Hey guys, I have been diagnosed for 2 years now and had a wake up call. I was stuck in a hotel and not out doing much moving. Then I had a chance and walked a lot. When I stopped I could barely sit down, the pain was significant. When I tried to stand it was very difficult. Back to the hotel, same thing. Nearly locked down. I forced my way out and got up, it hurt a lot. I guess I need to try Sinemet? I became panicked. I think my time has come, I tremor when I wake up most days and then all day. . Elbow hurts, shoulder hurts for no reason, feel like gravity got turned up on me. I was wondering if I could have a hip problem I didn't realize as far as the sitting too long? This is hard, my family thinks of me as the tough one, working hard and moving forward. I broke down a little when this happened, it is hard. I know you have been through it, I guess I am arriving. I will lose my main job, but I have other options. I am a survivor as you all are. I guess my question is do y'all think the medicine will help me?
? about stiffness, I may have hit my peak🥺 - Cure Parkinson's
? about stiffness, I may have hit my peak🥺
Give yourself a break and start Sinemet. No need to suffer so much.
Doctors usually prescribe the immediate release version by default. There is also an extended release version which works better for me and others. More detail here: healthunlocked.com/cure-par...
So many people avoid medication for as long as possible until they get so bad that they finally surrender to trying it. My friend, listen to me! Get on sinemet. You will get some of your life back, not all, but it will make a big difference. It's very much worth trying. The first thing I expect you to notice is that you're muscles will loosen up. The second is reduction in frequency and severity of the tremors. Your doctor will probably start at a miniscule dose that won't be a noticeable difference but hang in there and give it a few weeks and dose adjustments.
People who get Parkinson's are typically very tough and stoic. Also very pleasant personalities. Google Parkinson's personality. You will be amazed. Same personality traits as mind-body syndrome.
As long as you're still working, let me advise you to maximize your long term disability policy. At some point it could come in very handy. I was diagnosed with young onset Parkinson's at age 44. Symptoms were mild, mostly handwriting issues. Tremors came several years later. I managed to hang in there with my job that required a very high level of dexterity for about 8 years, then I felt like I needed to bow out. Disability insurance made it so much easier. Best of luck to you!
Very probably the medicine will help enormously.
A few people online wear the 'no medication' badge of honour, and although it's great for them, it can put unrealistic expectations on others. Everyone is different, and don't see it as throwing in the towel. Start slow, it's about trying to maintain your lifestyle. You should try and do what's best for you.
Also meds aren't an excuse to stop trying! Exercise, diet and stress are all still important.
Thank you for the info. I’m not trying to wear this as a badge of honor. I’m ready to take the medicine. When I start taking medication I will lose my job. I might be able to get it back if everything falls into place. I need to work as long as possible because I really like having a house and eating😊. I don’t want to disclose anymore about that.
Bassofspades, luckily I do have long term disability.
Hopefully I can get into to a neurologist soon, they are tough to see.
Thanks again!
I’m curious. Why will you lose your job if you start taking medication? Are you a truck driver? That’s my assumption, but I am sure many are on medication’s and are not losing jobs.
Rest assured as bad as the workforce quality is out there right now in any industry, you will have no problem finding a job my friend.
Can’t disclose what I do. I may be able to do it a little longer if the powers at be approve me to. Of course I can get another job but nothing that pays like this that I can do. I do have a side business also. I just wanted to hang on as long as I could, it’s fun too.
I can't think of any job requirements that say no prescription carbidopa Levodopa, and besides that, it's personal health information and that's private. Im glad it's fun for you. Good luck 😀
Thank you Bass. Unfortunately in my world there isn't privacy concerning heath and I understand why and agree with it.
I was a surgeon I felt that I could not ethically work once I had a diagnosis. I quit within two weeks 62 1/2. My insurance Covered me until I was 65. I could imagine a plaintiff, lawyer, asking “ Doctor, do you think parkinsons anyway impaired your ability? How was it helpful? “P
Same here. I was a Cath Lab tech
OH, it’s one of those “if I told you what I did for a living, I’d have to kill you“ type of jobs….I see.🤣🤣🤣
I am unfortunately a desk jockey if you will, sitting behind a computer for 7 to 8 hours a day. But that’s more detrimental to Parkinson’s in my opinion, as opposed to a job where I could get up and move around a lot more. Although I do have a standing desk, so that helps from time to time. I mean, I’m not chained to the desk, but that’s where the bulk of my workload is.
I’m 59 and have quite a few years before retirement. So doing all that I can to keep the symptoms at bay.
Well not quite that extreme, but nearly :-). I am 56 so I would like to do this work a few more years. Good luck to you.
If you want to delay taking medicines, you can try HIIT which will help you a lot. Visible improvement will appear after 4 - 6 weeks after starting 45 minutes daily HIIT. Please dont rush into it and start is will less exercise (say 15 min) and gradually increase from there on
Same at 56 years. Trying to hold on!!
Mellaji & Big Tex - the game changer for me was starting C/L, and yes at the lowest dose possible. I tried to hold off like so many others have on this forum, yet there were an equal number here that said don't wait.
Granted, I hate putting meds in my body and I hate all the more supporting big Pharma.
The Bible says that "life is but a vapor that appeareth for a little while, then vanisheth away." Life is way too short, and I am taking all the steps I can to live it to the fullest - with the touch of God and through the science he has bestowed upon men.
I have my good days and my bad days, my good hours and my bad hours. Take the good and run with it as long as you can. For me, C/L gives me more good, than bad.
I am so sorry to hear that you are going through this awful transition.
Did I understand correctly that your tremors are only at night/during sleep and waking? You don't experience them during the day time?
Discogs Thank you. I apologize, I was trying add humor but failed. I have them all day long, varies with how well I rested the night before seems like. I don't always wake up tremoring, but most days I do. I have internal ones also. I am also finding when I type my hands don't do exactly what I want them to do when I first start typing.
You should definitely start levodopa, however keep it at minimum possible dose. It's a long term journey and you should try to keep the medication benefits for as long as possible
Farooqji, I am setting that plan in motion, as soon as I can get to a movement disorder specialist I will get right on it. I am ready. I was planning on starting as small as I can get a good benefit from.
If you can get in to see a general neurologist sooner, they should also be willing to prescribe sinemet for you until the MDS appointment.
big T welcome to the strategic circle of PD wisdom . I visit & learn daily on this site…good mob
I will concur with the group from what has been said thus far. Tremor does come on from anxiety or excitement which is what may be happening when you wake. Just the anticipation that it may happen, can bring it on, in my experience. Mindfulness, good sleep hygiene, diet, supplements, exercise and everything else that good for you will help tremendously. Most neurologists will prescribe 1 sinemet 3 x a day to start. With guidance from this group I realized that was too much for me to start. Too much has the same side effects as not enough. Go slow and keep note of the changes as you titrate up. Lots of good luck. I think you will see the world differently when you have more control.
I agree with the surgeon's response. It is not always about ourselves, but about how the disease might impact others. Driving a car is another big issue and it is often others who bring up the topic as they can see, where we cannot, that driving might cause others injury.
Keep positive, I was diagnosed at 58 and the minute I started Levadopa my career as a pilot ended. Life didn't end, just started a new life style with focus on slowing symptoms down using minimum Levadopa and using light therapy helmet and Symbyx pdcare laser treatment along with building a set of vibratory gloves . All combined I'm having positive results,exercise and reducing stress along with proper sleep are so important also. Thankfully I had disability insurance with my company and a supportive wife and family,because PD is hard on everyone around you. Good luck on your journey!
@Logon206500 Can you share information about the light therapy helmet you are using? A link to read about and possibly order would be great. What has been your experience with it?
wellred.com.au/how-does-it-... is the unit I use, I got it used on ebay. Symbyx also makes a light helmet. I find my energy levels are higher after use and definitely helps with slowness. I use twice a day, total 48 minutes. The wellred website answers all questions you might have. We'll worth the money spent, my wife notices the change in me if I don't use forca few days. Good luck on your PD journey, stay positive.
I am musician, pianist, better say, i used to be a pianist,but not anymore...
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You will always be a pianist even if you aren’t playing. I’m very sorry you can’t play anymore. I play several instruments and not sure how much longer I can play guitar live. I’ve noticed the excitement of playing causes me to tremor more and have difficulty placing my fingers. The first time it happened it freaked me out. I’m hoping the Sinemet will help with this and extend my days of performing. Guess I will go back to being a drummer until that runs out.
I started madopar and it was great
BigTexan have you considered intermittent fasting/(keto) dietary approaches prior to meds? Also mucuna pruriens - natural form of L-dopa - some use it as supplemental to their sinemet… this is considered a “supplement” - but as effective, and may be neuroprotective as well.
And it does not have to be sinemet. Below is an article on Dopaminergic Oral Medications by Dr Matthew CL Phillips, a clinical researcher in New Zealand, to his Parkinson’s study participants. Dr. Phillips conducted the world's first randomized control trial on Low fat vs Ketogenic diets in Parkinson’s, a crossover trial in Alzheimers, and a number of case studies in debilitating neurological conditions including ALS. His current research is combining fasting/keto with standard treatment for glioblastoma, an aggressive form of brain cancer and the initial results are promising.
Oral medications link: static1.squarespace.com/sta...
Dr. Phillips’ website: metabolicneurologist.com
I just watched Dr Phillips speak with one of my favorite Docs, Ken Berry. Very interesting. And yes I intermittent fast and eat more of a carnivorish keto diet. I tried Mucunu and at first it helped and quickly stopped helping. Maybe I didn't try long enough. Thanks
a word on Mucuna. It contains L-Dopa, which is a direct precursor to Dopamine. Most of this L-Dopa is going to metabolized peripherally, meaning very little is going to make it to the brain. This is why large doses cause nausea. However, a very large dose is necessary in order to get the amount required to relieve symptoms to the brain. Enter Carbidopa. This is the compound that prevents peripheral metabolism of L-Dopa by binding irreversibly to vitamin B6. Thus, more L-Dopa will be available to cross the blood brain barrier. Note that Carbidopa does not cross the blood brain barrier, neither does Dopamine. But now if you've taken Carbidopa with your L-Dopa (also known as Levadopa) you will only require a fraction of the L-Dopa that you needed without the Carbidopa, thus reducing nausea as you reduce the dosage of L-Dopa. Just to be clear, Carbidopa amd Levadopa combined in a pill form is what Sinemet is. Sorry if I'm being captain obvious, but I dont know how much you know this already. Have a great day!
I have had so much cramping and stiffness that I started mucuna daily ... still have lots of tremor, possibly not taking enough or too much. I also take green tea extract with the mucuna. Anything natural is better for a body than synthetic imho. I'm 58 and going on two years since diagnosis - which itself, I am certain sped up my progression. Hang tough fellow pwp. Lets keep comparing notes.
The path is not easy and some good advice here.
I was Dx at age 45, working as an Expedition Boat Captain travelling internationally. Very difficult to retire but was necessary for the safety of all concerned.
If you are in an occupation regarding safety please carefully consider your options and maybe look at your side job a bit more.
There is life after Dx and it can be very fulfilling 😊.
Regarding meds, I moved from Sinemet to Mucuna Puriens seven years ago and it works well for me.
The muscle pain etc is also part of my experience and one of the first significant symptoms. I have been taking low dose Tramadol (25mg/day) for about 12 years to help get me started on days it is difficult to move. There seems to be a connection with the Dopamine system via the receptors and it also helps my mental fog. I do not take everyday but it is good to have when needed. I also stop taking for 3-4 weeks to ensure no addiction issues.
Also yoga, qi gong or similar practices may also be of benefit.
Hope this helps 👍
Do you take mucuna extract or raw mucuna powder? How is it different from Sinemet in terms of inducing dystonia and dyskinesia. How much is the ON TIME as compared to sinemet
I too put off taking medication as long as possible. I am now 12 years post-diagnosis and still try to keep meds at a minimum. I decided to take the meds when I couldn't sustain movement to exercise. No one here has mentioned Azilect (rasagiline), which slows down the breakdown of dopamine, nor any the dopamine agonists: Mirapex (pramipexole) or Neupro patch (rotigotine). Again, since I started meds so long ago, these may no longer be in favor (and some people don't like dopamine agonists, which for a while were sometimes used first without C/L). I take a combo of all three.
It is a major adjustment/grieving when you recognize you need and want to take medication. It was for me. And still is as I resist upping my dosage as the disease does progress. I look at the meds as an equal partner to fast walking, yoga, tai chi, aerobics/weight training, and meditation in maintaining my body, mind, and spirit as best as I can.
Have I got Parkinson's 
Humpty Dumpty
New to PD - Having Issues Accepting Diagnosis
