HAPPIER DRUG FREE

[shanaandbear]

Hi Fellow PWP! ❤️ I have had adverse reactions to PD drugs, and they don’t seem to help me much. So, I quit taking my Selegiline and C/L....and only take a mild anti depressant. No other drugs at all. Yes, I still have my PD symptoms, but I’m living a pretty normal life. I feel like the drugs are worse than the problem. Anyone else gone the drug-free route? I’ve had PD for about seven years.

[PixelPaul]

You didn't mention for how long you have had PD? While I congratulate you on living med-free at the moment, my guess is that this becomes less of a realistic option as the years go by. So enjoy it while you can!

[Hidden]

Seven years is the limit. Time to start on levodopa and high dose B1.

[shanaandbear in reply to Hidden]

Maybe the high dose B1...but not the levodopa.

[JAS9]

My dx was 2008. My neuro tried giving me several non-C/L drugs but none helped and some of them caused hallucinations. My PD symptoms were somewhat manageable and I kept working until 2012 when I changed neuros and the new one tried Sinemet, which just made me very sick. I gave up on a normal life and retired in 2013 (I was 56). 3 more years went by with deepening PD symptoms and no meds. To be clear, up to this point I'd gone without any PD meds (except for a few days at a time during which I tried various drugs and quit them). Many PwP have never experienced moderately advanced PD without meds, but I have and it's no picnic. But the experience taught me to be able to tell the difference between PD symptoms and symptoms caused by meds.

In 2016, another neuro gave me Rytary and it's been a miracle. Rytary's time-released capsules deliver C/L over a 4 hour period. I don't know why I don't react badly to it, but I guess the Sinemet hit my system with a big load that it couldn't handle? The only problem is that I had been taking a fairly large daily dose and became a bit over-medicated, so I've had to reduce it to avoid or delay dyskinesia and the other problems associated with long-term L-dopa enhancing drugs. I've often wondered if I would choose to go back to little or no meds to avoid the dyskinesia, and I think that I would. Advanced PD without meds might be a better life than having both med-induced Parkinsonism and PD. But I'm not there yet.

[park_bear in reply to JAS9]

Immediate-release Sinemet seems to get prescribed by default instead of the time release version and does exactly this:

>hit my system with a big load that it couldn't handle

[Astra7]

That’s great to hear. Unfortunately for me I needs the meds, but I love to hear about people going ok without them.

[shanaandbear in reply to Astra7]

For about a month now. My tremor is no worse....and I’m feeling so much better and more like myself. I hated how I felt on the drugs. I had an extreme drop in my blood pressure that caused me to pass out and fall head first on our tile kitchen floor. I was nine days in the trauma ICU at the U of U Hospital. It’s not worth it to me to be under the influence of these drugs! Thanks for your responses everyone! Hugs!

[Juliegrace]

How long have you been med free?

[shanaandbear in reply to Juliegrace]

Over a month and doing so much better! Hugs!

[ryanJames1]

Med free 6 years no thought to change that

[GymBag]

Diagnosing PD is a big problem, there are so many things that look like PD. Familiar Tremor is a good example. A nice lady joined our PD support group. Her family Doctor had diagnosed PD and put her on a small dose of L/C and it did not seem to be helping. Every time she tried to do something she would shake and that was very annoying and tiring. I told her to go back to him and get a referral to a Neurologist, because I did not believe she had PD. Once she was getting the proper medication for Familiar Tremor it became less of a problem for her plus she did not have to suffer the side effects of the PD meds . General rule of thumb , if the PD medication does not work then it is not PD. Parkies shake at rest and stop (sort of ) at concentration.

[FergusonJR in reply to GymBag]

And in the beginning, that shake (if u have shakes at all) is unilateral, not both sides of the body.

[shanaandbear in reply to GymBag]

I have ten of the PD symptoms. I lost my sense of smell first...and have a cough that’s not due to a cold or congestion. The left hand tremor started in 2014. I was diagnosed with PD in 2015. Drugs caused terrible reactions, including passing out and panic attacks. Not worth it to me. I am doing so much better drug free. Walking, exercise, and gardening activities help to relieve the symptoms. Hugs!

[Lindylanka in reply to GymBag]

Approximately 30% od people with Parkinsons have no tremor. And if they do it will largely be a resting tremor. The key diagnostic of parkinsons was/is responsiveness to l-dopa, and these days is mostly confirmed by datscan. Approximately 6% of PWP scanned may have a false negative result.

[JohnPepper]

What a pleasure to hear this news. I hope it catches on for many other people. Well done!

[Binday]

Lovely to hear your news; so encouraging, I’m on a very small dose and want to come off it, I’m doing well only 2years in. Not sure why I don’t, your post has made me think again thank you

[ddmagee1]

To each his own. When symptoms are somewhat mild and controllable, where they do not interfere with one’s daily life, go for it, and don’t take the PD medicines, if that is your wish. Enjoy that time, and I sincerely hope that PD doesn’t progress, and make you feel, that you don’t have a choice, in order to function in daily life, like what has happened to me. Without Sinemet, I am stiff, drop things, freeze in place, and have many symptoms of PD progression. So, I am dependent on PD medicine, in order to move well enough etc. in my daily life. So PD symptoms vary widely, for each person with a PD diagnosis.

[MarionP in reply to ddmagee1]

"To each his own..." Eggzackly!

[jayb12]

I was diagnosed in 2010 off medications till 2015 then always trying to keep on the lowest possible feel better without as well they don't heal but they do help sometimes. the medical industry is money care, not health care, pharmaceutical companies are fraudulent.

[tarz in reply to jayb12]

You got that right, jayb. This is why I prefer the time-tested over 3 thousand years, Ayurvedic's wholistic health wisdom of the sages. For example, "An Ayurvedic diet is an eating plan that provides guidelines for when you eat, what you eat, and how you eat to boost your health, prevent or manage disease, and maintain wellness. If you follow an Ayurvedic diet, you'll eat primarily whole or minimally processed foods and practice mindful eating rituals."

[2bats]

Dx’d 2011, 16mg Ropinirole and 16 Sinemet a day by June 2018. Went on Keto Diet and tapered meds to zero. Now pretty much Carnivore Diet and just gone back on 3 Sinemet a day (25/100) because I got fed up with the tremors and being slow. Seeing how it goes... Best regards, Phil 2bats

[sudoku123]

Shana,

This is great. I wish to hear your favorite vitamins and supplement. Something help you to go without drugs...

Thank you.

[shanaandbear in reply to sudoku123]

Hi Sudoku....sorry to take so long to respond! I am starting to take the B1, but I’m not consistent taking anything! I’ll keep you posted on what’s working. ❤️😘

[Jlloy5]

I take frequent "holidays" from my c/l, and am MUCH happier without them. 12 years in, DBS scheduled, and my goal is eliminate meds after surgery. I love this post, thanks for sharing!

[Binday in reply to Jlloy5]

Hi just reading through posts again, can you tell me about your meds ‘holidays’ please. Do you taper off then build up? How often and for how long do you take each time. Thank you.

[Jlloy5 in reply to Binday]

I don't taper off. I just quit taking them and go as long as I can without them which is typically 3 days before the tremors and bradykensia drive me insane. I definitely can't leave the house which is often a challenge with 3 kids. I do this every opportunity I get , which is usually every 3/4 weeks. My dr is aware of this and is good with it. I typically take c/l 25/100 every 1.5 hours. Let me know if you have any more questions.

[Binday in reply to Jlloy5]

Thank you for your reply. Well done for doing it as you say not easy but especially with 3 kids! Really hope the dbs works well for you.

[Jlloy5 in reply to Binday]

Thanks so much!

[Ajssister]

Super great to hear this. My brother has PD, but he is of the idea “if one is good, two are better...” and that’s his plan with meds. I have done my best to help him with his mindset, diet, vitamins, exercise but he cannot trust life without medication. It’s too sad.

I applaud your courage and if this is my future I know I will do what you’re doing and trust myself.

God bless you and keep us all posted. Though I would also do the B-1.

[Astra7 in reply to Ajssister]

If it works for him that’s great. There is no absolute truth that more meds are bad for you. Just conjecture and a strong feeling that pharmaceutical company’s are crooks!

[reedboat2]

I'm only 2 years in but managing pretty well with Mucuna, exercise, HFLC diet, B1 injections, nutritional supplements, good quality sleep, and stress reduction. For me B1 makes a big difference. Best of luck staying off those Rx's.

[Chaise]

Yes I a drug free. Have never taken them had PD for 3.5 years. Intend never to take drugs . I use exercise and some supplements . So far so good. Have a tremor I my left arm , slightly in left leg. But find bootcamp, yoga and walking all help.

[Ktno]

I have been using a $700 infrared “helmet” from ‘Redlights on the brain’ website out of Australia. I use it 25 min twice a day. I only take 1 sinemet in morning. Although I do not believe the actual helmet is advertised on site, the email links will connect you to a dr. Catherine to get info.

[sue2000web]

Well done. Look at vitamin b1 protocol. Dr Constantini. This may help u even more