Amazing mum: Hi all hope your all staying... - Cure Parkinson's

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Amazing mum

Adrian54 profile image
Adrian54
•12 Replies

Hi all hope your all staying positive 😊

Mum diagnosed well over 20 years and struggling every day with bowels, movement is very poor now.

She takes sinamet every 4 hours 125 dose rare it works now. Any suggestions any new Medstead that might work?? So sad watching mum struggle every day.

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Adrian54 profile image
Adrian54
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12 Replies
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Enidah profile image
Enidah

Is there any particular reason that her dosage is so low? It seems that at this point after so many years it would be at least double that. Perhaps I misunderstood what you said.

Adrian54 profile image
Adrian54 in reply to Enidah

No you understand perfectly many thanks for a response. That is a low dose I think that with the other medication any higher dose would give her worse bouts of hallucinations and crying.

However as you say she should be on a much higher dose as it doesn't work and her mobility is none existant now. If only we had someone who actually gave a dam. NHS in devon horrific for parkinsons help.

Sorry for unloading you have your own problems.

ion_ion profile image
ion_ion in reply to Adrian54

High dose Thiamine HCL helps very well to solve the constipation issue and other non-motor problems.

Daleys profile image
Daleys

Dad struggled with bowel

Movements, I did my best to control it with diet and lactulose as we found the movicol and Senna messed him up. He’d have porridge with prunes mixed in for breakfast, little individual pots of fruit after lunch and some sort of fruity desert after dinner. Xx

Oceanflow profile image
Oceanflow in reply to Daleys

I’m curious- How do you mean that the movicol and senna messed him up?

I’m trying a bit of mannitol in my coffee and I think it’s helping loosen my bowels. Also B1 500 mg a day helps too.

adam43star profile image
adam43star

Hey try symprove it’s an amazing product. My mum has just started taking it. probiotic healthy gut stuff. Could help with kefir and kombucha too! Gut health very important good luck

iRobot profile image
iRobot

Thati seems to be a really low

iRobot profile image
iRobot

If the sinemet no longer works, there are other options such as medical marijuana or mecuna taken with mannitol. Please ask for more info.

kgold profile image
kgold

Magnesium citrate should get things moving but you need to be careful because you can overdo it and wind up on the other side. Also, an ayurvedic solution is triphala, which is a combination of 3 Indian herbs. It can help get things moving because it helps with gut function overall.

Adrian54,

Your mom's issues are 1) constipation and 2) the fact that her Sinemet dose is no longer adequate to maintain symptom relief and 3) both you and your mom are struggling with this new reality.

Both the high dose thiamine (HDT) and mannitol have helped with the constipation issue in multiple forum members. HDT adds in the ability to have synergy with Sinemet and some forum members have reported being able to decrease their Sinemet dose by adding HDT along side the Sinemet. The other advantage that HDT adds to this scenario is that the founder of the protocol, Dr. Costantini, has clearly stated that once you combine HDT with Sinemet and establish your correct dose for both, you will "never need" to ever increase your Sinemet dose again! Oh and he also said that once you are established at an optimal HDT dose, disease progression should be very significantly slowed or halted. All that sounds like just what your mom may need. If you would like to know more about HDT, here is a link to a page that will answer most if not all of your questions regarding HDT :

healthunlocked.com/parkinso...

If after reading that page, you want to know more about HDT, just click on my round icon and select from a small list of HDT related pages to read.

Good luck to you and your mom!

Art

mannp profile image
mannp

easilly (Art) knows what he’s saying. I take the (HDT) b1 Thiamine hcl and it is amazing. My years of constipation are gone. My arm swing returned. I can turn over in bed again. My balance has improved and I am more upright. No more incontinence or UTI’s. The brain fog is gone. My ability to smell is improving. My toes don’t cramp and curl under anymore. It is a treatment and not a cure. It is a lifelong treatment with no indication of ever having to increase the dose. Any excess your body doesn’t use is eliminated in your urine. There is just no standard dose. Every Parkinson’s patient is different. It can take two to three months to find your ideal dose. If she is sensitive to medication she may require a smaller starting dose. It is a very inexpensive over the counter vitamin. I’ve only found it online in the United States. It is b1 Thiamine hcl. There are various b1 Thiamine on the market. The one you want is b1 Thiamine as hcl. The hcl and sometimes hci are what you want. No other thiamine works.

Good luck,

Margie

richardo123 profile image
richardo123

Hi - I only get to go every 3-4 days. Last trip on toilet for 2 hrs. My wife gave me a product called dulcolax which helped soften stool. I only used it last weekend so I am not sure if this a fix for me or not. My wife went out to get me products with fibre but not seeing much difference Tarkington that either. It’s the medication . A set Back with pd.

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