Am at the point of giving up being med-free, which is the least of all evils?
 

I'm at the end off my tether with this dis-ease, this week I was due to take my kids away for a camping trip - our first holiday since I split from their dad 4 yeaars ago, but had to cancel because I'm too weak to walk any distance. I can just about drag myself around my house but that's my limit. I'm sick of life passing me by, I can barely hold myself up to type this. I am taking bucketloads of supplements, eating a very healthy diet, doing yoga, having acupuncture, craniosacral therapy, massage, counselling etc but am still sliding down. I am so tired all the time that I have no energy for exercise except very gentle yoga (but get high as a kite when i'm yogaing).

So I'm thinking seriously about starting meds - I can find very few positive stories about DAs so Sinemet seems to be the best bet. Am I right in thinking that it is possible to keep it on a low dose and keep that dreaded dyskinesia at bay for longer? Any advice would be gratefully received.

Aaaarghhhh!!!

Trixiedee

if you want an opinion from a non-medical professional:
everyone is unique, you have nothing to lose trying agonists, you'll know pretty quickly if you like them. you can try azilect or selegilene as a monotherapy. if those don't work then you have sinemet. i was in heaven after my 1st sinemet. since then, i have gotten a lot worse when unmedicated but pretty good with sinemet. went 6 years without meds but got to' the same point your're at.

the problem with not taking meds is your're miserable, you have the fatique you describe - i have it and it's terrible when sinemet wears off - and then you just become a blob because everything becomes a major chore. you procrastinate over the simplest chores.

if you believe exercise may be neuroprotective, then you want to be as active as possible and sounds like you need meds to be active. my attitude is live for today, you could get hit by a bus tomorrow. you're miserable now, deal with it, you may never get dyskinesias.

i'm getting by on 5mg selegeline - stopped taking it but started again since it does help more than it hurts and 400-600mg sinement a day, split between normal and cr. couldn't tolerate agonists. went jogging yesterday.
yet when the sinemet wears off just shuffle like an old man. i probably need more but like you i'm a little worried so take meds so i'm functional from 8am to 4pm, more when i need to.

of course there is the cost issue, generic sinemet is cheap if you don't have insurance.

haven't tried the extended release agonists.

I would say try it and be aware of the positives vs negatives, see how it works or not for you.
Keep in touch with the dr about any concerns.

I can only go by how my dad is doing though.
He mainly had the shaky arm & dragging foot/leg as physical symptoms early on -
Has slow response or short hang ups with use at times but not too bad at all.
He has back problems too { DDD} so pain comes into play as well as depression so is on pain meds, TENS & anti depressant.

What I would do-
You only get to do this once - going onto meds - so
I'd think it through. Is there an option with mucuna? Aminos and precursors? Bs? I'd try each one for a month.

If more is needed, i'd go for the sinemet, not the agonists. Sinemet has been around 40 years. The surprises are over.
I'd learn about protective things like lipoic acid, l-carnitine, resveratrol, etc.

I'd take as much as I needed, but i'd try to skip days often to try to prevent dependence.

"I'd learn about protective things like lipoic acid, l-carnitine, resveratrol, etc."
clinical trials on humans or opinion?

I've been taking mucuna and other ayurvedic herbs for 6 months or more - no change at all. Also taking Vit B, D, ALA, L-carnitine,green tea, curcumin, fish oil, Dopavite and other stuff I can't remember.

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?

trixie,
nothing slows the progression so your're going to get worse whether on meds or not. good luck. i suggest you find a good neuro, join a support group. can't give any more advice.

you need meds
 

I can't tell you what to take but know where you're at. You are never going to feel comfortable and you're anxiety is going to make it worse. Just go on meds. You need it. It's not like you will look back and say I wish I would have tried this or that. Sounds like you have. This illness doesn't get better - it's all about symptom management. We complain and moan but truth is i'm still on my feet after more than 20 years. I have no choice but to take meds.

Time to feel better while you can,
paula
IMHO

There is a time for meds.
 

In my opinion, you have arrived at that time. I've been taking generic sinemet and amantadine for the entire time after I was dx'd in 2001, and I have never been sorry. I struggled with depression for more than 15 years prior to PD Dx (still take antidepressants), but after beginning carbidopa/levodopa (sinemet), I experienced the greatest antidepressant effect ever. Of course I can't guarantee you will respond in that way, but, hey, low dopamine can't be helping your mood.
I also take a variety of other things, among them, dextromethorphan (approx. 4 mg at bedtime in cough syrup with no other active ingredients), CoQ10, multivitamins and minerals, and a supplement elixir containing resveratrol and other plant polyphenols.
At this point I take a total of 700mg carbi/levo, 600 of which is CR, each day, and I maintain an essentially normal level of activity for a 72-year old.
As we all know, we are all different, and I can't presume that what has worked for me will be good for you. Just wanted to chime in with my experience.
Robert

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


hello trixiedee,

your story rings famaliar

-an "early" onsetter tremors started for me at age 36. I'm 53 now and started small dose of sinemet only 18 months ago....in short it gave me my life back. when i tried mucuna it didn't feel good though to be fair i didn't stay with it long....it took 3 months to really feel the benefit from sinemet and a year and a half down the road am still experiencing new improvements on a relatively small dose.

I understand how raising kids while experiencing this condition weighs on the heart and evokes caution with going down a one way street so to speak, and, like you i engage a myriad of various healing practices which all contribute to my path towards wholeness.

since adding fava juice and fresh beans i've reduced the sinemet from 3 doses/day to two (10/100) and feel better - also i take an aryuvedic herb combo that i suuspect potentiates the sinemet because taking a minute dose together wwith a high dose of medicine can maximize its uptake (i have a background in homeopathy). my suggestion is to be patient and start low and slow on sinemet.

if you have a broken leg you may need a cast. there comes a point when relief becomes more important than anything -

i use sinemet as a sort of biofeedback assistance hoping to groove more deeply new neural pathways. i too share a deep respect for drug effects and i will say sinemet is more benign than i had feared as regards to altering ones cognitive functions which was a huge concern..actually it helps ground me in meditation.

kind regards,
md