At the end of the month I'll be at Sonimodul for FUS evaluation

[ion_ion]

I make a list of questions for the after-evaluation meeting. Feel free to write down here your questions so I can add them to my list.

Thank you.

[jimcaster]

Congratulations! One question I have is whether you will be ineligible for stem cell trials (or actual stem cell therapy once it's approved) after undergoing PTT.

[MBAnderson in reply to jimcaster]

My uninformed guess would be he would be ineligible for trials, but a commercial clinic might take him.

[jimcaster in reply to MBAnderson]

That's my guess, as well.

[Javalove in reply to MBAnderson]

I sort of fell upon this group this morning and so glad I did! How do I keep this information for next week? I’m not up on Zoom stuff.

[ion_ion in reply to jimcaster]

I added it on the list.

[Bolt_Upright]

Congratulations. You should join some of Marc's Zoom calls. We have 3 FUS veterans on the call most Sunday's.

[Marcia123 in reply to Bolt_Upright]

What are the zoom calls? Can anyone join? I am looking for a Parkinson Support group

[Bolt_Upright in reply to Marcia123]

MBAnderson hosts the calls.

us02web.zoom.us/j/833522248...

Saturdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Bolt_Upright in reply to Marcia123]

Yes! You can join. It is fun.

[Grumpy77]

Post your list so duplicates can be avoided

[Grumpy77]

The question i will like to ask is, does FUS PTT actually stop PD, slow progression or is it just a powerful symptomatic treatment?

Also I read in your profile that you have avoided PD meds. So does this decision of yours still qualify you for FUS, because from what I have heard you have to be unresponsive to PD meds to qualify for the treatment. You can't prove you're unresponsive to PD meds if avoided them

[MBAnderson in reply to Grumpy77]

You can show you are unresponsive to meds by taking one during the evaluation.

What they may do then is give you 2 or 3, which would likely cause a response.

PTT doesn't stop the progression, but it may stop the progression of many symptoms.

[Grumpy77 in reply to MBAnderson]

Thanks for clarification

[Grumpy77 in reply to MBAnderson]

Hi Marc, i forgot to ask about fatigue which is one of the major symptoms i suffer from. Did you suffer from fatigue before your surgery? If so did it improve after surgery and by what extent?Thx

[MBAnderson in reply to Grumpy77]

Fatigue hasn't been an issue for me before or after.

[Grumpy77 in reply to MBAnderson]

Thanks

[ion_ion in reply to Grumpy77]

I have it on the list but it is okay if you mentioned, too. I did not update the profile but I'm taking C/L for the tremor (5 pills a day) but is helping maybe only 10%; if I'm fully relaxed the tremor is barely noticeable , if I'm stressed the tremor is amplified, and this no matter if I took C/L or not; I noticed the C/L makes me sleepy and if I wake during the night I take the 6th pill.

[Grumpy77 in reply to ion_ion]

Thank you so much

[MBAnderson]

Got my fingers and toes crossed for you.

[ion_ion in reply to MBAnderson]

Thanks Marc!

[Kia17]

Many congratulations. Hoping everything will go well with your evaluation appointment.

[ion_ion in reply to Kia17]

Thanks Kia!

[ion_ion]

I read few times the articles posted on the Sonimodule site and that helped me to compose few interesting questions. When I'll be back I'll make a nice presentation. In dr. Jeanmonod article there is a basic question: which was first, the chicken or the egg!? As the brain is like an automated system dr. J considers the PD symptoms are produced by the improper electrical signals between the thalamus and a certain area of the cortex (similar to epilepsy); depending of the cortex area it could be a different neurological disease; the death of neurons seems to be a consequence of misfiring and not vice-versa. By fixing the misfiring the symptoms are resolved; the dopamine is the happiness substance so it should cut down the stress and reduce the misfiring (this is what C/L does); if stress produced PD is caused by the death of the dopamine neurons than why they die only on one side first? As f or misfiring that's normal that in a system a certain feedback loop circuit can get out of normal and FUS is just interrupting that overexcited or over inhibited helping the system to get stable.

I'm electrical engineer and I'm making an analogy between a servo system (or multiple servo-systems used by the robots) and the human body which is a complex machine; when the feedback loop of a servo-motor gives a positive feedback the loop is overexcited and the servo motor is "shaking" like our limbs; if the feedback loop gives a too negative signal then the motor freezes like the bodies of the people with no tremor PD; in order to make the system to stabilize and work smooth the servo system is auto-tuned , which means the correct parameters are determined to avoid the two extremes, overexciting or over-inhibition.

After FUS dr. J states that an autotune process starts in our brain to stabilize the all system and establish a different loop; he clearly states that the psychological factor is very important for autotune and that's why he makes sure the patients are mentally healthy.

This was my interpretation of his article by comparing with an servo system. The EEG is used to determine the abnormalities of the electrical signals in the brain. For example, is the epilepsy produced by the death of certain neurons or by degeneration of some electrical signals!? As far as I know is the latter.

In this situation I may conclude the FUS will suppress the symptoms for ever. What means stopping the progression? Suppressing the symptoms or stopping the death of the dopamine neurons? I incline toward the first.

[Grumpy77 in reply to ion_ion]

Thank you ion. Much of this is very technical which has been a good exercise for my brain. Your 3rd to the last paragraph puzzles me though

".... that's why he (dr J) makes sure the patients are mentally healthy."

With the many issues that come with PD like extreme stress and anxiety, brain fog and mental fatigue, with one side of your body speedily going down, with stiffness and rigidity... With all these going on with PwP how you be mentally healthy? (Well apart from those who are relatively newly diagnosed, which not stage that I think FUS treats anyway)

Secondly since you only mentioned epilepsy in the second to the last paragraph, it wasn't clear to me wether your speculative conclusion (if i can put it that way) was referring to epilepsy or PD

Thx

[ion_ion in reply to Grumpy77]

So it was my understanding the clinic also does a psychological evaluation of the patient to make sure his mental health is above certain limits. That is very important for the post-surgery recovery.

As for the epilepsy, yes, I tried to make an analogy with the PD. It is known the epilepsy is caused by some disturbances in the brain electrical signals in a certain area of the cortex and not by the death of some neurons. So PD can be caused by the electrical disturbance in a different area of the cortex similar to epilepsy instead the death of the dopamine neurons.

[Grumpy77 in reply to ion_ion]

I still have no clue what the clinic is on about or what they're evaluating. With medium or advanced stage PD, in my opinion, you can't be (psychologically) mentally healthy... but never mind

There are just too many issues going on. If they are talking of having a positive attitude, that I can understand. In my opinion that's not the right language for describing a positive attitude

[MBAnderson in reply to ion_ion]

You'll find Dr. Jeanmonod is very big on believing your attitude toward you health/PD has a concrete affect on your health/PD.

[healthabc]

I'll be in that town, Solothurn, July 5,6,7. I will be trying out the nearby Giger MD therapy. If you're there at that time, maybe meet for a coffee LOL

[MBAnderson in reply to healthabc]

How much $$?

[healthabc in reply to MBAnderson]

Giger MD- 1st visit is free, and each subsequent visit is 90 SFR. They recommend 3 consecutive days. Should be interesting.

[MBAnderson in reply to healthabc]

How long will benefits last?

[healthabc in reply to MBAnderson]

no idea, will find out.

[MBAnderson in reply to healthabc]

Might something like this produce the same benefit?

sunnyhealthfitness.com/prod...

[healthabc in reply to MBAnderson]

there's alot more to it than how it appears. Regardless, I will certainly find out- and will enjoy satisfying my curiosity will report back afterwards. (I am there anyway, visiting relatives.)

[ion_ion in reply to healthabc]

Sorry, on June 29 I'll fly to other European country and then back to USA. We'll try another time even I don't drink coffee but I can pick a Swiss bear.

😀

[MBAnderson in reply to ion_ion]

It might be less dangerous with Swiss beer.🙂