Can you actually skip sinemet? When it wears off are you worse than you were before you started it?

Also I have no drive or motivation which I imagine is due to lack of dopamine - will sinemet help that?[/QUOTE]


P.S. i feel a general overall improvement and as yet the on/off boundary pretty fuzzy so the answer (so far) to your second question above is no! i am definitely better off overall.

answer to the third question is a big YES it does help with motivation however it doesn't change the fact that we are all subject to cycles and cycles within cycles

md

Hi,
because of getting a different dx first I went a long time unmedicated, reading your post you sounds just how i felt prior to going onto sinemet.

you will need to take you MDS's advice on this, but there are other things, bits of patient understanding that may be useful.......

you have gone a long time without meds, and your brain sounds like it is dopa starved!

trying to resist the temptation to go to a higher dose because of the relief of going on meds can be hard, you feel much better and with most medication you take more to have more effect, PD meds are not the same, you walk a tightrope and even the neuros are not sure of the difference between over and undermedication....my take is it is better to be slightly under rather than over.......

I did all the good things too, organic food, growing my own, supplements, herbs, chi king, acupuncture, and nothing really touched it in any lasting way...... but maybe it helped with the rest

whatever meds you decide on go gently with them all, our brains are sensitive......

exercise is proving for many to be very useful, combined with a medication route that does not act as a chemical cosh, but keeps you on a good middle path it may give you some of the energy you wish for, as well as some better time ahead......

i look back to before taking sinemet, and would not be in that place again..... so I guess it is still doing a fair job, even though it's not perfect.

Best wishes and remember there will always be someone here to share things if you need to.....

Sounds like you are ready for sinemet.Learning to manage it is the trick,and looks like you can get advice in that area from this site.I've been on sinemet for 14 years,and still fairly active.I miss one dose,and my condition becomes as you described facing.Wish you the best.Ed

Age is definitely a factor. If one is 70 years old, the decisions are relatively simple. Take the pill.

If one is 40, however, things are tougher. It becomes very important to buy time. Exercise. Caloric restriction.

In the long run, sinemet can be quite nasty and it is simply rational to minimize its effects.
Inflammation calls for low dose ibuprofen.
Antioxidants like those mentioned earlier.
Feed your mitochondria with carnitine.

Trixiedee,

This is one of the most difficult things in coming to terms with this disease. I remember being in quite an anxious state of mind when first diagnosed over feeling tethered to pills; I have always avoided even taking an aspirin as I feel that so many pharmaceuticals are developed with an "illness" to go along with it. The thought of being reliant on pills for as long as my liver might allow made me crazy and I do still have days where I ache for normalcy...but then have cosigned myself that this madness is now normal.

I just want to say that I am a mom too; I have a wonderful 16 month old...from that perspective I'd like to say that I agree Sinemet is the "safer" of the two drugs. It is the only mainstay treatment that has longevity going for it and it provides unparalleled symptom relief. I simply cannot fathom keeping up with my son without it.

I would recommend going really slowly with all this and to express your dislike of being on too many pills; my doctors have all respected that and will usually work to keep my med intake to a minimum. I have read that some do pretty well for awhile just taking more frequent half-doses of Sinemet and taking a whole pill only when needing to. Your neuro should definitely be game to help you maximize your quality of life with a minimal amount of meds.

It is scary to give in and feel like you are losing control by taking traditional meds, but you should not suffer. I imagine you also want to start focusing on enjoying time with your children, family, and friends, not how crappy you feel. Sounds like you are long overdue. On good days; and there are a few each week, I do not even think about PD, my pills, and feel my "old" self again.

Let us know how things work out for you!

Laura

another huge factor that plays on this scene for middle aged women is menopause, which, shares many pd sx such as fatigue, frozen shoulder, temperature fluctuations and anxiety. it felt to me like my brain did a "reboot" with menopause and i have wonder if some of my restored functions are a result of my hormonal balance going through the adjustments in concert with everything else

I have come to view health as a reflection of the sum total of all that we are instead of reducing cause and effect to singular events.

maybe pd is a process, a venue, which calls us to heal centuries of ancestral arrogance through our bodies..and also to heal our own hubris.

good night all
md

I am only 44...

too weak to exercise, already lost lots of weight so caloric restriction would be a bad idea.

Am about to tackle the mitochondria issue by following Terry Wahls diet - google her, although doubt I can follow it strictly.

Thanks everyone for your advice...

Trixiedee

I was 39 when I first noticed a tremor and 47 when I began sinemet and requip. At 57 now, I still function but it is a matter of constant monitoring and adjustment.

It sounds as though Dr. Wahls has it together.

"I had accepted that I was never going to walk again. I had accepted that there was no recovery—that the best I could hope for was to hold steady,” Wahls says. “Even when I was getting better, I didn’t let myself believe it would continue. It took six months of steady recovery to begin to think that maybe in a few years I might be close to normal.” <More>

"Never give up. Never surrender." Tim Allen, "Galaxy Quest"

If you go on medication as a younger person you may find you can regain your strength and coordination if you can get tailored advice (and even just using your own common sense)
I am seventy but since taking sinemet (standard med. for 70 yr olds like I was) for 18 months I have regained the fitness I had two or three years before.
I have taken up Nordic Walking which can be done at any level. It exercises the whole body and is good for your spine and for balance. Also yoga very good for stretching the muscles. Use it or lose it applies even more so to PWP - my personal pet theory is that your brain is constantly relearning to do things with less dopamine before the symptoms show up until there comes a point when it can't . I thought this before I was dx with PD but before then I harboured the idea that I might have a benign tumour pressing on part of my brain. I never told the doctor because the symptoms were something and nothing kind of things like a jerk of the hand as I applied lipstick. Even when I first reported my hand tremor there was little interest.

Dear Trixiedee
I was almost at same place as you are 2 months back: 4 years since diagnosis without medics (but I am 67). I take loads of supplements, exercise 2 hours a day diligently. I have energy and no movement complains except tremor, memory and speech problems.

However, I decided to start sinemet for the following reasons (This is purely my opinion):

1) I always believed that sinemet is toxic and may cause speeding of the progress of disease but lack of dopamine seems to lead to even worse deterioration. I was specially influenced by the research that claimed and presented the many roles of dopamine in our functioning including movement memory (or muscle memory). In other words: without dopamine we seem to forget how to move.

2) Overall experience of doctors (as they claim), indicates generally better performance of patients who started earlier on sinemet.

3) It is vital to be at best TODAY, because this will enable you to exercise body and brain. 'Use it or loose it' is the point in mind.

I encourage you to watch the discussions in following link which summarises the point of view of the medical establishment today regarding PD medics:

http://www.neuroconnection.net/

I also encourage you to follow in parallel to medics (if any) a rigorous regime of exercise, yoga, taichi, music, dance , etc.. and learn to find joy in life, as many of the PD veterans on this forum do.

Best of luck
Imad