Medication free

[fruitma]

Is anyone here with PD and not on any kind of medication?

[india245]

me 😊 I noticed my first in 2018, but with hindsight could see that sleep and constipation have been issues for about 15 to 20 years

I think lots of people begin their journey without medication – some for many years

[MBAnderson]

I'm not. Diagnosed in 2011.

[fruitma in reply to MBAnderson]

How do you managed your symptoms?

[MBAnderson in reply to fruitma]

I take the usual supplements, exercise a fair amount daily, and have had bilateral MRg FUS Pallidothalamic Tracktotomy 4 years ago, but have gait, balance, & voice issues.

[fruitma in reply to MBAnderson]

How old are you?

[MBAnderson in reply to fruitma]

78

[Tayogi in reply to MBAnderson]

Did you get the gait and speech issues from the MRg FUS? I'm 37 and currently looking into it. Seems to be the best option for me.

[MBAnderson in reply to Tayogi]

I don't believe so. They began a couple years later.

[fruitma in reply to MBAnderson]

How do you managed the symptoms?

[MBAnderson in reply to fruitma]

I answered above

[LorenzaS]

I am not taking any medications, only vitamin and supplements. I don’t have tremor but stiffness on left side and slowness. 60 yrs old , diagnosed 2 years ago but symptoms since end 2019

[Possmenatt]

I don’t take any prescription meds although of course they were the only recommendations by 2 neurologists. Symptoms around 10 years. Neurologists dx 2.1/2 years ago. Take usual supplements. A bit slower than I was but age adjusted I think I’m doing pretty good. Still working.

[fruitma in reply to Possmenatt]

Hi, what kind of suppliments do you take?

[Possmenatt in reply to fruitma]

Hi fruitma

I’ll give an example of my average day, I’m sure there could be improvements I could make with some clashes and overlaps and of course it will be tweaked when required. Nevertheless I think we all need a plan that works for our individual circumstances. For me from dx I embraced my new needs 😃

Im on no prescribed medication. 58 and 75kgs and I kick off the day by getting up at 5( usually sleep well).

I start my day with

1/2tbs of Zandopa powder (drink)

1x magnesium glycinate 500mg. (100mg of available Mag)

B1 25mg hcl oral twice a week.

Vitamin B2 100mg

B12 complex methyl,adeno,hydro cobalamin 1000ug some days.

I have a green tea while driving to work.

Around 7 I’ll have some fruit toast and a banana and around 10.30 I’ll have some supplements.

Vitamin C liposomal 750mg

Mucuna pruriens. 2 x 120mg levodopa (15%) (now)

NR 500mg

Ginkgo Biloba 120mg

L-Glutathione liposomal 250 mg

I’m usually on the move so around 12.30 I have a prepared mix (100g berry muesli. 150g blueberries ,small probiotic yogurt( the only dairy I’ll have), chopped apple). Topped with Ceylon cinnamon 1/3tsp

Around 2.30 I have more supplements.

Vitamin C liposomal 750mg

Mucuna pruriens. 2 x 120mg (now)

Pea luteolin 650mg 50mg

Krill 1000mg

Turmeric curcumin Merva 500mg

Ginkgo Biloba 120mg

CoQ10 300mg

Quercetin phospholipid 400mg.

I’ll have another Magnesium before bed.

The above routine has been stable for around 18 months.

I’m currently evaluating

Sulforaphane 400mg

Rhodiola rosea 400mg

Jujube seeds Chew 20-25 seeds

I work 8-10 hr days in a physical job. I cook a healthy varied diet for the family. I wind down by reading up on here etc 😃 with a glass of 🍷 and dark 🍫

That’s roughly my day and I think I have sufficient energy (age adjusted )😃. A vast improvement from when I didn’t know I had PD and severe spinal arthritis. My main symptoms now are slight tremor and a reduction of fine motor skills in one hand. I generally feel great and if I can maintain this I’ll count myself very lucky. I’ve vastly improved the Brain fog. Fatigue. Walking, back pain etc and I’m left with optimism and a positive attitude. 😃.

[coffeewithcream in reply to Possmenatt]

You might want to research boron supplements for arthritis. Love your positive attitude!😃

[Weng888]

I was diagnosed in May 23. But my right hand started tremoring in Mar 23. I’m not on western medication.

[Tinysuite]

My husband is not on parkinsons meds. He sees a pnp, a nurologist who is setting him up for dbs. He is also seeing a naturepath for parkinsons and a kinesiologist. The last thing he is doing is tms. This combo has been extremely beneficial. I have done alot of research figuring out what exactly parkinsons is.

[MarkPrana in reply to Tinysuite]

Thanks for sharing Tinysuite.

Can I ask how you've found the TMS?

It's not something I've seen much discussion on for PD, although very interested to find out more.

[gomelgo in reply to MarkPrana]

TMS?

[MarkPrana in reply to gomelgo]

"transcranial magnetic stimulation"

I've heard good reports for its use in depression.

It would be awesome news if it could help with Parkinson's progression.

[SuuSuu]

I was diagnosed in 2013 at age of 55. Basically no tremor (well, my tongue tremors and once in awhile a finger) slow and stiff and now balance issues and multiple NMS. Have chosen to not do any prescription meds; they all have side effects and only treat symptoms. I can manage my symptoms thus far and this way I know my symptoms are PD and not med side effects. Meds have a place, and someday I may chose that path, but not now.

I've done glutathione (or NAC) from the start. I'm stiffer when I don't take it. Also take Vit C, mannitol, lion's mane mushroom and Protandim (a Nrf2 synergizer). Just started B1 therapy last month.

I've been vegan for 35+ years, I exercise, have low stress and know that God walks this path with me. My impression is that progression is slow.

[coffeewithcream]

When I was diagnosed in 2018 neurologist told me there were no medications that would help the type of tremors that I had (Head tremors). He thought I was a candidate for DBS. At that time I didn't feel my symptoms were bad enough to do something so drastic (brain surgery). I began doing my own research and learned that my amalgam filling were potential cause. After having them removed some of my symptoms reversed, most notably my handwriting returned to normal, started swinging my arms again while walking and what I call brain fog, but is really an inability to turn thoughts into words, was gone.

I still have tremors and some muscle stiffness. I take some supplements, focus a lot on gut health, keeping inflammation low and exercise. Also getting enough sleep is important.

[crewmanwhite]

I was diagnosed in 1995 and again in 1996. I had stage 4 symptoms.

I chose to do without meds as long as possible and never took them. I still don't need ag medication and rarely have any symptoms - just a mild tremor under great stress.

[Pixelpixie]

I was Dxd in 2020 and am 73. Although my MDS pushes me to take meds, I don’t. I have a unilateral tremor and a small amount of stiffness on that side. I do take a list of supplements, mostly antioxidants, and probiotics. I exercise 6/days a week w vigorous aerobics and weights. I’m also trying HDT

[gomelgo in reply to Pixelpixie]

HDT?

[Pixelpixie in reply to gomelgo]

High Dose Thiamine (B1)

[gregorio]

🤚

[RTT1961]

Hi, good day.

Yes, I was diagnosed with unilateral PD on February 2023 and I´m not taking any medication yet. Left hand tremmors started at least 2-3 years before than that. I´m currently 63

I´m taking Magnesium and a complete B complex supplements along with photobiomodulation therapy that has not make any improovement yet but hope that it will.

I take physical therapy with aPD specialized therapist 3 times a week and try to exercise as much as I can.

[kaufmanhighnote in reply to RTT1961]

I have probably PSP, a Parkinson's Plus variant, and the Parkinson's symptoms do not respond at all to medication. With PSP I have all the symptoms associated with PD only after 3 years since diagnosis, except for tremors.

[gomelgo]

I was diagnosed in May 2022, not taking meds for pd but do take flexorilevery now and then at night for my shoulder injury which was related to my frozen shoulder. I have seen an increase in my right side unilateral tremors lately, but have been under a lot of stress. Currently taking mucuna and green tea phytosome. Not getting as much exercise as I should and am on week two of my cross country road trip which I have dreamed of for decades.

[quiz0019]

Diagnosed in 2016 but symptoms back 20 years before then. No Parkinsons meds but considering something like propranolol for tremors that amp up under stress.

[cceelen]

I was diagnosed during the pandemic, over zoom! I think I had been having symptoms for five or six years before that but was too busy to really think much about them. It was a resting tremor in my hands that took me to the neurologist. I'm 69.

The neurologist encouraged me to start meds immediately even though I told her that my symptoms were slight. I searched but was unable to find any alternative to meds, it seems like everything online was encouraging the use of meds and so I tried them. I am sensitive and had various side effects, so for two years I was off and on basic starting doses, of several different meds.

Then I came across information that confirmed my fears, that medication was not doing me any favors! So I began the journey of getting off. It has been difficult! I have been completely off meds for a year now, I had to get off very slowly, people can die from withdrawal type problems.

The recovery program I am on can take a long time and make me worse before I get better. That’s where I am now. Fairly non-functional hopeful things will look up.

My symptoms are mostly tremor, freezing, stutter walking and fatigue. Certain things are better, especially my dystonia when trying to relax. I think that was drug-related.

[fruitma in reply to cceelen]

What kind of medication were you on?

[cceelen]

I tried a variety, mostlu c/l , the others I wasn't on for very long