Living with Parkinson's Disease - Meet others & come say hi

Hi, @nyparkie - wanted to check in with you and see how things are going with your Parkinson's?

@tllaes, you had talked about your wife experiencing some rigidity and vise grips when she was holding onto something. How is she doing lately?

I was diagnosed in in 2012. In six years the Parkinson's symptoms became disabling. All this time I tried many of the standard Parkinson meds trying to find the right fit. I researched on Google for alternatives. Then I found B1 and Doc Costantini. He is a wonderful doctor and human being (charitable). He has office in Italy. If you want to travel to his office for an appointment, he has office exam fee. IF you cannot or do not want to travel to Italy, he will help you via internet without charge. He speaks only Italian but has associate doctor and staff with English language. Seven month ago, through internet, the doctor advised me on thiamine hcl and recommended my dose. At no charge.
Connect with me
https://healthunlocked.com/user/royprop
https://healthunlocked.com/parkinsonsmovement
B1 Thiamine HCL therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to IM B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamin hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Google search: Doctor Costantini Parkinson
Dr Antonio Costantini, carapetata@libero.it
https://highdosethiamine.org
https://highdosethiamine.org/therapy-2/
https://m.facebook.com/groups/232260083958797?view=info
I am retired and spend my free time informing (PwP) People with Parkinson's. Please ask for more information.

Parkinson's Relief, Questions and Answers Link:
https://healthunlocked.com/parkinsonsmovement/posts/138096744/dr.-costantini-dr.-colangeli-answer-40-frequently-asked-questions-faqs-about-thiamine-b1-protocol-email-carapetata-libero.it

Did you start with thiamine when first diagnosed? Do you have to meet certain criteria to get on it? Do you know if most doctors prescribe it. I’m not on Facebook. Thx for any info you can give me.

Thank you again for this information!! I’m going to start my mom on this. They have added primidone and clonazepam to her card/Levo. Has really made her sleep and leg weakness. I’m all about a less aggressive way to treat the tremors.

Normal B1 blood level is to be expected. The therapy involves increasing the thiamine hcl level (Vitacost thiamine hcl in 500mg easy swallow capsules).
My personal experience - The positives: no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
parkinson's high dose thiamine hcl
https://www.facebook.com/groups/232260083958797/about/
https://highdosethiamine.org/therapy-2/
Tremor is not easily impacted by thiamine hcl. It takes time with thiamine hcl and carbidopa/levodopa.

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

@dfelix

Hello Dennis

Your concerns about the future are certainly understandable. While PD cannot be cured it can be controlled with the right kinds of medicine and an active lifestyle. Encourage your wife to get involved with physical therapy (especially the type for PD) and to remain active. PD is not a disease that you can take "lying down" you must be active. Those who are the most successful in keeping their disability at a moderate level are those who remain active.

Many hospitals also offer caregiver support groups where you can discuss your fears/anxieties about dealing with a loved one who has a chronic illness. Please give that a try!

Keep posting and let me know of your concerns.

Teresa

I'm Dennis. My wife was recently diagnosed with PD. don't know what to expect. A little scary about future.

Pull Test
Roys Pull Test 08/14/2018
First result is typical when one has Parkinson's. Second pull after foot is positioned for better recovery and balance. I was first diagnosed with Parkinson's in the year 2012. I credit my good condition to Doc. Costantini's high dose thiamine hcl advice.
(continue)
B1 Thiamine HCL therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to IM injection B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamin hcl stops the progression forever...".
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol.

Hi there
I take an old med called
Diazepam for anxiety. The Dr put me on it as is effective for a longer period of time than some of the newer drugs. I find it works very well but does make me very tired