Shalom316: my story begins with my left... - Cure Parkinson's

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Shalom316

Shililly profile image
20 Replies

my story begins with my left hip replacement over two years ago and virtually started having symptoms afterwards primarily a very slight tremor in my left hand . I tried chiropractors, Acupuncture, and eventually went to a neurologist and received a Parkinson‘s diagnosis. I am on C/L and have been researching alternative treatments and have found some very interesting possibilities. I haven’t made a commitment to any of them yet but will soon after more research and prayer. I just recently discovered this Website/forum and it’s been a real blessing. I live in Florida and I’m fortunate to be able to be outside all the time and find that swimming helps a lot. I am still working but slowing down, I am a flight attendant so it’s a bit demanding!

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Shililly profile image
Shililly
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20 Replies
park_bear profile image
park_bear

There are non-prescription disease modifying treatments that I and many others have found helpful. Implement the thiamine and the cinnamon one at a time and see how one works before proceeding with the other:

• High-dose thiamine. Dosing instructions and other information at the links. Allow four months for full effect:

b1parkinsons.org/

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

facebook.com/groups/parkins...

A good source of thiamine HCl is here:

vitacost.com/vitacost-vitam...

• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...

• Qigong. My story here:

healthunlocked.com/cure-par...

Bolt_Upright profile image
Bolt_Upright in reply topark_bear

How are you doing PB? Still holding steady?

park_bear profile image
park_bear in reply toBolt_Upright

Thanks for asking! Underlying symptoms more or less the same. What is different after 8 years post-diagnosis is less tolerance of levodopa medication. So I'm having to take less and putting up with more off time.

Bolt_Upright profile image
Bolt_Upright in reply topark_bear

Strange to say anything is great with PD, but years of steady symptoms is great. I may need to meditate and then head to Cinnabon! (Actually, I think/hope my 40 HZ Binaural Beats simulate meditation [and I know Cinnabon is not a source of Ceylon Cinnamon]). :)

Cinnabon
park_bear profile image
park_bear in reply toBolt_Upright

Getting high blood sugar just looking at that!

Esperanto profile image
Esperanto in reply toBolt_Upright

At least 4 grams of cinnamon! Hopefully you will limit the meditation sessions a bit 😉 It’s great to see people exploring different approaches to enhance their well-being!

Bolt_Upright profile image
Bolt_Upright

If you can retire comfortably, I think you should consider it. Removing stress is important.

And if you want friendly people to discuss PD strategies with, please join some of the Zoom calls MBAnderson is so nice to host. You will be welcomed.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

bandmember profile image
bandmember

That’s interesting. Mine started after a hip replacement as well. Slight tremor in left hand which gradually got worse. I went to see a neurologist because I couldn’t play my French horn. He took one look at my walking and diagnosed PD.

Riri2822 profile image
Riri2822

My dad has the same story.

Riri2822 profile image
Riri2822

he started with a slight tremor after his knee replacement. I asked his neurologist and he said it was a coincidence

katescape profile image
katescape

Mine started immediately after knee replacement surgery....

Bolt_Upright profile image
Bolt_Upright

These stories of PD after hip replacement remind me of the dangers of full anesthesia. Peter Falk started having Alzheimer's symptoms after full anesthesia for dental work.

Now I need to figure out if my REM Sleep Behavior Disorder started before or after my surgery in 2017.

Dementia risk after major elective surgery based on the route of anaesthesia: a propensity score-matched population-based cohort study "In this population based cohort study, the incidence of dementia among surgical patients undergoing general anaesthesia was higher than among those undergoing regional anaesthesia. Among patients undergoing general anaesthesia, inhalation anaesthesia was associated with a higher risk of dementia than noninhalation anaesthesia. Our results should be confirmed in a randomised controlled trial. " thelancet.com/journals/ecli...

DianeF profile image
DianeF

Please keep us posted on any new possibilities you discover. My story is similar. My symptoms developed almost immediately after a knee replacement at 55. I have been having back problems and recently saw a new orthopedic doctor. He told me he is extremely cautious with surgery and anesthesia in people who already have Parkinson’s as it can definitely exacerbate symptoms. He is the first doctor that has validated my suspicions. My theory has always been that I may have developed Parkinson’s much later in life but the surgery/anesthesia accelerated the process.

I would really like to see a study in this area as I have met quite a few people who have had similar experiences.

Good luck to you!

Jbeaner profile image
Jbeaner in reply toDianeF

Thanks

Benfotiamin may be of interest. In 10 yrs we’ll know more but who wants to wait?

Symbyx products have a definite protocol to follow which makes it easier for me.

Shililly profile image
Shililly in reply toJbeaner

hi there have you started symbyx? Both the PD care and the helmet? i would love to hear of your progress:) thanks

Jbeaner profile image
Jbeaner in reply toShililly

PD care comes first. Then the helmet is started after a month. They lay out the protocol and customer support is very responsive. I only started last week so. ask again Groundhog Day:)

Fava-1 profile image
Fava-1

welcome to the community. I farm organically and am outside most of the time in east TN. Yes, being outside is the best!

Jbeaner profile image
Jbeaner in reply toFava-1

What town are you near?

Jbeaner profile image
Jbeaner

Hi. I have been researching for a couple of years and feel there is promise in the Symbyx helmet and PD care red light therapy from Australia. It is costly but so are the many supplements I take. My chiropractor has stronger lasers but not at the same frequency of the clinical studies on PD patients which showed red light helped symptoms.

I also add to the B1 I get in supplements and try some of things for digestive issues and motility . Most important is getting anxiety under control.

Shililly profile image
Shililly in reply toJbeaner

Hi interesting that you’re considering doing the Symbyx infrared and you have done the B1 therapy as well. I’ve been looking into both of them and contacted Symbyx and as I suspected they said do one or the other treatments but not at the same time so I chose B1 first (mainly because it’s way less expensive than the B1!) and started about three weeks ago. Symbyx was very helpful and recommended that when I do start the infrared that they would consult with my chiropractor because she too has me on a lot of supplements!

So I’m doing the sublingual and I started with recommended 100 mg three times a week and it seems to be too much. I just started 50 mg yesterday. I also read someone else on here said that the sublingual was harder to find your sweet spot then the oral. I see your post was from two months ago and wondered what the progress was with the B1 and the PD care? Thanks

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