neurological examination: Had a checkup by... - Cure Parkinson's

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neurological examination

Lucal profile image
51 Replies

Had a checkup by my neurologist, he found that since September of last year there have been no deteriorations. he advised me not to resume pramipexole and continue doing what I am doing. Both exercise and B1. For the next appointment he said see you again in a year. useless before.his exact words were, in 35 years of parkinsons diagnosis, if I had it I would choose your version ...

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Lucal
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51 Replies
ddmagee1 profile image
ddmagee1

Good news! How I wish exercise and B1 would do that for me!

Gioc profile image
Gioc in reply toddmagee1

Ddmagee I read your history of life, you have all my respect, friendship and admiration, Gio

I recently posted about my visit with my neurologist. The previous appointment I had him do a pull test. My wife took video. At that test I took two steps back. This time I took one step back. He must have been surprised because he repeated it twice. I posted each pull test in the group. My neurologist now expressed interest learning more about Thiamine hcl. Keep the faith and change your doctor's closed mind.

mannp profile image
mannp in reply to

That is really exciting news. Now to get more doctors onboard. Congratulations Roy

Cjbro2000 profile image
Cjbro2000 in reply to

@Lucal @RoyProp Good news! 👍 It’s hard to argue with success.

ladyaudree profile image
ladyaudree in reply to

God bless you Roy for your good work in spreading the word that there may be a way to get some help. No miracle (yet) for me on the B1 but I have benefited from information I found on the HCl Facebook page and this website.

jimcaster profile image
jimcaster

Congratulations! Keep doing what you are doing!

Fed1000 profile image
Fed1000

Very happy for you Lucal, all this is a great stimulus for us all.

Enidah profile image
Enidah

Bravo! That is very encouraging.

nellie58 profile image
nellie58

That is fabulous! Congratulations!

PEB69 profile image
PEB69

Congratulations Lucal. This is great news for you and your family!

Sudhap profile image
Sudhap

Well done

Gioc profile image
Gioc

I hope the dark days of PD are over for you as they are for me. I am happy for you. Gio

Despe profile image
Despe

Way to go, Lucal! :)

M1tz1 profile image
M1tz1

Wonderful news, Lucal. You're doing well. 🙂

Toogood profile image
Toogood

Great news for you...

Jennyjenny2 profile image
Jennyjenny2

We’re so happy for you! Congratulations! Very encouraging for us all too.

Berylhorsey1 profile image
Berylhorsey1

Uplifting. I am on simenet and ragasaline but the B1 has made the most difference. Long may that last. My neurologist says I am still in the honeymoon period and I have been diagnosed for 7 years.

mannp profile image
mannp in reply toBerylhorsey1

I’ve heard the honeymoon period for PD is 5 years.

MarionP profile image
MarionP in reply tomannp

Honeymoon? Can you say more on that please?

mannp profile image
mannp in reply toMarionP

The first five years are considered to be more mild. After the honeymoon period things can go downhill faster. We are proving that theory wrong with taking the b1 Thiamine hcl.

Berylhorsey1 profile image
Berylhorsey1 in reply toMarionP

It’s the period when your symptoms are controlled and not too bad

mgregor6 profile image
mgregor6 in reply toMarionP

Ya, who wants a honeymoon? I want a divorce court...

Berylhorsey1 profile image
Berylhorsey1 in reply tomannp

Then I am doing well. I am sure it’s the combination of the nhs meds and the B1

campos1004 profile image
campos1004

god bless you, i hope that my years of being healthy helps? still exercise every day try to eat well .

Springfield78 profile image
Springfield78

Wonderful news! Thanks for sharing!

ladyaudree profile image
ladyaudree

What wonderful news. What is your story? How long have you been on the B1?

DianeF profile image
DianeF in reply toladyaudree

Diagnosed 4 years ago at age 58 after a knee replacement. I believe the anesthesia and anti nausea meds exacerbated PD which may have showed up later. No symptoms prior to surgery, but definitely within days post surgery. Tremors stopped after I stopped post surgery meds but stiffness, lack of arm swing, exhaustion , eyesight issues , loss of ability to smell and right sided weakness didn’t leave. I started on Azilect for the first year, added Amadatine the six months later and C/D ER 25/100mg shortly there after. All were helpful but the Thiamine HCL has upped my energy level and cleared my fogginess as well as helped my movement .

Casey953 profile image
Casey953 in reply toDianeF

Has B1 also helped your eyesight issues?

DianeF profile image
DianeF in reply toCasey953

That’s one area that has not improved!

DianeF profile image
DianeF

I recently went to Mayo Clinic for a physical which included an appointment with a top neurologist. He specializes in Parkinson’s and is the author of several text books on it. He said, “If I didn’t know you were on medication, I wouldn’t know you had Parkinson’s. Your neurological exam is normal.” I fully credit Thiamine HCL and exercise. For the first time in the 4 years since diagnosis, I feel like my old self. I’ve been taking Thiamine since last fall.

MarionP profile image
MarionP in reply toDianeF

Any response from him about use of HDT?

DianeF profile image
DianeF in reply toMarionP

No, he just said the single best thing to do is keep moving and whatever else is helpful.

Goldencbc profile image
Goldencbc in reply toDianeF

Diane, can I ask for your dose of B1? Thanks, Carol

DianeF profile image
DianeF in reply toGoldencbc

About 3 grams

Gioc profile image
Gioc in reply toDianeF

I am happy for you Diane , Dr. C will be very happy to read it, Thanks

jimcaster profile image
jimcaster in reply toDianeF

Did you see Dr. J. Eric Ahlskog? That's who diagnosed me last May. I am still not on any medication and probably won't follow up with him or any other neurologist unless I feel the need for medication...or, better yet, when they find something which slows or stops the progression to a greater degree than what I'm already doing, which includes HDT and exercise as cornerstones. 😊

DianeF profile image
DianeF in reply tojimcaster

Yes, that was him.

MarionP profile image
MarionP in reply toDianeF

Can I ask whom did you see? (I get my neurology from a Mayo NP in that department)

jimcaster profile image
jimcaster in reply toMarionP

See above. J. Eric Ahlskog...

Kpapa profile image
Kpapa in reply toDianeF

How much vitamin B 1 do you take

DianeF profile image
DianeF in reply toKpapa

Around 3 grams once a day. I tried splitting the dose to twice a day but found if I took it later than breakfast time I had trouble sleeping.

ConnieD profile image
ConnieD in reply toDianeF

Hi Diane such good news! How much HDT are you on and may I ask what type of exercise you do? Thank you!!😊

DianeF profile image
DianeF in reply toConnieD

Around 3 g once daily. I fast walk for 1-2 miles at the gym, do a cardio machine for 20 min.,do some light weights and about 20 minutes of stretching. I was going 5 days a week for 2-3 hours but tore my hamstring about 1.5 years ago so I was out of commission for 9 months . I go to the gym 3-4 days a week now but am cautious. I also have 2 knee replacements and a 35+ year history of back issues so I’m selective in what I do.

ConnieD profile image
ConnieD in reply toDianeF

Thanks Diane!! Sounds like a very good workout routine!! Connie 😊

in reply toDianeF

Hi DianeF. How do you know that B1 is the reason and not fast walking, which is the protocol that John Pepper uses?

DianeF profile image
DianeF in reply to

Because I have been fast walking since diagnoses for 4 years (with some time off last year for a torn hamstring ).

kalyan48 profile image
kalyan48

congrats - by the way do you practice QIGONG -heard HOWARD SHIFFKE'S qigong protocol- recipe for recovery -is helping many - anybody has any idea

DianeF profile image
DianeF in reply tokalyan48

Not yet but it’s on my list. Thank you!

kalyan48 profile image
kalyan48 in reply toDianeF

great. pl let us know

Goldencbc profile image
Goldencbc

This is fantastic news. I am happy for you. It brings hope to all of us.

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