I was diagnosed 3 months ago. I'm a 51 y.o. male. My symptoms started a few years ago with the tip of my left finger feeling "pressured." That's the best way I can describe. That was followed by carpal tunnel doctor, then I got a frozen shoulder, then a neuroma in my left foot, then odd sensations in my left leg. Nurse practitioner said it was PD, Neuro doc said it wasn't. Symptoms persisted, carpal tunnel surgery unsuccessful, DAT Scan revealed abnormal functioning of basal ganglia. My symptoms were described as "mild". I've been playing singles tennis for years, no drop off, no balance issues, no tremors. Just alot of tightness and tension on my left side.
I'm now taking (2 tabs) Sinemet 25/100 4x's per day, Ropinirole, remeron (although tapering off and going to gabapentin for sleep). The sinemet seems to only last 2.5 to 3 hours. So much information on these websites. Wow......what's going to happen to me? Am I taking the right meds, etc, etc. Feedback and suggestions please. Oh and doc is suggesting Comtan for a supplement to increase sinemet effectiveness.
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Jockboy17
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Diagnosed 2012
My regimen:
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.I
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Sounds like you are taking the immediate release version of Sinemet rather than much longer lasting CR/controlled release version. Controlled release is better for most people.
Ropinirole is a dopamine agonist which can have serious adverse effects.
If you have not already started with high dose thiamine you should look into that.
The best advice one can give you is that there’s plenty of life ahead of you, for you and your loved ones to experience and maybe even enjoy. Do not despair. A Parkinson’s diagnosis is not a death sentence. Sinemet plus Comtan is a great way to start things off. This disease is progressive, so stay on top of it, keep yourself informed and educated and you will be all right.
Man.....that is helpful to hear.....I just sometimes struggle to believe it.....my self talk can be wicked....and I'm a behavioral health professional.
Hi there. I was diagnosed 6 years ago at age 49 and I understand the disbelief. Until I physically saw my deficit on the DAT Scan I didn’t believe it. Mine started with dystonia in my left leg and foot . I am an ultra runner and I couldn’t even walk. I am on 6 cd/ld , Azilect in the morning and Comtan broke in half with a couple of my afternoon doses of cd/ld. There are so many other alternative things out there to try . Everyone’s journey is different but it’s important that you know that you are not alone. This disease at times can be overwhelming but try to be positive. Exercise is the best thing for PD. Keep your chin up . Karen
Thanks Karen, I appreciate your kindness and feedback. It's the not knowing that I struggle with. Maybe I'll be different I think to myself. And then all the medication options. Never heard of contam or azilect until today. John
John, I too had thoughts that I’m going to be different. I don’t let anyone or anything tell me I can’t. But my reality is changing ... We are all strong and fight the fight. Pay attention to what you eat and how much real rest you get too. Watch your protein by your meds . Should be and hour or more away. Take care. Karen
Welcome to the club nobody wants to be part of, Jockboy.
You have found the right place.
First thing to do is to read Royprop's pages on Facebook (the "documents" part). What you will do - or not do - with High Dose Thiamine does not interfere with your neurologist's prescription.
Physical activity is a must - but you already know that.
And I personally believe that PD could be the physiological stigma of long term anxiety.
Welcome to this forum! You are doing quite well, for just starting out. It looks like the docs have put you on the right regimen, for now. I felt much the same as you, when I was first diagnosed. As one neurologist, has stated, there are many worse ailments that PWP could have. Initially, one considers what the future may bring. In many cases, the nature of Parkinson's, from my experience, is that it is slow moving, in terms of progression. Sinemet, other meds, and regular exercise, and proper diet, with lots of B vitamins, is very helpful, for me, and has kept me going, for a long time. I've had PD, for about 10 years. Each person is different, in terms of how PD progresses, and what symptoms occur, and when. It depends upon where, in the substantia nigra, and other areas of the brain, that neuro-degeneration occurs. I emphasize what I can do, and don't worry about things that I'm not so good at doing, because of PD. I try to live as normal as possible. Sinemet helps control resting tremor, stiffness of gait, and rigidity, that I get. A description of your symptoms as mild, should encourage you to feel that you'll be relatively fine, for a long time. So, like I found out, no need to panic. As I tell people when they ask me, I have Parkinson's, but it doesn't have me. It's important that you have a good support network, as you travel down this path, that none of us asked to go on, Jockboy17. This support group forum has been my best way of expressing myself, and knowing that my fellow PWP understand what I'm saying, and what I am going through. Having a good medical team is great to have, also. A family that is understanding, compassionate, and helpful is a bonus. Having true, loyal friends, who stick with you through the good and difficult times, is beneficial. Any time you have questions, or need info., or understanding, just communicate in this forum, and you will find somebody who has had similar experiences, or knowledge of where to seek answers to questions you may have. Again, welcome!😁
Your post was so positive and helpful. I was diagnosed 6 months ago at the age of 54. I'm so scared of not knowing what me future will hold. I'm divorced with 2 daughters in their 20's. I do not want to be a burden on them. I still work and try to live my life the same way before this devastating diagnosis. I pray every day for hope and a major break through for a cure. My doctor put me on Mirapex .5mg 3x day. I also, struggle with anxiety and this diagnosis just makes it worse.
Hang in there. The first year, after being diagnosed, is, what I call, an adjustment period, where a newly diagnosed person begins to learn how to adapt, to being a "Parkie". The people on this forum, whom I have reached out to, have all helped me to adjust, each in their own way. So I am glad that you are participating with others, who may help you gain insight, into how to live from day to day, dealing with Parkinson's.
Hi Jockboy - keep up the aerobic exercise, 3x per week, at least 30 minutes per session. In general it doesn’t seem to matter what kind. Consider adding flexibility ones like yoga. You’ll not only help the PD but feel better in yourself. Good luck and welcome to the club!
Hello, I was diagnosed about 6 years ago at age 56 and wouldn't take meds for the first 2 years. Started with my right hand having stiffness and some numbness in right leg. It's a slow progression but lately the mornings before meds I'm in slow motion but that goes away after taking pills and I'm good for most of the day. Eventually you'll accept it and realize you're still you and life goes on, just a bit slower. I've always exercised and my neurologist tells me it's going to help slow the progression so I highly recommend it as often as you can. I know we're all different as far as progression but we're the same inside with worry and sometimes sadness so try and stay positive.
Welcome to the Wonderful World of Parkinson's. I was dxed 2 years ago, I'm 69 now and just have a tremor in right hand/arm, loss of smell and balance problems in the dark. There are a few minor things I can't do like writing ,but with computers, I print any letters etc. I use the mouse left-handed. Because of several injuries to my right shoulder/arm/wrist (Soccer,motorcycle and being crushed under a car) my Neurologist didn't think it was PD , until the MRI scan came back. I'm on 3x 12.5/50 mg of Sinemet a day. I'm 6 feet tall, weigh 13st 4lbs ( 82kgs,184lbs) ,I am also asthmatic (under control). Yesterday I ran 250 metres , and I mean sprinted, for and caught a bus. I was so proud of myself and I wasn't too out of breath and I hadn't fallen over, and the other day I mended a necklace for my wife (very fiddly, it took a lot longer to do than before PD,but I did it). I find stress to be my main trigger so I try to avoid it as much as I can. I was lucky to have retired 9 years ago and have given up driving ( I live in London, freedom pass and good public transport). So having PD isn't a bed of roses but also isn't the end of the world (yet).
Hi Jockboy. May I respectfully tell you that no Pd medication was ever designed to slow down or reverse the progression of Pd! ll medication is toxic and have mild to serious side effects.
If you look at my website - reverseparkinsons.net you will see that I have been able t reverse my symptoms and have lived, Pd medication-free since 2002 and have lived a 'normal' life ever since then. I am 84 years old and still walk 7 kilometres every second day.
If you contact me I will try to help you do the same. at NO CHARGE! I simply want to help other people get better. I am NOT CURED!
I agree with Cagey84 about exercise. I do cycling and yoga. Each has it’s own benefit.
I go to a support group, Shakers Anonymous, once a month. Last nights guest speaker was a seasoned social worker who recommended 30 minutes of exercise a day.
I do notice a difference if I skip a day but I’m 70 and hi intensity biking for 55 minutes and a full time job makes me tired. You are young, so kick up the tennis a notch and try yoga, great for flexibility.
Will do, thanks Dehlia. I've always been quite active but now I've joined a gym and am mixing it up with different functional workout type stuff. I dislike weightlifting and machine type work outs.
Hi Dehlia. May I point out something to you which you may not be aware of. The brain produces a natural protein called GDNF. That stands for Glial Derived Neurotrophc Factor. I a not a scientist but a Pd sufferer like the rest of us. Glial cells are the cells that have been destroyed by Pd. They are responsible for the production of dopamine and the shortage of dopamine is the reason why we have Pd.
Neurotrophic means 'Nerve Repair or Replacement. So that GDNF repairs our damaged glial cells and we then produce more dopamine and have less symptoms. Nobody in the medical world tells us about this, preferring to give us medication that does nothing to slow down the progression of Pd.
When we do SUSTAINED STRENUOUS EXERCISE, we create the 'Fight or Flight' condition in the brain which causes it to produce the GDNF
The best exercise I know is FAST WALKING on an uneven surface. Cycling does not do it because it is not weight-bearing. It is difficult for older people to run fast enough to cause the fight or flight condition.
So, fast walking is the way to go to reverse our Pd.
Have a look at my website - reverseparkinsons.net and contact me. I will help you to reverse your Pd, if you are interested. It costs NOTHING!
Hi Dehlia. I was not being pedantic when I suggested fast walking. If you are trying to reverse your Pd symptoms then go for what produces the most GDNF. Anything else can possibly be just a waste of time.
Hi Dehlia. In 1994, I was taken off Sinemet and Symmetrel by my meurologist and put onto Selegiline, which is an MAOb inhibitor. He did not take me off slowly he just took me off. As Selegiline is not a levodopa medication I have to assume that there are no debilitating effects from doing that.
The problem would be that you need something to help you with the Pd symptoms. If you start doing the fast walking and you feel the benefit of it then you should be able to start reducing the Sinemet slowly, half a pill at a time. Listen t what your body is telling you.
One of the people in my first Pd support groups was not prepared to pay the high costs of Pd medication so he never went onto Sinemet or anything else. He outlived everyone in that group, other than me. He was in his 90's when he died. He was prepared to put up with the symptoms and got on with his life.
I just came to say “welcome”! Everyone else has covered the basics eloquently. I was diagnosed 14 months ago at age 57. It takes a little time to work through things. This site was a deal changer for me! Great folks who are willing to help where they can. I am so thankful! Keep moving!!
I always recommend this letter for people newly diagnosed. I wish I had it when I was diagnosed 2 1/2 years ago at age 54. invigoratept.com/blog//a-le.... I am healthier now than I was then but it is hard work. You need to be dedicated to lots of exercise, a healthy diet, appropriate meds, and staying social. Think about finding a local group of people with PD to meet with. It can be an exercise group (i.e.: Rock Steady Boxing or something similar) or a support group (keep trying until you find one you like...positive and proactive are my guidelines). Some areas have social activities for PD. What area do you live in?
Hi Jockboy, welcome to this amazing supporting group. I don’t post as much as other members but I get daily updated by reading the new posts each morning while excercising at gym. I have PD for 12 years now since I was 43. You made the right move..... seeking support and keep well educated and informed so you may argue with your doctor if necessary, from now on you are your best advocate!. You will find a pretty common symptoms in PWP but no one experience symptoms the same way, timing or intensity, so the same way no meds or supplements work to everyone. It will take you time to know what works or not to you as well it’s good to you to know that some days you may feel great like you are improving a lot and other days you may feel miserable and disappointed. It’s OK you feel that way..... just turn the page, that’s it. My best advice to you is to keep excercising, eat the clean and organic as possible and to take the most in supplements and the less in prescribed drugs but in a way that you may balance your well being and to keep enjoying the life. Pray and thanks God for wonderful gifts and blessings he give us every day. Just back to the basics !
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