I am 45 and have had YOPD for at least 10 years (I suffer from stiffness and slowness rather than the shakes). I have been on 3 x sinemet a day for about 15 months. I am already suffering a little diskinesia and fluctuations. I saw my neurologist yesterday who pinted out that if I live another 40 years and refuse to take agonists, after around 10 years I will have severe problems with the sinemet and have no choice but to go for DBS. As I am a single mother of 9 year old twins I need to function and not to risk brain surgery. He thinks I am mad for refusing agonists. I don't know what to do - the reality has hit me, the sinemet honeymoon is over. The side effects of agonists terrify me. I tried ragasiline and it helped for a while but I felt hungover and depressed so I stopped it. What do I do????

Trixiedee

You might want to take a look at the "new Mucuna Paper" thread below.

I did look at the mucuna thread. I saw an ayurvedic therapist for about a year before taking sinemet and took mucuna alongside other herbs and it made absolutely no difference. I do have a drawer full of Zandopa but feel a bit nervous about taking it as it's made by a chemical company. I would happily try the liquid mucuna mentioned if I knew where to get it!

Trixiedee

The good news about agonists is that you can change doses to see if they work. I tried Mirapax and had the miserable side effects you refer to, then changed to ReQuip XL and life is good. With the cycling, I reduced the dosage of ReQuip XL and dropped Axilect. Life is still good. My neuro told me yesterday that there is almost no change in symptoms over the last three years. Each time I've changed meds, I have given the change at least two months to work and made no other changes in an effort to control the variables. Mirapax works great for some folks though. So much is trial and error.

I wouldn't reject agonists out of hand. You are well informed and know of the risks - so you will monitor accordingly.

When I was dx'd 13 years ago, I was placed on agonists only for 6 years, and I suffered from most of the common behavioral side effects. I finally started on sinemet, went off agonists, but have since chosen to balance both - it works better for me - but I'm always aware of the danger hidden within the agonists.

i couldn't tolerate mirapex or requip but haven't tried the extended release formulations because sinemet still works ok for me with no dyskinesia after 11 years.

imho your kids need the best mom they can get, as they get older they can take care of themselves or even you, so i'd bite the bullet and try the extended release agonists, i think you should know in less than a month how well you can tolerate them. worse case you halt them, best case you will be a more energetic mother which has it's own benefits. hopefully in the next 5 years there will be gene therapy treatments as an alternative to DBS, there's a lot of stuff in the pipeline.
surprised your neuro not recommending stelvo. stalveo?

just an opinion, i'm no expert.

Dear Trixiedee,

Was your response to rasagaline fairly quick (within a couple of weeks?) How do you like your neuro and it seems a biit arrogant that he predicts your future.I get a red flag when a doc uses emotional blackmail. Do you have options in other docs?

Whatever your decision it should be yours (Take the victim card out of the equation)- one that you can say no matter the outcome its the best choice you have right now. what would be your choice if you were making it for one of your children?

lately ii've been thinking that to achieve balance sometimes i have to leave my comfort zone if fear is part of my dilemma. judging from posters on this forum some folks derive benefit from the agonists - there may be some better versions of requip such as cyprenil.

or perhaps you aren't ready to change your regimen just yet - do you find that you do better in the Spring? The "Life Extension Foundation" (based in the UK) might have some ideas as they used to be the source for liquid deprenyl citrate.

to assist mucuna uptake have you tried terrestiis tribulus? i took that in the form of zofratax with sinemet for pain and stiffness with success.

another factor is menopause - one that plays a huge roll for me

what an exercise in patience this condition is. At least currently you seem to be doing pretty well.
sharilyn

I noticed benefits from the rasagaline immediately - the sinemet lasted much longer. But over a few weeks I started to feel depressed and hungover- my acupuncturist said my liver was struggling with it, which makes sense - I drank half a glass of wine and got a 3 day hangover from hell. I was only taking half a pill a day and taking green tea extract with it.

Yeah I am not impressed with my neuro - I travelled for 2 hours to see him, waited 1.5 hours in the waiting room abd then he spent 10 minutes with me and ignored all my questions about hormones and PD. He was very arrogant! I've never come across a neurologist who isn't though.

I'm definitely not playing the victim - I just wish I could find a professional who would look at my situation holistically, I feel like I make all my decisions based on what I read on forums like this.

You are right I am very sacred of agonists - scared of losing myself and scared of the sleepiness, I'm already really tired all the time, I couldn't function if I was more tired.

As for liquid deprenyl citrate - isn't that selegiline? Selegiline is a type of amphetamine and considering my adrenals are so blown that I can't drink coffee I think that taking ampthetamines every day is probably a bad idea!

I did take terrestiis tribulus with the mucuna - made no difference :-(

As for menopause, I'm 45, and am on the pill as I can't function for two weeeks around my period. This is another area I really would like some guidance with but can't seem to find any. I do have some maca which I think you recommended, maybe I'll take that again.

Thanks for your suggestions, I really love your posts (sorry I don't spend much time here, I try to pretend I don't have PD sometimes so I only come here in desperation).

Trixiedee

yes - i understand - i found myself using some expressions and words that other posters had recently uused in posts i hadn't read till after i'd posted you are wise to not occupy yyour thoughts with pd - another member who went to south america stopped posting in here too for the same reason as you-good idea as iit becomes compulsive

occurred to me today it would be interesting to find a very old neuro who treated pd before the advent of agonists to gain insight to this issue. but then it seems high incidence of YOPD seems fairly recent -so not sure about that.

blessings,
sharilyn

Hi Trixidee
If you haven't already checked your B-12 levels- you may want to check them after 15 months on sinemet and you reporting so much exhaustion.
There is a good thread running now about methylcobalamin in high dosages. I was diagnosed with a B-12 deficiency just weeks ago (mostly feeling great muscle weakness with some fatigue) and am already feeling great relief.
Also, as to your arrogant neuro... I agree with the previous responses about making your own choices. So far, after 15 years since diagnosis, I have never taken agonists, although I did trials with Mirapex and Requip. They just don't agree with me and had too many side effects to balance any help they may have given. That is so far anyway, I never say never these days.
Good luck!