My husband was recently diagnosed with Parkinson’s and his neurologist prescribed c/l. He was talked into getting a second opinion and that Neurologist told him not to take the medication until he is disabled. He has tremors in his right arm and that arm does not swing when he walks. Stoops just a little. He has a little anxiety. He is taking RSB 4 times a week and walks when not taking the class. My question is - if he doesn’t take the meds, is that doing more harm? Is the progression continuing faster? I hope this makes sense. So grateful for this group.
Should you take prescribed meds for Parki... - Cure Parkinson's
Should you take prescribed meds for Parkinson’s or wait?
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Don't become disabled. 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.
The disease will not progress faster if he does not start c/l, so if he does not mind the symptoms he is experiencing, it is OK to not start now...
Thank you!
My neurologist avoided me starting on c/l because my symptoms are mild. He prescribed Rasaginline Mesylate (MAO-B inhibitor) and Pramipexole (Dopamine agonist). He started with Rasaginline because it's possible this medication might slow down or even cure the progression of PD. The results is still pending.
I also have a right arm tremor and also doesn’t swing. I’m on Amantadine 3 times a day 100 mg. It helps with tremor. I’m not going to wait till I’m disabled but will consider when more symptoms appear that warrants it.
Amantadine improves gait in PD patients with STN stimulation.
Take sufficient meds to enjoy life while you can. No real evidence that delaying meds gives you a better long term outcome, but obviously you don’t want to take more than you need.
The process of taking medicine in this disease is to start with mild dose of 0.5 mg twice a day for six months supported with lots of physical exercise. The neurologist increase the doses thereafter to 1 mg added with other medicines. The more you are dependent on medicines, the more you suffer because the brain waits for the medicines to work.. Sharing my experience- I am now a patient of PD for last there years. I take one dose less than the prescribed dose as I know that the effect of medicine is temporary which lasts for 12 hrs and the symptoms reappear . You need to take medicine again. Moreover, after few years, none of the medicines work . Therefore, do lots of physical exercise, walking, running, swimming, cycling etc with yoga or stretching. Add natural supplements to your diet to avoid constipation, gas formation. Have good oil massage with seasame oil of the effected parts of body including head . Speak loudly to avoid speech blocks/ fumbling/ non clarity . Drink warm water ( 2 litre a day) to avoid blood clot or shortness of breath. Remain busy and stress free for mood upswing. Every person has different symptoms and one medicine cannot work for all.
Please do not wait for this disease to get enhanced. Start taking medicine immediately but the low dose.
I've heard time release is the best, but still very expensive.
I am on rasagellin 1 mg once a day and pramirol SR 0.52 two tablets twice a day. My neurologist started with rasagellin 0.5 mg once a day for six months. Had my SPECT and PET Scan and then increased to rasagellin 1 mg once a day and added Pramirol SR 0.26 two tablets twice a day and now this. But he emphasized on exercise only and said that it's the best remedy rather than medicine
My husband didn't take the medication initially either. We ordered mucuna and started thiamine. (but the nausea was an issue) It was after he started c/l that his symptoms regressed. He could exercise longer and harder and that is so important. However, he took lower than the prescribed dose. That was enough for him. His pinching like tremor is now his only symptom. His arm swing even came back! I definitely credit thiamine HCL, but c/l helped him to get where he is at now.
Getting a second opinion, is always a way to get a better perspective on decision making. Once I had three different Doctor’s diagnosis of my PD, I knew I had to exercise to keep mobility, research ways to help myself, and have the best movement disorders neurologist help me on my journey, of dealing with PD on a daily basis.
Like most of us, you describe primarily the motor symptoms, which are mild. But there are many other symptoms of PD, some of which precede motor symptoms. I made a list of “autonomic dysfunction” symptoms from an article someone sent in to this site.
It says that 89% of PWP show symptoms of gastric dysfunction before PD diagnosis. This includes weight loss, drooling, swallowing problems, gastric emptying delay, SIBO, constipation and defecatory dysfunction.
There are also urogenital dysfunctions like incontinence, nocturia, frequent urination, erectile dysfunction, ejaculation reduction and hypersexuality.
In addition, they list cardiovascular dysfunctions like orthostatic hypotension and postprandial hypotension.
And the big one they don’t list is sleep fragmentation.
If any of these symptoms are present, you might want to consider c/l even if motor symptoms aren’t so bad. It helps.
Very helpful advice! Thank you!
I would encourage you to get a copy of "Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson's Disease," by J. Eric Ahlskog, PhD, MD, Mayo Clinic. Mayo Clin Proc. 2011;86(12):1211-1216. The article has "...a dozen basic principles, or 'tips,' for treatment of seniors with PD." To answer your question, Tip 4 is summarized as urging: "You cannot save the best for last." The author says for various reasons that, "...this likely represent a lost opportunity"(for benefit and assistance to the patient). I found this article one of the best I have ever read about at least the initial, if not the long-term, best way to administer and take carb/levo. God Bless You and your love one. Merry Christmas 2019!
Take the meds and exercise. I ride 80 miles per week. I have been stable since diagnosed in 2014.
Take mucuna pruriens instead. It is natural, not chemicals, and doesn't cause side effects, like dyskinesia. My husband has been taking it for 5 years, and has kept his PD at bay. Dr. Marty Hinz came up with the formula. Also, we learned from Dr. John Gray, and how he cured himself with mucuna. We have just started B1. I would strongly recommend starting that right away. Avoid the chemicals. Mucuna works better. Dr. Costantini knows very little about mucuna.
- how much does your husband take and does he take a capsule or mixed with something?
He is now up to 2600 mg a day. He takes (4) 650 mg mucuna 5 x a day. He also takes 2000 mg. of tyrosiene 5 x a day, and 400 mg 5-htp, and 1000 mg L- cystiene. His only motor symptoms after 5 years are tremor in right hand, and lip tremor. We are newly taking B1. Read Dr. John Gray. Every PD patient is different; each one is the experimental model. We arrived at the dosage by experimentation.
What is the name of his book? Sorry for all the questions.
A diagnosis of PD is very scary. In my opinion, you want to do the most natural treatments possible. Vitamin B1 fits into that category.
When we tried mucuna and amino acids protocol, we had to play with the dosage. We started out very small, then increased it until he seemed to respond better. I am one who believes that there are no pharmaceuticals that cure chronic diseases. We recently helped a man who was on 25 different medications, 5 of them for high blood pressure. He was dying and on hospice. Now, he is off all drugs and his blood pressure is normal. He is active and certainly is not on oxygen 24/7. That's just one example. Follow the money.
I just found it online. He had Parkinson's years ago, caught it early enough, and treated it with mucuna. Dr. Marty Hinz has abstracts he published on PD and mucuna. We have also used the powder, but, that does not seem to be as easy to regulate. My husband's PD was induced by being sprayed with agent orange during the VietNam war. Most PD is caused by toxins.
I believe that c/l definitely helps ease the symptoms but try to live with taking the least amount possible. Exercising a little more (beyond what you think you can do) will help slow progression for most PwP's. Try something like Rock Steady Boxing. And make sure you exercise consistently at least 3 days a week.
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