I've been diagnosed 2 yrs. Some days I shake more than others, then some days it's as though I don't have PD. Anyone else experience this?

[Babygirl]

Also, has anyone experienced lack of energy?

[maryalice]

I've experienced both. The tremor usually get worse when I'm stressed out. It can actually be almost nonexistent when I'm relaxed. I think lack of energy goes along with the disease.

Exercise is supposed to help, I take CoQ10 and it seems to help with lack of energy. Hang in there. Blessings.

[Dennis in reply to maryalice]

I do the same...CoQ10 and my regular parkinson medications.

[tlongmire in reply to Dennis]

What brand?

[Susie01 in reply to tlongmire]

I use a form of CoQ10, ubiquinol, is suppose to be more more absorbable, especially for those of us over 50. I use an online site, swansonvitamins.com.

[tlongmire in reply to Susie01]

How many mg per day, what time? How do you think they benefit you?

[Susie01 in reply to tlongmire]

I myself take 300 mg per day, that is what was used in studies. I notice some are taking a lot more. I have found that I have less of a problem with word finding and am not in a fog as often (after longterm usage).

[JennyR in reply to maryalice]

Wouldn't miss a day of CoQ10, plus all Parkinson's meds. No tremor ever, but the

constant exhaustion meant increasing my CoQ to 800 to 1,000 mg. per day. If stress is present I'll even increase to 1,200 mg. per day. It is expensive, but well worth the price to feel symptom free. Thyroid meds also helped. Good luck

[Bitbit]

Yes. Many days I feel normal and decide I must be crazy to think I ever had PD. but then I get stressed and it is back. When I feel normal, which is a lot, I wonder if they made a mistake since it is a clinical diagnosis at first.

[Bitbit in reply to Bitbit]

Oh yea, coq10 is a daily for me and I do believe it helps. And I am exhausted most of the time.

[tlongmire in reply to Bitbit]

What brand?

[maryalice in reply to tlongmire]

Tiongmire, The brand of CoQ10 is Vitaline CoQ10 300. Their phone number is 1-800-287-5972. and their website is coque10.com

It says to take 4 a day. They are expensive, but worth it. Blessings.

[kkamegranny in reply to Bitbit]

I feel that way too. If I'm tired or stressed the tremors are worse.

[Kadie57 in reply to Bitbit]

This happens in the early progression of Parkinson, but if you feel or wonder PD is not what you have, get tested for Lymes disease, this tick disease mimics Parkinson, I had this happen to me, but mine wasn't caught early and I had muscle damage, thus this moved into Parkinson. Some doctors don't believe in the Lymes disease but I know it happens and my nueros at the UW WISCONSIN Movement and Disopder clinic verified this. ALSO Insurance does not like the term PARKINSONISM "ISM" means of an unknown origin So my insurance fought paying but when UW removed the "ISM" to just Parkinson then they payed the bilds, Hope this helps, and I pray you don;t have PD, you can be one of the lucky ones! God bless, Kadie (P.S, What is normal?? I thought was Garfield the cat's cousin LOL)

[Hidden]

I feel better on days when the weather is decent, I feel rotton if stressed which I think is common to us all with PD, but I suppose we all have out off and on days

[fishinggirl]

I tremor more when stressed also. I've been diagnosed for almost 6 years. These symptoms all sound familiar and you will get used to them. Try different advice, educate yourself, and find what works for you. But on different days you feel different even with the same meds. Hopefully, your life will let you be flexible on "bad" days, you're going to need it. I have difficulty, especially on days I am coming down with something or have an infection. Wishing you the best...

[Court]

That is just how I am. I was diagnosed 7 years ago. Some days feel fine, others medication does not seem to kick in and I can tremor all day, sometimes even for a few days and then wham I am back on track again.

Can't find any reason for this radical change, think it must go with the territory.

[honeycombe3]

I can only echo all the above. After nearly 9 yrs dxd I have days when folk say they can't tell I have PD (fewer & fewer) and days of tremor etc which are much more frequent. I can't or am not able to go out when I'm bad so many see me only when I'm well which is confusing for them. If we could bottle the good days to use as needed we'd have found a partial cure. Unfortunately we can't. PD is a bugger!! (Pardon me).

[Court in reply to honeycombe3]

I seem to be having fewer and fewer good days and more and more of the bad days. My good and bad days can last for a few. I am having about my 4th bad day in a row and am sick to death of them. I see the Consultant next week in the hope that my meds might need adjusting. Cannot face the other alternative. It is so hard to be strong.

[tlongmire in reply to Court]

Yes, it is hard to be strong all the time, in fact, it's damn near impossible. We just have to try as hard as we can. For me my weight is a big stressor. Must get that under control and perhaps I'd have more really good days.

[Court in reply to tlongmire]

How is the weight going, or not, as the case may be? Mine just won't shift. Have been trying and exercising as well. Am convinced it is the Stalevo.

Sue

[tlongmire in reply to Court]

I've lost about five hard fought pounds. I need to lose 40 more to get back in the acceptable weight range for my height. I hope I don't have to wait until pigs fly to achieve it!

[kkamegranny in reply to tlongmire]

I need to lose too. Maybe we need a support group for that! My neuro suggested Weight watchers and I'm thinking about joining. I have at least 40 to lose!

[tlongmire in reply to kkamegranny]

That sounds good. I actually joined weight watchers a few weeks ago. But I've been sick with a cold sinus thing and Monday I got shingles, so I haven't been to a meeting or working the plan. But I have managed to keep off what I lost.

[Walhalla50 in reply to honeycombe3]

I relate to this comment and I have PD for 8 years. Most people see me when I am normal and are generally surprised when I tell them I have P D. When I am stressed I am a mess. Sometimes I am a mess and I find the best way to minimize the down times is to understand the effect of the medications with the food you eat and take the medication when you need it and not at a fixed ti e every day.

[mistydog1]

Thank you all for a piece of mind ! I too was diagnosed recently and traveled down the path that the doctor had it wrong ! Then a stress day pops up or the cold weather and I know doc was right. I only have tremors on the leftside so I take Sinemet every 3 hrs. When I take the medicine I experience painful trembling for the first hour does anyone else have this issue? . I'm going to have to try the CoQ10

[PatV in reply to mistydog1]

Me too. I don't have tremor only stiffness. And the first neurologist said I couldn't have PD because of no tremor. My stiffness is worse right after meds. I tried CoQ10 didn't notice any diff. Will retry!

[etterus]

I also had extreme fluctuations at times thinking I was more of a psych case than PD... after 8 yrs had a DAT scan that confirmed PD.

[finlander]

It's enlightening to see that so many of us are the same. Some days, I feel Parkinsons free and I harbor this silly hope that I am cured. Then I get hit with a bad day and reality sinks in. But, believe it or not I can make myself feel "normal" on the bad days. On those days, I make sure to get a good work. Even though I don't want to do it and don't feel capable of doing it, I force myself to go. I start slow and easy but always manage to eventually work up a good sweat. I take a good hot shower, get dressed and wow, as I leave, I feel alert, clear-headed, refreshed, alive, and NORMAL. It's great.

[finlander]

And now, if I could only figure out how to make it last. After a number of hours and especially when something stressful occurs, the shakes and tremors return. My normal walking returns to feeling like I am trying to walk through sand. I feel clumsy. And I feel so self-conscious when I am in a crowd. But, I'll take what I can get.

[kkamegranny in reply to finlander]

Balance and falling are an issue for me. I'm afraid to walk outside the house for fear of falling. I trip over any little crack, etc,

[Dextor in reply to kkamegranny]

Use a walking stick. It protects you from falling and it makes you stand up straight so you don't look like an old lady.

[Susie01]

Again, echo of the above. There are days I do fine and other days that I can hardly speak and my brain is very cloudy. If I look closely, my left hand has tremors most of the time, but they are not nearly what they were prior to starting on azilect. My left foot drag is worse when I am tired. Some days I feel like my old self and will go at 100%, then I am in bed the next day.

Just a note on the CoQ10, if you are over 40, your body may not have what it needs to process regular CoQ10. I take it in the form of ubiquinol which is suppose to be easier to absorb. I have a good friend who is very up on natural medicine, the site he recommends is Swansonvitamins.com. Prices are pretty reasonable and the quaility and educational support seems better than most sites. They also have the mucuna which was written about earlier this week in a capsular form, though it says not to use if you take an MAO Inhibiter, which Azilect is.

I am curious how different people came up with dosage amounts. The studies I had read were for 300 mg. which is what I take. Were larger doses recommended?

[maryalice in reply to Susie01]

Susieo,

The brand of CoQ10 is Vitaline CoQ10 300. Their phone number is 1-800-287-5972. and their website is coque10.com

It's a waffer that you chew, They recommend 4 waffers a day,which is 1200mg a day. Blessings.

[Court]

I have found it reassuring that so many people feel as I do. No one tells you that you may feel like this. I, too, have thought it has gone away, as if. I never stay in bed, but try to carry on as normally as possible. Some days I get no relief from the tremor, even the silent ones. Am just grateful that, for now, I am still having some, if less, good days.

[fishinggirl]

Some mornings I can go until 9 or 10 before I feel the need for any meds, just feel great and normal. Some days I take them early and don't feel the need coming on for more until 4 pm. I'm just don't need to take them right on the dot of time, like 8,12, 4, etc. and it has worked for a long time. But today I need them soon so I better sign off........

[Percy-Parkie]

HI,, I have notice this with my Hubby although we have only known since December what was really wrong with him, He is very good at telling people he is a lot better when the shaking is not so apparent. He is a lot more tired than he used to be so it maybe that he too would be ok on CoQ10 but he is 63 so will have to research better sorts for him.

Thanks for info everyone.

[Dextor]

Yes. I find if I brace my arm the shaking shows less.