Newly diagnosed

Hello all!

My name is Shawn and I was diagnosed with Parkinson's week. I haven't had any breakdown, I am trying to just accept that it is what it is. Right now my symptoms are extremely shaking in my right arm and left hand, I lose my balance several times a day but thought it was just because I am old!

I started Sinamet ( I think that's it) right away, a low dose to start with.

I am 57 and have two grown children and for Grand kids.

I have 2 questions for anyone who can answer, I noticed a difference right away, but it tends to wear off in about 3-4 hrs. Is this the norm? Also, how long does it take for the drug to reach full effect in my blood stream, weeks?

Sorry for the rambling, it's all new to me.

Thank you,

Shawn

[Xenos]

Hi Shawn, welcome to the club nobody wants to be part of !

You have here reached the right place, and I mean it.

The wearing off the the effect of L-Dopa after 3-4 hours is perfectly normal. After a while, your neurologist will maybe try Extended Release versions of your medication. Sometimes it works, sometime it doesn't depending on the patient.

The effect of L-Dopa takes place after half an hour, up to one hour. There is no long term effect.

[Hidden in reply to Xenos]

Thank you, maybe you could tell me, I didn't sleep well today at all. I work nights, and take a pill at ten am. I am shaking uncontrollably, as if I didn't even take a pill. Does being tied or lack of sleep worsen the tremors?

Shawn

[TheGimba in reply to Hidden]

Hi Shawn,

Lack of sleep and stress will definitely worsen your tremor. Establish a routine and take your medication as prescribed at the exact time, set an alarm if you have to. Simplify your life as much as possible to reduce stress.

[Hidden in reply to TheGimba]

I work nights, five nights a week. My schedule is all messed up and my script says the times a day, so I am very faithful with it. Since the one day with no sleep, it's been absolutely terrible. So obviously I need to work on sleep

Thank you

[M_rosew]

Each Sinemet tablet should 'work' about four hours. Then you take the next one. This isn't a cure, it's symptom control (to help you get on with your life).

I experience tremors getting worse with tiredness, or with emotional upset.

[Hidden in reply to M_rosew]

I didn't sleep but two hours and boy was I shaking! I wondered if they get worse with stress and no sleep, thank you!

I am trying to learn all I can. I know it's just a control for the tremors, just have so many questions.

[Grumpy77 in reply to Hidden]

Hi imchosun.

You mentioned you shake uncontrollably

I was just wondering - did you see a neuro/doctor at the earlier onset, when your symptoms were mild?

[Hidden in reply to Grumpy77]

I saw my doctor about a year ago and he thought it was just essential tremors. Since then it got worse and other things happened, loss of balance often etc. So I made another appointment. Hence, starting the meds after a lengthy appointment/discussion and referral to the neurologist.

[Hidden in reply to Grumpy77]

It started in my right hand/arm about two years ago but of course I did nothing. It got a bit worse and I went to the Dr., But I didn't follow thru with referral to neurologist as I don't have insurance. I should have.

[JohnPepper]

Hi Shawn. I don't think that Pd medication and specifically levodopa medications are the way to go. I am not a doctor but I am a Pd patient who has been able to reverse his symptoms to the extent that I have lived, medication free, since 2002. If you don't believe this, then that is YOUR CHOICE!

If you would like to learn more then look at my PROFILE and also look at my website, reverseparkinsons.net. and contact me. I will send you my videos and a whole lot of information about how to positively deal with your Pd. It will cost you NOTHING!

It may or may not work for you, that depends on how much your are prepared to do to HELP YOURSELF!

[ddmagee1]

Hello Shawn, I had the same problem. My neurologist upped my Sinemet to 1 and 1/2 tablets 3 times a day, and that helped a lot, so that I have very little, if any, downtime, between doses, such as resting tremor and extreme stiffness. Maybe it would help to see your Dr. and explain the off times to him.

[Hidden in reply to ddmagee1]

The last two days have been horrible, when I want my hand to do something at work, like use the mouse or write, it's horrible. I got more than enough sleep today as opposed to yesterday when I got little if any. I work the night shift at a hotel. When I am at home, it shakes, not so much resting but some. It's embarrassing at work.

[ddmagee1 in reply to Hidden]

I used to work at a hotel, too. Nothing's worse than being embarrassed at work, by the shaking, so I know exactly what you are talking about. The higher dose of Sinemet stopped that, for me. Once in a while, a small minor tremor, but I can live with that. I worked front desk, night audit and manager at a hotel.

[Hidden in reply to ddmagee1]

I love this place! Thank you!

[gingerj in reply to Hidden]

I too suffer mainly with tremor. I put up with it for two years before starting sinemet. I used to be embarrassed when people at work noticed, which mafe it worse. Best to let everyone know that you have Parkinson's and you shake a bit less. Also try propranalol. A beta blocker that helps with tremor. I start work at 5 so sleep can be a problem for me too.

[ddmagee1 in reply to gingerj]

Some employers hold it against people, if they find out that they have PD. Just saying. Some don't. One has to analyze the working environment and the employer's attitudes toward illness and disability.

[Hidden in reply to ddmagee1]

I have worried about that. Would they think I was a liability, that sort of thing. I haven't told them, but the tremor is blatantly obvious..

[gingerj in reply to Hidden]

Best be honest. Everyone I told said they'd noticed but didn't say. I thought I was doing a great job hiding it 🤔

[Hidden in reply to gingerj]

Yes odd shifts make it hard doesn't it?

[1953bullard]

Odd shifts do make it extremely hard. The more routine the better. Exercise is an absolute must. The more intense the better. Maybe try some mediatation before bed. I wen to the extended release sinemet and it works much better for me. Just take it twice a day. Also, Sinemt should be taken at least a half hour before food and no food for an hour after. I do believe no restriction like that on the extended release.

[Hidden in reply to 1953bullard]

Thank you so much !

[justhavefun2]

Welcome Shawn!

[Hidden]

Aaaww, thanks!

[Erniediaz1018]

Welcome Shawn.

[jennrich]

Please go to the internet and research everything you can about the Hinz Protocol developed by Dr.Marty Hinz MD, also known as amino acid therapy for Parkinson's. Find a practitioner who has been trained in this protocol and has several years experience. It should not matter where they/you are located, because most do treatment via Skype. This offers the best hope in my opinion. Also, not to scare you, but please research the dangers of carbidopa use. Sinemet works well at the beginning, but you need to be aware of what will happen in the years to come. Once you have all the information, you can decide what is best for you. Start here:

blogtalkradio.com/parkinson...

healthpromoting.com/sites/d...

[Juliegrace in reply to jennrich]

Are you on the Hinz protocol? If so, how long and when were you diagnosed? What are your symptoms? Generally, when people here recommend a treatment they share their experience.