margie
I completely understand your husbands resistance to giving up hbis indep-endence. I finally gave into 2 canes and then a one arm crutch. They have helped me so much with my balance and I am really more independant than I was without them. We all have negative,frightening thoughts but as you say we must keep our sense of Humor and upbeat feelings. Give him time and he will realize that he needs an extra leg.bruce

[MargieB]

Hi Bruce,

Thank you for your encouraging words. Yes, I will give Tony the time he needs to realize he needs an "extra leg". I, myself, don't like to be pushed into something before I am ready to receive it. It it applies to me, I should understand even more why Tony needs time.

Your sharing is so appreciated.

I hope you are having a good day.

Margie

[Juanita Mullin]

I am not taking any medications but am using 1200 mg of CoQ10 daily--(the amount stated in 2 of the PD books I read and also in some periodicals) I believe it has been helpful to me.

[Garysimmons464@talktalk.n]

:)Hi Juanita,
Do you find the CoQ10 helps your energy levels or has it slowed down the PD development.How long have you been taking 1200mg and how do you take it ie 1 dose /day or split dosage at regular/irregular intervals during the day.
Best Wishes -Gary

[Gail]

Not stupid. CoQ10 is a nutritional supplement you can purchase at any health food store, Sam's Club, pharmacy. No prescription necessary. I talked to my neurologist about brands. She said a research study was done and there is basically no difference tween brands. My husband (a health nut) disagrees with her. The only reason I know about this is my husband has been a health nut for 40 years. He started on antioxidants back then. He is 70 and looks like he's 50.
Which brand does your husband say is best? I take 1,200 mg a day and buy the Vitaline Coq10 through the mail. It costs $200 a month, which seems a bit pricey.

[LoisK]

My wife was suffering depression due to her PD problems so I decided that after discussion with our PD consultant that it would be worthwhile trying Co Q10 supplementation.To date we have increased her daily intake to 600mg and my wife and I are convinced that this is proving very beneficial to her wellbeing and may even be helping slown down the PD progression.Does any body else have any experience of Co Q10 and whether they have found any benefit? Any body have any comments on daily dosage as I believe very high levels can be taken but might there may be a reduction in benefit if dosage is increased too quickly giving a situation where there is eventualy nowhere to progress?

Hi Gary, I started taking CoQ10 about 3 months ago, My neurologist told me it would'n hurt and might help. If nothing else Co Q10 is good for a lot of other things. I take 1200 mg daily and use the Vitaline Brand, 300 mg maple nut flavor. Large but easy to chew and the taste is not bad. I believe it helps.Vialine is the brand used in the trials. wwwvitalinecoq10.com. I for one would jump out of an airplane if it would help.
Lois

[Garysimmons464@talktalk.n]

Hi Lois ,
Thanks for comments-PLEASE DONT JUMP-I couldn,t guarantee
to catch you
ps How much do you weigh?
love -Gary

[Garysimmons464@talktalk.n]

Hi Gail,
I have found that the best price for CoQ10 is from PURITANS PRIDE based in the USA.They are easily found on the internet
Best Wishes -Gary

[suzie Q]

I have just bought CO Q10 so have only just started them.will be interesting to see if I notice any difference.

Sue

[Gail]

Hi Gail,
I have found that the best price for CoQ10 is from PURITANS PRIDE based in the USA.They are easily found on the internet
Best Wishes -Gary
Hi Gary,Thanks for the information. I have been taking the CoQ10 for 2 years. I don't know if it helps slow the progression of PD, but I take it anyway. just in case it does. Gail

[heather]

Hi I keep reading this, and find it more and more interesting
being only a carer, and Jim only ever been on sinimet plus,i don't no anything about medication, and not quiet sure what co Q10 does/for
I was wondering, as you do,,
Jim is in the latter stage of 5, and gets very low, and keeps getting infections in his peg site, , His doctor says his heart is as strong as a ox his blood pressure is stable on medication , and his lungs are good considering he does occasionally aspirate,he does have 2,000 grms vitamin C and the doctor thinks this is helping him not to catch chest infections
do you think it will help him

[suzie Q]

Heather CoQ10 is apowerful antioxidant.It may increase stamina and endurance.assist brain function.helps restore good health and promotes healthy aging.there has been a lot of information saying it is good for parkinson disease.I have only just started taking it you never know .Someone else on the forum might be able to tell you more about it.Have a look at Bruce's posts I think he talked about it.


Sue

[heather]

Thank you Sue
i will check
it just sounds very interesting,and i don't think it can do any harm

[mappergal]

Walgreen's has buy one get one free on their brand of CO Q10 about once a month. I buy the 90 count 200mg for $50.00 and get the other for free. It is the best deal I have found.

I started using a cane 2 weeks ago after my second incident of falling face first on the sidewalk, now having broke all 4 front incisors. I now have veneers. I would rather use a cane then fall like that again--I can't afford it physically and mentally.

I fall because I forget to walk heel to toe and if I trip, I can't move fast enough to break my fall. I don't know if this will help your husband by sharing but I have to get over my vanity and do what's right for me.

Liz

[heather]

Thanks Liz

It was after Jim fell in Town, and cut his face, that he swallowed his pride and used a stick
It has been Bank holiday hear so our chemist has been closed since Friday till today, so i will try and pop in tomorrow and see if he can get me some.other wise i will get on the internet and have a look

[Paulie]

Hi Gary I have been taking coenzyme Q10 for about 12 years. I was told it was good for people with Parkinson's. My Parkinson's has been very slow progressing. I think the Q10 has helped. I did not take the recommended dosage as it was very expensive. I took what I was able. I recently had a talk with a health food store owner and he informed me that some Q10's are a purer(?) quality so you don't need as much.

I find that whenever you mention a holistic approach to one's ilness the MD seem to try and discourage you.
Good luck
Paulette

[dlmarcoux]

Hi Paulette You said that you have been taking CQ10 for some years when you started did you take the full 1200 or did you graduate up to that amount?

Doris:)

[heather]

Hi
I have been in contact with my chemist , who is going to look into CoQ10, he thinks Jim may be to advanced to do any think
but will see if it could help, he didn't seem to no much about it

[Juanita Mullin]

:)Hi Juanita,
Do you find the CoQ10 helps your energy levels or has it slowed down the PD development.How long have you been taking 1200mg and how do you take it ie 1 dose /day or split dosage at regular/irregular intervals during the day.
Best Wishes -Gary

Hi Gary, My apoligies for being so slow getting back to you. I don't know my way around this forum very well and just discovered your note. I take 400 mg with each meal. I have heard that absorption is better by taking things in smaller doses than one big one. I have been taking it since February. My tremors are not as bad and my walking is better. My energy level is not what I'd like but is better than it was. I definitely feel it has been helpful for me.

[Juanita Mullin]

Hi Gail,
I have found that the best price for CoQ10 is from PURITANS PRIDE based in the USA.They are easily found on the internet
Best Wishes -Gary

I have been getting the CoQ10 from SWANSONS VITAMINS. swansons.vitamins.com So far the 400 mg. has been on sale every month so taking 1200 mg has cost me around $50 a month.
Blessings on all of you
Juanita

[Gail]

I have been getting the CoQ10 from SWANSONS VITAMINS. swansons.vitamins.com So far the 400 mg. has been on sale every month so taking 1200 mg has cost me around $50 a month.
Blessings on all of you
JuanitaThanks, I will start shopping around. The vitaline brand is just too expensive. Gail

[mappergal]

Hi, I know I wrote this before but Walgreens' sells a 90 count of 200mg for $49.00 but at least one week a month, sometimes more often, they sell the COQ10 with buy one and get one free. This way I get 180 200mg for $50.00 -- a one month supply. Here in the US Walgreens is everywhere and also on the internet.

[mappergal]

I have read that some COQ10's are better or more pure but I have also read that there is no difference. Mostly the people saying there is a difference are the people selling the higher priced supplements. I know I do better when I am consistent with taking my 1200 mg, I break mine into 2 times a day, but have been told 3 times is better. I can afford the Walgreen's pills and they appear to work for me. I have no stock in the company, I used to work for a different drug store chain while going to college, they just have good prices.

[JD2008]

Dear Pauline, It's early Sunday morning here in Queens. I just opened the Forum a little bit ago. I wrote you and Heather earlier this evening but I think I goofed and the posts didn't go through. Please let me know if you got my 2 posts. This one and the earlier one. :confused:

My computer has been out for a time. My son Chris was able to fix what was wrong but it is still not right. I'm so glad I'm back in the Forum.

Tony is really having a hard time. He is so good but he is quite stubborn. His internist had told him to use a cane and wrote a prescription for him to get a walker but he refuses both. I had bought two canes but not the walker. The neurologist said if Tony isn't going to use it, it isn't going to do him any good.

I can just imagine how Tony feels. He doesn't talk about his PD to anyone, including me. There are very few exceptions when he opens up and mentions one or two things and then nothing. I only know what I read and guess at and what the doctors say. That' why having you and the Forum means so much to me.

If you get several of these posts don't think I've gone bonkers. I'm not. My computer is still acting up and the fact that it is 3:13 am and my eyes are closing on me is another reason why I better sign off and get to bed.

It's so good to have you to talk with :):).

Good night for now, or should I say: Have a really good day!

With love,

Margie

Margie - Jennifer here. I use walking sticks for hiking - from Italy and telescopic. It's getting to be quite trendy! My husband got some too (he doesn't have PD) and we do a brisk walk around the park behind our house. Keeps you upright and no chance of falling. I highly recommend them!

[Gail]

I have read that some COQ10's are better or more pure but I have also read that there is no difference. Mostly the people saying there is a difference are the people selling the higher priced supplements. I know I do better when I am consistent with taking my 1200 mg, I break mine into 2 times a day, but have been told 3 times is better. I can afford the Walgreen's pills and they appear to work for me. I have no stock in the company, I used to work for a different drug store chain while going to college, they just have good prices. I take all 1200 mg at one time. I wasn't sure how to break it down. I will try 3 times a day and see how it works. Gail

[MargieB]

Margie - Jennifer here. I use walking sticks for hiking - from Italy and telescopic. It's getting to be quite trendy! My husband got some too (he doesn't have PD) and we do a brisk walk around the park behind our house. Keeps you upright and no chance of falling. I highly recommend them!

Hi Jennifer,

Thank you for your help and caring. Maybe if I do what you and your husband are doing...both of you using walking sticks...Tony won't mind using one. I have never thought of this. It's so good of you to write me.

Tony has fallen several times outside and in the house. Thank God he was not hurt badly.

Hope you and your husband have a good day tomorrow.

Looking forward to talking with you again sometime.

Margie :)

[Leggs]

Hi Gary, I appreciate this post. I have heard about CoQ10 and also want to ask if you have used Frankinsence???

Or anybody else here?

[Gail]

I havve never heard of using Frankincense. I have been searching the internet and only found a bits of informatoin. What is the benefit of using Frankincense?

[Gail]

I have been surfing the net trying to find out about Frankinsence and came across curcumin. Does anyone take curcumin?

[Leggs]

Hi Gail and all:

It's been awhile since I came on line.
Thank you (Gail) for your posting to my question about Frankinsencse...My husband used it for awhile. However, he finallly took his first dose of Requip about 10 minutes ago.

He is not yet open to using this forum. (I have a forum that I love for being smokefree (niccotine) a great support.

Anyway, until I get familiar with this blog..

Does anyone here use/have a personal "chart" where they monitor their progress with a new medication?

I mean ` outside of a personal journal, If that's the case, what do you watch for?

So far, we have "on a scale of 1-10" dizziness and time of day.


He is really tired and kind of crabby tonight. Have not seen him this way...kind of sad.

[Pauline]

:)Hi I started taking CO Q10 120 mg about 6 and the last 2weeks I have noticed a big improvment I am more alert I can concentrate better and not as Fatiqued witch is a big plus and I really beleive it is from taking CO Q10 when I first started taking it I was very skeptical but it has one me over :DPauline

[DAH]

This is my first reply to the forum. I'm Dottie and my husband is Al. Al was diagnosed with PD two years ago. I did some research and spoke to our neurologist about the CoQ10. He said it would be good to try. He has been taking 1200mg per day. 400mg. 3x/day. He is taking Mirapex 1mg 3x/day and just started a small dose of sinimet. He is doing well. We buy our CoQ10 400mg. capsules at the CVS Pharmacy;the Nature Bounty Brand buy one get one free. They have the sale about once a month. I don't know if this will help others. Does anybody know about the creatine study or is taking Creatine for their PD? It was suggested to us by the neurologist on our last visit. He had no idea of the dose, but said it is showing good results. I know a trial has been going since 2007 and will continue for three more years. I hesitate to take him off the CoQ10 and won't until I hear more of what this creatine does and any untoward effects.

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/Welcomedottie.gif
I'm Heather and a carer for my husband Jim
he has a illness that mimics PD, and no medication works, so i don't feel I am able to comment on medication, but there are a lot hear, who will be glad to help you

I think you are very wise not to change Al medication, until you are sure
like the old says goes
"if it's not broken don't mend it"

[Juanita Mullin]

Hi DAH,
I, also take CoQ10, 1200 mg, 400 mg 3x a day. And creatine. I have been taking it for several months. No ill affects with either of them. Juanita :)

[DAH]

Hi DAH,
I, also take CoQ10, 1200 mg, 400 mg 3x a day. And creatine. I have been taking it for several months. No ill affects with either of them. Juanita :)

:) Appreciate your response. Do you take any other medication along with the CoQ10 and the creatine. Al's neurologist thought he could try the Creatine instead of the CoQ10 since it is having such good results in the study. Are you involved in the study. I'm thinking of calling the Primary Study Sight in Rochester,NY. How much do you take of the Creatine per day and how do you take it. My research states it is supervised by the hospitals involved. Some take a placebo and some get the creatine. I wish our neurologist had given us more info. As I find out more info I will let others know. Gosh it's great having someone to talk to who understands. God Bless. Dottie

[heather]

Hi Dottie and Juanita
hope all goes well, you will find lot's like Juanita on hear who can help
please keep us up dated

[DAH]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/Welcomedottie.gif
I'm Heather and a carer for my husband Jim
he has a illness that mimics PD, and no medication works, so i don't feel I am able to comment on medication, but there are a lot hear, who will be glad to help you

I think you are very wise not to change Al medication, until you are sure
like the old says goes
"if it's not broken don't mend it"


Thanks Heather for your note of confidence. I appreciated that angel picture too. I'm new at this and don't know if I'm doing it right. My motto is nothing ventured nothing gained.

[suzie Q]

This is my first reply to the forum. I'm Dottie and my husband is Al. Al was diagnosed with PD two years ago. I did some research and spoke to our neurologist about the CoQ10. He said it would be good to try. He has been taking 1200mg per day. 400mg. 3x/day. He is taking Mirapex 1mg 3x/day and just started a small dose of sinimet. He is doing well. We buy our CoQ10 400mg. capsules at the CVS Pharmacy;the Nature Bounty Brand buy one get one free. They have the sale about once a month. I don't know if this will help others. Does anybody know about the creatine study or is taking Creatine for their PD? It was suggested to us by the neurologist on our last visit. He had no idea of the dose, but said it is showing good results. I know a trial has been going since 2007 and will continue for three more years. I hesitate to take him off the CoQ10 and won't until I hear more of what this creatine does and any untoward effects.

Hi Dotti welcome to the forum i am sue i am 53 and have had p.d for 6 years hope you enjoy the forum it is great to be able to talk to others in similar situations talk soon

Sue

[heather]

Thanks Heather for your note of confidence. I appreciated that angel picture too. I'm new at this and don't know if I'm doing it right. My motto is nothing ventured nothing gained.


Hi Dottie
love your motto, we all have to start at the begining
once you look around the site you will find it easy, we do often go off track sometimes:D, but that show how relaxed and happy we all are on hear
I find by goind to the top of the page and click on {quick links}, then on today posts, and can do changes if need be also the top left click on Parkinsons Disease ForumThis will take you quickly to the homepage, where you will find everything
hope this helps, look forward to lot's of posting :)

[Juanita Mullin]

Hi Dottie,
I'm copying an article from Dr. Julian Whitaker in the Health and Wellness newsletter, October 2007

"In January of this year, researchers from Duke University conducted a 16-month placebo-controlled study of 80 patients with mild Parkinson's disease. The study subjects taking 1,200 mg of coenzyme Q10 (CoQ10) daily had dramatic slowing of functional deterioration.

"Another supplement that shows real promise is creatine. Known mostly in body-building circles, creatine helps regenerate stores of adenosine triphosphate (ATPE), the 'fuel' that powers the mitochondria in all of our cells. Research suggests that creatine boosts energy in nerve cells in the brain, offering better protection against damage or destruction. It has also been shown to improve mood in patients with PD...The suggested dose of creatine is 10g per day." Someplace I read that we should use the Creatine Monohydrate. I found it in powder form at Swanson's Vitamins--you can find them on the internet--reputable and honest--good to deal with. Also where I purchase my CoQ10. So far it has been on sale every month when I go to order it--I suspect you live in the States? Hope this answers your questions. Blessings on you and your husband. Juanita:):)

[mona47]

Juanita.l notice you are not on any medication.could l ask what are your symptoms and does the cq10 help?l take 1 azilect and 1 simenet 25/100 l have a tremor and move real slow and so far no help from either med?

[heather]

Juanita.l notice you are not on any medication.could l ask what are your symptoms and does the cq10 help?l take 1 azilect and 1 simenet 25/100 l have a tremor and move real slow and so far no help from either med?

I found when Jim could walk it was very slow, but no shaking,
so it was best of 2 evils, so we decided to stay on Sinimet and walk slow with a full cup of tea, and not 1/2 on the floor and walls, was best, I think and this is just my thought's, we have to weigh up which is the best, slow and sure we chose slow , the snail and the hair comes to mind

[Juanita Mullin]

Hi Mona,
I have quite a lot of tremors, slowness, (across the years I would try to get Jim to speed up when we were walking and in the last year or two I found him walking faster than I was. I thought he had speeded up, but no, I had slowed a lot and it takes me so long to do things.), balance is not good--these are the ones most dominant right now. There hasn't been a lot of progression since I started taking the CoQ10. I have an appointment with the neurologist on Monday. I wish there was someone around who works with a lot of PD patients. He told me he sees about a dozen a year is all. Juanita

[Margie2]

I found when Jim could walk it was very slow, but no shaking,
so it was best of 2 evils, so we decided to stay on Sinimet and walk slow with a full cup of tea, and not 1/2 on the floor and walls, was best, I think and this is just my thought's, we have to weigh up which is the best, slow and sure we chose slow , the snail and the hair comes to mind

Hi Heather,
In my impatience, especially when I am tired, I find that I try to 'hurry up' Tony. I get upset and he gets anxious and frustrated when I do this. What you wrote about the Snail and the hare made me think (very, very much). WHY THE RUSH!? I will try extra hard to let Tony do things at his own pace. I do things at my pace--why shouldn't he be given the same privilege?
Thanks Heather--you gave me a gift today. One that I will keep forever.
Margie http://i638.photobucket.com/albums/uu105/crystalgazer01/ANGELS/1377039x1xpkbsu2u1.gifA SPECIAL ANGEL TO BRIGHTEN YOUR DAY AND JIM'S TOO!

[heather]

Thank you my friend, that is lovely
what I do when Jim is on a slow day, is do a job on my to-do list
I find some days when i'm trying to feed him, and he is so slow, it makes him worse if i try to hurry him up.
so i will do something like, tidy a draw in the kitchen, or get my tea started, it is extra work for me, but at least i don't find myself shouting at him, and he eats all his food

[Margie2]

Thank you my friend, that is lovely
what I do when Jim is on a slow day, is do a job on my to-do list
I find some days when i'm trying to feed him, and he is so slow, it makes him worse if i try to hurry him up.
so i will do something like, tidy a draw in the kitchen, or get my tea started, it is extra work for me, but at least i don't find myself shouting at him, and he eats all his food


Dear Heather,
I just read your quote a few seconds ago. There are so many 'tricks' I can learn to do, like the one's you suggested up above. Yes, it is extra work but I bet I too won't find myself shouting at Tony.

For you dear Heather...http://img.photobucket.com/albums/v260/Firewoman/Other%20Artists%20Inspirational%20Pieces/Smile.gif
Margie2

[heather]

Thank you my friend

And you do get one of those to do jobs done

have you ever sat and though, is it Tony you are shouting at
or PD ? I often find when i'm shouting, it's at his illness, unless he is on a "i'm not going to do what you say" day
I am feeling very guilty today, as i was shouting at him yesterday, because he refused to eat, and told him it's choise , but he knows what will happen. this am he was worse, so I got the GP and he has a chest infection:(:(

[heather]

Thank you my friend

And you do get one of those to do jobs done

have you ever sat and though, is it Tony you are shouting at
or PD ? I often find when i'm shouting, it's at his illness, unless he is on a "i'm not going to do what you say" day
I am feeling very guilty today, as i was shouting at him yesterday, because he refused to eat, and told him it's choice , but he knows what will happen.

This am he was worse, so I got the GP and he has a chest infection:(:( so it was full apologies all round

http://i10.photobucket.com/albums/a126/maesisaf/Hugs0.jpg

[Margie2]

Hi Heather,

That hug felt so good! I used it up several times 'cause it was much needed. Right back at you dear friend.

I'm using green because it is supposed to stand for the color of hope. HOPE is potent when shared, which we do. So here's to our strength--today--tomorrow--always.

You hit the nail on the head. Yes, I am very angry at PD. I'm not a fighting person but if PD would be able to separate itself from Tony's body for just a minute I would want to hit it so hard that it would be pulverized into oblivion forever. That and all it's cohorts in other diseases. Just writing this I can feel my blood boil in anger against it. When I yell at Tony because he is just being stubborn...it is a much different kind of yelling than when I am so angry at PD. I keep trying to turn this anger into something positive. So far, I haven't succeeded. It seems that my anger toward PD is a safety mechanism that I use to let 'IT' know I will fight 'It' for Tony no matter what. I don't know, maybe that is not the reason. I'm searching my soul always for this anger. Someday it will come to me.

I would like to turn the anger around to such a powerful good that would benefit all. Maybe if I try hard enough and pray on it too...I will come close to my mark. I know you and my other dear friends will be right there along side of me. We share a common goal on this Forum...let's share some energy too and put it out there to win the war against PD (and in Jim's case his illness that mimicks PD) not just one battle...the WHOLE ENCHILADA :D!

http://i81.photobucket.com/albums/j231/countrycowgirl0701/goals.jpg


I hope the chest infection Jim has is a minor one and he is over it very soon. Tell him he and Tony can be buddies in crime to knock out PD and anything else that is ailing them.
With love, Margie

Thank you my friend

And you do get one of those to do jobs done

have you ever sat and though, is it Tony you are shouting at
or PD ? I often find when i'm shouting, it's at his illness, unless he is on a "i'm not going to do what you say" day
I am feeling very guilty today, as i was shouting at him yesterday, because he refused to eat, and told him it's choice , but he knows what will happen.

This am he was worse, so I got the GP and he has a chest infection:(:( so it was full apologies all round

http://i10.photobucket.com/albums/a126/maesisaf/Hugs0.jpg

[heather]

Hi Margie
hope you and Tony are on a good day

I find coming on hear and chatting been able to express my feelings, hopes and anger, is so good, to me it's letting Jim's illness know it's not going to get the better of us, it would be so easy to just sit down and bottle it all up, but then i feel I'm giving in
I decided today not to wash the living room floor today, and go and spend some time in the green house, when Jim was having a afternoon nap, the sun was shining, but the wind was chilly, it was so peaceful, and i got a lot of plants sorted/started ready for the summer


I have never heard of green being the color of hope
you learn something every day
thank you
http://i10.photobucket.com/albums/a126/maesisaf/friend009-1.gif

[Marie-Louise]

Hallo
Its my first time here.Have been diagnosed with parkinsons 2 months ago. I am trying all alternative medicine before taking medicine. I've read your comments with interest and went to get Co Q 10. All the tablets I could find have a max of 50gm Co Q10. Does this mean you are drinking between 20 and 30 tablets a day to get to your 1200mg?:confused: Btw I'm in South Africa.:)

[Garysimmons464@talktalk.n]

hi Marie-Louise
You can purchase the capsules up to 400mg.We live in England but find the cheapest by far are from the USA.
We purchase from the Puritans Pride website and find the best size is 200mg-it's easier to swallow .
Love Gary

[Marie-Louise]

Thanks Gary

[Mary]

Hi Gary
I have been reading all the Co Q10 notes do you purchase them direct from USA , are delivery charges expensive ? and does it work out cheaper to bulk buy or is there a shelf life date on them ? every had problems with customs over import?
Many thanks
Mary (Liverpool)
Gary as you are back online can you reply as still interested

[Patsy]

Hi Mary

You have just asked Gary all the question I was thinking of also. Hope he gets back to us with the answers

Patsy :):D

[Mary]

Hi Patsy
He is very good at replying.I have not tried it but will do so as it sounds really good.
Mary

[Juanita Mullin]

Hi to all of you wondering about the COQ 10--I purchase 400 mg from Swansons--I can't tell you about the charges for shipping out of the USA. They are good to deal with, good price also and prompt. Find them on the website. Juanita :):)

[Mary]

Thanks Juantia
As Gary already purchases interested to know shipping charges.Do you buy softgel or ordinary tablet form ,appears to be so many options on web site
Maryhttp://www.allaboutparkinsons.com/forum/images/icons/icon5.gif

[heather]

how lucky we are in the UK, most hings on prescription, [free for all in Wales] if have a illness like PD or you are pension age, low wage etc, England don't pay for anything

[Mary]

Heather
Are you thinking we could get CoQ10 on prescription?
Mary

[Juanita Mullin]

Mary,
I get the CoQ10 in capsule form. The company I get from has had a really great price the last 2 months--previously the price was much better than many places but now much cheaper. (I like that!)
Juanita :o:)

[Garysimmons464@talktalk.n]

Hi Gary
I have been reading all the Co Q10 notes do you purchase them direct from USA , are delivery charges expensive ? and does it work out cheaper to bulk buy or is there a shelf life date on them ? every had problems with customs over import?
Many thanks
Mary (Liverpool)
Gary as you are back online can you reply as still interested

Hi Mary
yes we buy direct from USA.We use the Puritans Pride website and invariably they offer huge discounts based on how much you order.eg Buy 2 get 3 free.I usually order 6/9 months supply at a time and the postage last time was about £15.The customs & Post Office charge adds a further £20 plus.If you total it all up it still is a fraction of the cost of buying in the UK.The service is excellent.We have never had a problem and have used Puritans for all our supplements at huge savings.Hope this helps-check them out and see what you think.
Love Gary

[Mary]

Gary and Juanita
Thank you both so very much for all the information I will let you know if improvement after taking CoQ10
Regards
Mary:):)

[heather]

Heather
Are you thinking we could get CoQ10 on prescription?
Mary
Hi Mary
yes I thought you could, or on a private prescription
What valuable information i have gained of this site, is unbelievable

[Gail]

I took Gary's advice and began ordering my CoQ10 and other vitamin supplements through Puritan's Pride about a year ago. He was right, the prices are much better than I had found anyplace else I had found.

Gail