Greg thru the keyhole.: I´ve chosen this... - Cure Parkinson's

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Greg thru the keyhole.

gregorio profile image
23 Replies

I´ve chosen this title as I am going to give you a look at my life as it is, as it was when diagnosed and how I am moving forward as many people have been asking about my regime. I will keep to the facts . I am 74 this Nov and have tremor dominant PD. About 6 yr ago my GP suggested I get checked by a Neuro, I had a tremor in my right thumb, I had lost my smell about 3 yrs before and suffered from dry eyes. A battery of tests , MRI and so on confirmed PD. I was on my own in a strange hospital car park sitting in my car with 2 prescriptions in my hand, not knowing what was happening and crying my eyes out (very dramatic). With no idea of what was going on, ignorant about PD. It was straight back home and onto Google to find out how long I had to live. I suppose by nature I am an inquisitive person and will take things apart to see how they work; it was second nature to get as much info as possible but I had no idea the enormity of the task I was taking on. Got my prescriptions and it was not long before I became lethargic and moody with weird energy levels on and off, jumping the story a bit, I worked out I was taking medication to treat a load of symptoms I didn't have and that as far as I could research would do nothing to stop the PD progression and just made me feel like shit. Pills went in the bin.

Dive in.

Got on groups, forums, FB pages, medical sites, YouTube, anything related to my disease, it consumed me and I was willing to soak up all the info I could find. It is hard to remember but I think the first move was my diet change, a lot of what I was reading was telling me the latest research saying this might all have started in the gut. On to a Keto diet, next thing jumping out at me was exorcise, 3 games a week of golf, walking, not in a buggy. Supplements to control inflammation of the brain, high dose B1, NAC, NADH, and dozens more, Amazon were doing well from me, I was taking about 12 pills a day or more, you name it, I stuck it in my mouth. 6 months in and I started taking control of the situation which was getting a little out of hand and started dropping some pills as I learnt more about their efficacy. Red light therapy was making noises so bought a bulb from Amazon, rigged up a system to get it shining on my head ( would have bought a helmet and still might, expensive) about 30 mins a day..

Skip 3/4 years.

The tremor was now my right hand, a few cramps which I don't get now, drooling which is very little now, not great sleep but take 10mg melatonin now and constipation from time to time, fixed now with ground flax seed on my breakfast every morning, was 12 kilos lighter and feeling as fit as a butchers dog. I thought I might be onto something and wanted to share so started my FB page and have met with a few people locally to share experiences.

Now today.

Start the day with 500mg B1, 800mg Nac, Macuna pill, B3 pill , Ginkgo pill and a 20mg NADH sublingual. will wait half an hour before or after breakfast to take pills. Breakfast every day, avocado, goat yogurt, blueberries and a sprinkling of ground flax seed, big mug coffee. Lunch if I eat one, sauerkraut (so good for the gut), tin sardines in olive oil or some eggs or whatever, on the keto diet I usually miss lunch as not hungry. Evening 500mg B1 and macuna tab. eat 5/6 o´clock and maybe later a cookie and green tea while watching TV, homemade choc/chip made from almond flour. I have many bottles of other supplement pills left and sometimes take one or two, hate wasting money, will use them up. On the upside after golf I sit at the table and don’t go to the bar, I spill anything I’m given to carry. I walk any chance I get, park at the end of supermarket car parks, never use lifts in buildings and so on.

Bed with 10mg melatonin and very very occasionally a sleeping pill, Mr PD makes sure we don't get a straight 8 hours so i´ve accepted it.

My current status .

I have pronounced tremor in my right hand, sometimes while driving I get small tremor in right leg, I have a tremor in my jaw but chew gum so it goes away and about a year ago I developed a small tremor in my left hand, stable at the moment. I function quite normally, at the moment I live alone. So that is it really, I might up the B1 to see if it helps the tremors and I spend at least 12 hours a week looking and learning and waiting for on going phase 3 trials. I believe that a system as complicated as the brain can find work arounds for blocked or damaged pathways, lets hope that’s true.

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gregorio
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23 Replies
Obiora profile image
Obiora

Thats great! Are you still medication free?

gregorio profile image
gregorio in reply toObiora

yes

evenshoshan profile image
evenshoshan in reply togregorio

Hi Gregorio, I really enjoyed reading your current journey with PD, sincere and informative. May I ask which Mucuna pills you are taking please ? Any specific reasons for that choice ?

gregorio profile image
gregorio in reply toevenshoshan

Have been using NOW brand for years, no particular reason only easy to get over here, recently ordered B1 from Vitacost so bought their name brand macuna as it was well priced

Bolt_Upright profile image
Bolt_Upright

Great job. Which type of B3 are you taking please (and how much)? I take a gram of NA twice a day (which may be too much).

gregorio profile image
gregorio in reply toBolt_Upright

2000 IE B3 in the morning, I only added B3 about 3 months ago, cant say i´ve noticed any result good or bad but will keep them, cheap and good for you anyway, lot of good reviews from PDers

Bolt_Upright profile image
Bolt_Upright in reply togregorio

What type of B3?

Nicotinic Acid? Niacinamide (nicotinamide)? Nicotinamide Riboside (NR)? Nicotinamide Mononucleotide (NMN)?

I stick to Nicotinic Acid. It is cheap, it is the only one that activates GPR109A, it has the most research. But I could be wrong. I have a High School degree :)

Smittybear7 profile image
Smittybear7

What medication did they prescribe. How did you know how much munaca to take.? Does the b1 you take at night affect your sleep. I'm currently taking 500b1 from vitacost. I still have issues with constipation, gas and bloating. My tremor in my hand and leg come randomly. Leg ??spasm or tremors or cramps. I also have osteoporosis and am taking supplements for both. Low. Energy. I'm afraid to increase b1 for fear of things getting worse. I can live with what is going on now but would like to eliminate medication. Currently on c/l at 6AM, 10AM, 2PM, 6PM. (25-100).Any advise would be appreciated. Thanks and good luck!

gregorio profile image
gregorio in reply toSmittybear7

I cant advise, sorry, not a doctor, I went into some detail about what seems to work for me in my message above, the difference is I never got into the meds in the first place. I was prescribed a load of medication Azalect, C/L to treat symptoms I didnt have at the start of my PD, that made no sense to me. I am 6 yrs in and might have to go with something at some stage but am tremor dominent and there is nothing that can stop them yet. I take my evening B! about 4/5 o´clock. I guess you just have to read as much as you can and try differennt things.

JayPwP profile image
JayPwP in reply toSmittybear7

I have started 1 boiled and refrigerated potato, grated and mixed with minced onion every evening. Also taking an hour after the potatoes, a cup of rolled gluten free oats, soaked overnight in water, rinsed in the morning and refrigerated.

Initial two days there was a lot of Gas but the bowel movements have become regular and strain free.

Smittybear7 profile image
Smittybear7 in reply toJayPwP

Thanks

TurtlewPD profile image
TurtlewPD

Look up Zhittya Genesis Medicine Inc., it is the best treatment I have experienced for PPD. I now have hope!

Rupa88 profile image
Rupa88 in reply toTurtlewPD

that one is a big fraud

Pixelpixie profile image
Pixelpixie in reply toTurtlewPD

I’ve read their stuff. It’s all geared to investors with little to show for it. I walked away

TurtlewPD profile image
TurtlewPD

Ruppa88, are you speaking from experience? I am and I must say you are wrong, I have had the treatment and have never felt better. After 15 years of decline and dealing with PD I feel near normal again.

Esperanto profile image
Esperanto in reply toTurtlewPD

If Zhittya indeed has THE panacea for treating PD, why don't we know about this? We are still waiting for serious research results. I understand that $50,000 must be invested first, before you can participate in the next steps at all. That's why I'm surprised that you are already symptom-free. Please, can you give a little more details of the treatment you have undergone?

TurtlewPD profile image
TurtlewPD in reply toEsperanto

The reason for the lack of awareness, in my opinion, is Zhittya is just beginning to get the needed data to apply to the FDA to start a trial. The FDA requires certain data to receive approval to begin a trial. The FDA in turn does not allow drugs to be given to humans without their approval. Thus the great FDA catch 22. The way Zhittya and many others get the necessary data is to conduct patient funded treatments outside the US. This is where Zhittya is with FGF-1. Having been through the treatment, I have experienced such improvements to my PD symptoms, I now have hope for a better life than what the FDA and the medical community offers with existing medicines and procedures like DBS. I wholeheartedly think before jumping to any conclusions anyone should check them out at zgm.care. As I have witnessed the company is totally above board, it has very high standards and truly wants to find a cure for PD.

Esperanto profile image
Esperanto in reply toTurtlewPD

I don't see a Turtle thru the keyhole. This does not look like a testimony from someone who is virtually symptom-free after 15 years PD, but rather like a Zhittya employee who hopes to acquire potential customers in this interesting target group by opposing the FDA system. Perhaps I’m wrong, with my PD I unfortunately have reduced judgement.

TurtlewPD profile image
TurtlewPD in reply toEsperanto

Esperanto, I am definitely not a Zhittya employee or spokesperson nor am I a scammer. I am just a private person with PD who has a new lease on life. To be perfectly honest, this is my first time responding with some of my story and opinions. Maybe this is not the correct venue, I have a lot to learn. I do want to impart to you a few rules I live by 1) be honest and ethical; 2) be a fighter for yourself; 3) if you do nothing, nothing changes; 4) if you lean forward, a willingness to look for and consider new, out of the box ideas, you have everything to gain. My story in a turtle shell, the worst symptom for me having PD was the loss of my cognitive abilities. This loss cost me my career that I loved being a part of. The next worst were the tremors and the dizziness causing imbalance. Before the treatment I was taking 9 Rytary capsules of the highest strength per day with all of the bad side effects with little hope. 3 weeks after receiving the FGF-1 treatment I had my cognitive abilities back, however the tremors and the imbalance only lessened. I am now taking 2 Rytary per day and feeling near normal. Zhittya, after the initial treatment works with all of the participants to determine what is needed as a next logical step for better improvement. For me, I suggested redosing and have now learned it will happen this month. I am excited to have the opportunity to further improve. I must also say that my PD Movement Specialist does not share the same opinion, he follows the current medical practices and on the one hand thinks this treatment is the worst thing I have done and yet on the other hand comments on how well I am doing. I used this venue with the hope this little synopsis into me and my story will help others to know there are other capabilities out there, albeit some at a cost. I am not out to scam anyone, it is not how I was raised. If one wants to think that, so be it. I know what I have experienced and I no longer want to be a Turtle with PD.

Psalmody profile image
Psalmody

thanks for your post!

Glad it’s working for you.

I’ll keep yr post for reference

Well done

Shorebird profile image
Shorebird

Thank you so much for sharing. I am so grateful for the generous, likeminded folks on this site- all here to help those with PD and those of us loving/living with someone with PD.

PalmSprings profile image
PalmSprings

Sounds great! I am doing several similar things: diet, golf, walk, sauerkraut, sardines. Best of luck to you!

gregorio profile image
gregorio in reply toPalmSprings

every day lunch, Sardines, Sauerkraut and a gurkin👍

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