New to the forum

[thfc1961]

My wife suffers from PD. Interested in any ways of alleviateing dyskinesia via. Medication or DBS

[Gioc]

What type of dyskinesia? what medications do you take? A little information helps.

[thfc1961 in reply to Gioc]

It’s my wife that is the sufferer. She is on Sinemet, ropinerole and razagaline. The medication is losing its effectiveness and she is experiencing restless leg syndrome and dyskinesia (involuntary movement). She was diagnosed 10 years ago. We have an appointment with her Parkinsons nurse who over the years has “tweaked” her medication dosage but we are worried and frightened that she might have reached the stage where she has to choose between Bradykesia and Dyskinesia. We are also interested in people’s experiences of DBS if her condition worsens further.

[Gioc in reply to thfc1961]

Have she ever taken vitamins, type b1 or group b in general?

[thfc1961 in reply to Gioc]

No she hasn’t, will her nurse be able to advise as to which ones to use

[Gioc in reply to thfc1961]

Sure!

healthunlocked.com/search/p...

[park_bear in reply to thfc1961]

Reference for the high-dose vitamin B-1 protocol:

highdosethiamine.org/

High-dose vitamin B-1 has helped many here.

Generally speaking, most healthcare providers are not knowledgeable regarding this protocol.

[Markbit]

MRIgFUS in Switzerland solved both for me.

[Hikoi in reply to Markbit]

And it cost Markbit?

Dont forget apomorph can work well too thtc.

[Markbit in reply to Hikoi]

About 40.000 usd (35.000 chf)

[lenamm in reply to Markbit]

Agree with Mark bit. I have zero dyskinesia and no and offs anymore. My bradykinesis is 80% less. A trial is starting for PTT by FUS in the US in April (the surgery we both had).

[Despe in reply to lenamm]

Good news!

[Tex1 in reply to lenamm]

My father is being considered for DBS, after reading your experience I would like him to see if he qualifies for the PTT, thoughts on experience/ability for the trial affecting outcome over the team in Switzerland?

[lenamm in reply to Tex1]

Team in Switzerland is always going to be better than someone with no experience. Plus they are awesome!

[Tex1 in reply to lenamm]

Thank you! Do you know time frame now, I see that you had your second side done not that long ago, thought you might know. He is 81, do you think age would disqualify him? We just came from his neurologist and she ok'd him for dbs but now we have this info...If I start checking into it do I just contact the clinic in Switzerland?

[lenamm in reply to Tex1]

I got in on a cancellation for side two. Someone in our facebook group get scheduled for July. Yes contact the clinic.

[Tex1 in reply to lenamm]

Thank you! I sent them an email.

[Trixiedee in reply to Markbit]

I had FUS in Switzerland and My dyskinesia is totally gone.

[thfc1961 in reply to Trixiedee]

Excuse my ignorance but what is FUS?

[Trixiedee in reply to thfc1961]

Focused ultrasound. Look up my old posts on here or Lenamm or Markbit.

[tjsmith52 in reply to Trixiedee]

Hi...what kind of dyskinesia did you have again?

[Trixiedee in reply to tjsmith52]

Levodopa induced dyskinesia. Are there other types with Parkinson’s?

[tjsmith52 in reply to Trixiedee]

Sorry... I meant peak dose versus wearing off/diphasic

[lenamm in reply to tjsmith52]

It treats both - I had horrible biphasic and peak - now 100% gone

[Trixiedee in reply to tjsmith52]

I had dyskinesia the whole time my meds were working. So I was either dyskinetic or virtually paralysed. I never had a tremor.

[CaseyInsights]

In reference to Hikoi post - Apomorphine

patient.info/medicine/apomo...

[chartist]

If you end up considering Dr. Costantini's high dose thiamine/vitamin B1 protocol, here is a link to all of the information which Dr. C left with the forum while he was able :

healthunlocked.com/parkinso...

Quite a few members on this forum use B1 and have reported good results. Good luck!

Art

[Gailsnail]

After having Parkinson’s for 10 years, I had DBS surgery and it stopped the dyskinesia. There are other benefits too.

[thfc1961 in reply to Gailsnail]

Can you explain the other benefits please

[Gailsnail in reply to thfc1961]

I do not have tremors any more and I don’t experience “freezing” either. I take much less medication. DBS surgery was great for me.

[Tex1 in reply to Gailsnail]

Thank you for your experience, do you recommend a doc for it? My dad is being recommended for DBS but we would like to find a capable surgeon.

[Gailsnail in reply to Tex1]

Dr. Andreas Lozano at Western Hospital in Toronto, Ontario.

[Tex1 in reply to Gailsnail]

Thank you!

[Hidden]

Is she sleeping ok or somewhat fitfully?

[thfc1961]

Sleeping is ok at present. Seeing her PD nurse Thursday to see id we can “tweak” the timing and dosage of ther medication

[JohnPepper]

Hi thfc. I have been able to overcome most of my Pd symptoms. I have been Pd-Medication-free since 2002 I took Pd medication for 10 years. It is too much to tell you on this website, If you email me at [e-mail] I well send you everything including videos at no cost. It is the only way I am aware of to reverse Parkinson's symptoms.