New and current hope for Parkinson's Disease

[Furch]

Sorry, we didn't find She at first was told she had PD and we went through all the usual emotional grief associated. Then she was told not PD but a "Pitched nerve" and was given a block. Then she continued having dystonia to left leg. Was told to follow up with a movement specialist for possible botox injections. Immediately he told us that her problem was PD by his assessment was placed on CL and some neuro-patch which made her zombie like in her appearance and behavior. Then had a DAT scan which confirm a problem in the dopamine production. Have tried various RX, Physical therapy/ Physican., working with CBD oil and some multiple Probiotic to try PS128. I stay up at night once she gets settled and research. .I have requested every hospital and main research centers including hanging around the local cafe at a major Murdock Research center just to bend an ear with some of these amazing, dedicated researchers. But none are into the PD. It seems that most of the real successful trials are either very limited or over in other countries. I am particularly interested in, the Neuro-modulation theory, aka Peter Tass glove, or the CUE1 ,the Probiotic PS128,(gut/brain) Fecal transplant, Focused Ultrasound The bio-light from UK, Vit B1. As a RN of 40+years who took care on so many people I can't give up on the person who means the most to me. But her being a teacher, and I a nurse our desire to work in a public service career did not make us wealthy enough for world travel. So this is where we are in this journey. Tx with CL, Rytary and more Off periods than controlled times. Tried Kynobi and was wishing and praying for some positive results but was a disaster and I am not saying anything wrong with the drug or the clinician, it was just not good for us. So here I am at 0500 as usual researching and learning all I can about this horrible condition

[Farooqji]

stem cell trials are the only hope right now

[Furch in reply to Farooqji]

We are not real aggressive here in the US with stem cell research. But thanks for the reply and I really appreciate you sharing about the positive news of Stem Cells.

[park_bear]

It is important to modify interventions, prescription or non-prescription, one at a time to understand the impact. For prescription meds a week or 2 is usually sufficient. For nonprescription disease modifying interventions it can take months - 4 months for B1, 2 months for cinnamon to reach full effect. It is hard to have patience when the patient is suffering. Therefore get the prescription meds right first, then explore the nonprescription interventions.

Regarding the prescription meds, what exactly is her regimen and what are symptoms during the off periods?

[Furch in reply to park_bear]



thanks for the reply

carvo/levodopa;

she takes: 3 pills of 25/100 @0800, then takes 2 pills at 1200, then another 2 pills @1600, then 2 pills @ 2000. Then at bedtime she takes 1 Rytary of 61/235. Throughout the the day she will take an extra .

total dose carvo/ levodopa 25/100 is 9pills/day and the rytary at nightm

off periods : she complains face feels numb, then freezing of gait and eyes close, speech weakens, less commutative and very agitated.

[jimcaster in reply to Furch]

I was also diagnosed in 2018. I take 1 carbidopa levodopa 25/100 at 8:00 a.m., 1 at noon, 1 at 4:00 p.m., and 1 at 8:00 p.m. (4 total per day). Your wife's dose seems really high to me, but we are all different.

[park_bear in reply to Furch]

Thanks for that detail. To reduce off times you could talk to your prescriber about adding one of these medications: rasagilene, selegline or entacapone.

By way of nonprescription interventions, it would not do any harm to try PS128, but it did not do anything for me. I would suggest high-dose thiamine. Dosing instructions and other information at the links. Many here have benefited from this treatment. Allow four months for full effect:

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

facebook.com/groups/parkins...

A good source of thiamine HCl:

vitacost.com/vitacost-vitam...

[Boscoejean]

was the diagnosis very recent? Do you live anywhere near Texas?

[Furch in reply to Boscoejean]

since 2018 bit it was very incompetent diagnosis first she was told she had PD, then was told a pitch nerve and tx with a nerve block afterward developed dystonia to left foot sent a mobility specialist for botox consideratio at which time he looked at her did a brief exam and asked if she was aware she had PD. At which time all the dealing of grief once again we hsd dealt with and was finally feeling more positive. It was like the piano was returning from. Above towards us again.

thanks for the reply

[Boscoejean in reply to Furch]

if the original diagnosis was 2 years ago then the stem cell clinical trial at Hope Biosciences in Sugarland. Texas would accept the person however it does involve several trips to Texas.

clinicaltrials.gov/ct2/show...

[CRMACK1948]

Have a look at PEA supplement reviews and info.on Google.It’s working for my husband after one month taking high doses.

[Musicallmylife in reply to CRMACK1948]

how did you hear about PEA and how does it help your husband. Also what is a high dose? Thank you.

[CRMACK1948 in reply to Musicallmylife]

so sorry not to have replied sooner,my apologies.I first read about PEA while doing on line research about Parkinson’s.If you google,( remembering its capital letters) there are quite a few sites that are scientific papers dealing with its positive effects on a host of brain related problems.The start dose recommended is1200 mg per day for 3 months,going down to 600 mg after that.My husbands speech has improved,and he is much more upright.Also his writing is much better.Small things in a way,but it shows me that PEA can have a positive effect,Last June,after covid,he couldn’t walk,now he is out mowing the lawn .I wrote about suppliers in a post to another member which You can find on this website,

[JCRO in reply to Musicallmylife]

I’ve posted this PEA research link a few times since its publication some 11 months ago. Hope it helps:

mdpi-res.com/d_attachment/b...

I take umPEA 600 mg of a day (brand: Normast). I started on double that for maybe 60 days. Don’t ask if it helps as I really don’t know given my ridiculous stack of 20+ meds and supplements per day. That said the research is positive and seems safe enough although one HU member reported a solitary AE/adverse event. Please continue to read far and wide though as there may be concerns about PEA or drug or supplement interactions that have yet to surface.

[Godiv]

Hi Furch

I’m so sorry your beloved is going through this. Good for you for not giving up.

I was also struck by what other folks had noticed. I’m in my fourth or fifth year and she’s taking almost as much rytary and C/L as I do. But then again I guess it’s good to keep her moving I hear you about lots off times too. And it’s strange because I feel like the more I take the longer and more dramatic the off times are. The doctor says that due to disease progression which is not something anybody wants to hear.

I had not met anyone who’s tried Kynobi . I’m sure it works for some but wow. It was an unpleasant experience. I didn’t even want to try it the second time as they offered.

If there’s any way she can move and exercise that supposed to be very helpful. The experts know better but I think it slows progression. But it’s very difficult to do when you can’t move or your balance is bad etc. Have you looked at the Theracycle by any chance? It’s forced exercise so you get exercise even if you can’t. It’s expensive though. I keep an eye out for used ones and you might have a local physical therapy office that has one. I know that’s not the greatest answer but it’s a thought.

I’m taking PS 128. I just basically restarted it. I would take a very consistent because it is expensive. They have a new formulation, And the company is running under a different name but I’m sure the old info will pull that up. But let me know if not and I’ll find it for you.

Oh the note about exercise — It can make you feel really drained during or afterword. My doctor lets me take an extra C/L. So that shows you it can be a little difficult. But the extra med is worth it to be able to exercise.

The forum is wonderful and it is chock-full of helpful and knowledgeable people.

I’ve learned so much from them and they’re always so kind about sharing information. So there’s that :-).

[Tucker_AA]

My husband was diagnosed with PD in 2016, he tried to take CL several times and did not work from him. He had also tried several medications with no luck.

Lately there have been several articles talking about SIBO and how affects PD. For the last month we have tried SIBO Yogurt made accordingly Super Gut book byWilliam Davis, MD.

With this I have seem some improvement in posture, mood, sleep and skin.

He is also taking PS128 but it is expensive. I have been trying to produce yogurt with PS128 no luck so far, but I will try a different way this week and report.

I also make sauerkraut with PS128 to reproduce the bacteria and increase the amount he takes without expending more.