HI all. Well we're 2 weeks in from diagnosis and I have my first question for the group. Background - he (boyfriend - 42) sought treatment because his right (dominant) shoulder had become stiff, no swinging and he was having dexterity problems with things like tying his shoes, shaving, etc. as well as general slowness. Ended up at a neurologist who prescribed an increasing dose of generic Sinemet starting with a 1/2 pill (25/100) once a day and increasing a half pill a day to eventually 2 pills 4x day. He's still not at full strength (I believe yesterday he did 1.5 pills 4x). We were together over the weekend and I noticed that his left hand now pulses/twitches/flicks whatever you want to call it when he's not thinking about it. So when I call his attention to it and he looks at his hand it stops (and I look like an A-hole ). He doesn't got back to his neurologist for 6 weeks. Is this normal/common (I know nothing is normal anymore)/expected or should he call the neurologist for re-evaluation of dosing? I know what I think but trying not to 'muddy the waters' with my opinions or thoughts. Please let me know your experiences and any advice as to how to communicate this to the doctor (or office personnel). Thanks in advance. [p.s. he says that he has noticed some improvement on dexterity with his hand and maybe some loosening in his shoulder, I think he might be a little faster that one is hard to judge]. One more important piece...the twitching seems much less first thing in the morning (before meds), during the day while on meds nearly constant if he's not doing something with his hand.
Newbie Question: HI all. Well we're... - Parkinson's Movement
" his left hand now pulses/twitches/flicks whatever you want to call it when he's not thinking about it" - That is precisely the Parkinson's resting tremor. It is an oscillation in the autonomic system that tries to maintain position in a resting limb. When you pay conscious attention a different system kicks in and the tremor stops.
There are many people who’d been living with Parkinson’s disease for many years. Some of them say;
1)they have slowed their progression
2)they have stopped their progression
3)they have diminished their symptoms
4)they feel better now than before they were diagnosed
5)they're completely symptom-free
Some of those people
1)take prescription drugs and follow a nondrug regimen
2)follow a nondrug regiment only
None of those people follow a drug therapy only.
Therefore, your choice is not whether you should take prescription drugs or pursue a nondrug therapy. Your choice is whether or not you should add drugs to a non-drug regimen.
Prescription Parkinson’s drugs provide some relief from some symptoms for some people a few hours at a time. They do nothing more than that, so if your Dr. or neurologist is dismissive of supplements and you choose to only do what they say, you are closing yourself off from any possibility of improvement.
Lastly, many of the major Parkinson's foundations like the Michael J Fox Foundation point out that many movement disorder specialist delay prescribing carbidopa/levodopa therapy because it will eventually induce dyskinesia and instead administer other things first.
The best thing you can do for your boyfriend is with the 2 of you to begin reading to this forum as much as possible as soon as possible. This form might even be better than exercise. Ha.
Thank you for your comprehensive reply - there is an amazing amount of information on here that I have been consuming in quantity for the last 2 weeks. This site has been fabulous for so many experiences and points of view on nearly every subject. Some have been very helpful, some discouraging. My goal is just to look under every stone possible to find out anything that could be missed.
It seems like a high dose for someone newly diagnosed. The twitching of the hand reminds me of my early dyskinesia.,
That Sinemet dose seems high to me, I am only on half that amount after four years of diagnosis.
I agree with Juli and Ramondo,
Many people find one tab 3 times a day sufficient in the early days. At a young age he is much more likely to develop dyskenesia than old people with pd. its not something to be frightened of as some people are. Its annoying but i find its not nearly as bad as being un medicated.
Your boyfriend will do best if he gets actively interested in his treatment and notes changes, keeping a simple diary is useful. If you wonder if it is resting tremor as parkbear explained or dyskenesia you could take a movie on your phone and the ask the neuro. There are different responses depending what it is.
It is early days and you would hardly be past the shock of it all. PD is a real nuisance but you both should find that life goes on much the same especially in the first few years.
functional doctors like mark hyman will explain that auto immune disease ie one of which is parkinsons links to the gut you need to heal your leaky gut to improve .. apparently some parkinsons sites have actually picked up on this and are recommending approprite diets ive seen good improvement in folks who stop eating grains which these days are soaked in pesticides pre harvest. see work of stephanie seneff on this organophosphates wreck the gut ..the gut = 2/3 rds of your immune system.
farmers and folk who live near grain producing areas now have been shown to hve higher incident of parkinsons.
get a bioresonance scan that will show you your toxic levels and what foods your gut is sensative and what suppliments you need to help heal it.check out dr mercola or dr axe and leaky gut look at dr grundrys work the plant paradox. j fox the actors site on parkinsons apparently also has dietary links ....
drugs are not the answer ...........diet and detoxing heavy metals and chemicals makes a difference
My guess is that the 'twitching' is called Dyskinesia, and that is a side effect of too much Sinemet in the brain.
No Pd medication does anything to slow down the progression of Pd. The only thing I know of that can and does have an effect on the progression is exercise. Look at my profile and contact me on my website - reverseparkinsons.net and I will show you how to go about doing so. It costs you nothing, unless you want to buy my book on Amazon, which is titled 'Reverse Parkinson's Disease'.
It may be also to much. I know if my dose is off as to much. I have dyskinesia, which is more the uncontrolled tremor and jerking. It's highly unlikely that he has progressed that quickly. Either to little it to much. He still has 6 weeks. Depending how he feels well change his dosage. I was up to at one point 2-25/100 pills every two hours. At 5 years then I could have my DBS surgery. Now I'm at 2 in the morning, 1.5 after 4 hours and repeat then back to 2 by 6 and 1 with an controlled release at night. Stress no matter how little will throw everything off. Bad day at work, or anything can set you back.
He will have to play with his medication and record how he feels after 30 minutes to an hour after taking medicine to when he starts feeling off or stiff, trembly. To trying different. Everyone different but we all have the same. Just our bodies react differently. We are our own best diagnose treatment plans of medication after being given because we feel the difference and make the necessary changes.
When he feels he has the right adjustment let his neuro know what your at. So they can help and put it in your file to see how symptoms are changing.
Top of the day to you and your boyfriend! It seems to me that the higher dosage was prescribed rather quickly. In my case, I started out with 1 Sinemet 3 times a day, and then 9 months later 1 and 1/2 tabs., 3 times a day, when my neurologist found clinical signs that my PD was progressing and my resting tremor had returned. Then he checked a few weeks later, after the increased dose, to make sure that my symptoms were better, by another clinical exam. So, I believe you stated that now your boyfriend is on 2 Sinemet tabs, 4 times a day. When do you see a movement disorders specialist/ neurologist next? I would think he would want to closely follow this, to see if the Sinemet is working for your boyfriend, or if it may be causing dyskenisia, or what may be going on, so that he could evaluate the next step in treatment. My advice would be to have your boyfriend seen by a specialist soon to be reevaluated, and, if you are not pleased with the answers or results you may get, that you seek out a second opinion. Neuro-degenerative disorders are difficult to diagnose and each person is different. I think of each person with PD like snowflakes, in that each snowflake is different. No two are alike. Wishing you both the best in your quest for answers. Thanks for hooking up with this forum.
Yes PD is hard to come to terms with. I was diagnosed 2005. It’s been a long journey,
Madopar has been my ‘friend’ all these years. I would rather take it and
cop the ‘Dyskenesia, which has given me a life. Look into the benefits of Exenatide.
Helping me. Started 5/6 months ago.
The Dyskenesia has somewhat abated too as has Dystonia of the feet.
Nights were a nightmare but started on an extended release Madopar last night and what a difference. Wonderful result.
Each minute of my life is unique and I want to live it to the full. Without Madopar I would be in a wheelchair. No other choice really.
My story and I’m sticking too it.
I appreciate that you are taking pain to help your bf. Encourage him to start regular exercise which can slow down the progression of the disease. I suggest to discontinue sinemet and start rasagiline. Also start herbal remedies mainly mucuna
Read book mucuna versus parkinson treatment with natural levadopa. By Dr Rafael Gonzalez available amazon. Make sure u get the english version.
We know of a dew Doctors here and people who use mucuna zandopa brand and we very good success. No known side affects and better to start early than after a few years on sinemet as your body seems to absorb it better.
Hope it works as well as it does on those that we know are having success with it.
First of all, PD cases are like snowflakes... no two cases are the same. That being said:
1) It takes a little while for the Sinemet to take effect.
2) But I agree, he is taking too much. I am 5 years since diagnosis and am taking one pill three times a day.
3) I also take one pill of Azilect a day because because my diagnosing neurologist believed there is evidence that it significantly slows progression. APPARENTLY NEUROGISTS ARE LIKE SNOWFLAKES TOO. By the way, I have had no noticeable progression in five years.
4) Exercise is the best medicine...high movement exercise like boxing (I do shadow boxing). Keep moving as much as possible.
BOTTOM LINE: Have him ask his neurologist to lessen his Sinemet dosage and add Azilect or find another movement specialist neurologist who will. Azilect works best if started early. Start an exercise program with gradually increasing duration and intensity. Finally, tell him we said he is lucky to have a girlfriend like you.
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