Hello,

Back from two days in hospital for neurological and stress evaluation .

I could not stop myself to talk about the banding/wrapping effects Rick has given the name of FREE to, as far as I had to wrap my right arm and right leg to be able to walk into the "movement disorders unit".

Serious consideration by neurologists has been given to my reports and to the 4 videos


THE UPDRS ASSERTS:
Reality of the « FREE » (= wrapping/banding effects) has indeed been conclusively demonstrated and recognized in my personal case, as has their durability

[Nota bene : these last words are underlined so that
1/ no one may understand, think, say or write that this professoral recognition of my very personal case is a general case recognition
2/ no one may use it as a caution for further interpretations and writings,
3/ no one may be influenced in personal trials
4/ no one may wrongly interpretated and attempt to my world famous neurologist's reputation .]

In front of all foreign medical visitors and young doctors specialized in neurology (about 15 persons in my room) following the "boss' tour", professoral recognition has been given to the reality of the "banding effect" in my personal case .
More, objective measurements have been recorded with an evident and important amelioration of my OFFUPDRS evaluation when « with bandages ».

My UPDRS in ON state is of 6, which reflects a high quality of motor response to l-dopa.
Such a good ON state may initially give wrong impression about my PD case severity .
Most people would think I exaggerate when complaining about PD when they see me walk, work and go around in such an appearent good form.

But OFFstate are severe ones, bringing deep disability, as demonstrated below.
For these past two years, I have been able to avoid on/off heavy fluctuations thanks to an optimization program my working group has elaborated. But stressful conditions have progressively impaired length of my ON times and increased my OFF state frequency and duration.



My UPDRS in OFFstate.

Waowwwwww, neurologists gave all conditions on purpose for a really « severe off » test (3 hours delay for tablets intake) .
More, during the first hour and an half, I had the opportunity to discuss about neurophysiology with my neurologist and with members of his team.
This conversation required a maximum concentration from me, which was harder and harder to sustain as off became deeper.
I went back to my room and had to lay down, feeling in a really bad condition. Then I had to wait for an extra 90 minutes delay before a neurologist came to score my OFF UPDRS. I thought they had forgotten poor old me…really hard time…

1.UPDRS in severe OFF state= 40

I felt like « in a thick fog », with a certain and glaucous bradypsychia, an extreme difficulty to concentrate, with slowness of my understanding, thinking and with a real disability for synthesis and cognitive projections . I just wanted to send everyone to hell and « get my dose of levo-dopa ».
Hush !! I did hate this state and my evident dependance to the « gold standard molecule »…’have to get rid of it as quick as possible….

2.UPDRS in "severe off with bandages"= 12

A very kind young doctor put the bandages on me, following my instructions, as I was in too deep akinesia to wrap them on my own .
The effect was "The waking of the Sleeping Beauty"..............
UPDRS was estimated to be about 12 (the test has not been completely re-done from A to Z on all parameters because UPDRS takes about 20 to 25 minutes to be correctly estimated) but

- Very important motor effect (motor disability evaluation went from 4 to 1 on the right, 4 to 0 on the left left, both legs from 4 to 0), instead of impossible gait, I could walk on toes or toes up)
- Evident and witnessed improvement of my speech fluency, same with my voice (louder and much more modulated) and of my face's movements
- Evident improvement in calculating, in reactions to contradiction
- Better and quicker understanding and reaction to an absurd text, less "mist"
- Cogwheeling nearly total disapparition (the test has been done in a "deep off" and the bands are even more efficient if placed before the "off" or when OFFstarts)
- No fall when pulled backwards (balance test)


Neurologists that took care of me noticed the effects were particularly important and remarkable in my personal case. They demonstrated their knowledge of these phenomenons and reported their personal observations, physiotherapists ones and stories & tricks learnt from their patients, all of them being related to positive retroaction of deep sensitivity (proprioception) on muscular tonus and, from there, on motricity.

However, the long duration of positive effects (as far as mine were concerned, at least) under banding conditions has not been commented.

Neurologists I met did not give me the feeling they give real importance or interest about all this.
They talked about it as a simple "trick that a sick person may use to improve personal ON state but not to get rid of illness", which is absolutely true.
But they underlined that " L-Dopa doesn't either cure PD"...which is very true too.
Still, they did not say if L-Dopa was a trick too….


THE FCC CONFIRMS:

To be signaled a very unvoluntary but "splendid" personal demonstration, yesterday morning, which astonished two nurses and a young neurologist..
I have had a bad night and poorly slept. woken up at 5 a.m.
I have swallowed my first dosis of L-dopa entacapone and gone outside to walk a little bit and smoke a cigarette.
As usual, this first cigarette "cut my legs" but since I had a lot more to walk than when I'm home, I have reached complete freezing at the entrance of the unit's corridor.
" Would you like some help? Would you like us to get your bandages?" the nurses asked.

"No », I replied, « if you have any, may I try support hose (stockings)? »

No problem, they had some and gave me a pair of them. I had big troubles to put them on, because my hands were very stiff, too.
But, when support hose were on, the effects on legs were so important ones that, within a second, they could move normally, and even my arms (not banded) immediately relaxed and moved again. Good form came back immediately, impression of exhaustion fade away.

At this very moment, right leg could be lifted up in a very successful manner.
I can’t tell you why it made me think of one of my grandmother, probably because she was an excellent dancer , slightly extraverted and fullfilled with « joy of living », but, suddenly, the same "joy of living" overwhelmed me and, in memory of hers, I started a French Can-Can......of anthology for someone hospitalized in an "movement disorders unit".

A young neurologist arrived in my back and experienced some trouble in swallowing his morning coffee..... FCC is not that much frequent among hospitalized PD patients.

As a good physician, he examinated me again, with and then without support hose and gave again confirmation of the huge clinical improvement with the stockings.
He probably reported the whole scenery to his "boss" because, in the middle of the morning, my neurologist and an other professor of neurology came in my room and teased me with a sweet smile : "We've heard that the bandage has worked extremely well this morning! Go ahead ! You are allowed to go home but, prior to any change in your treatments, try to change your schedule and organization of everyday life, OK with this?"

Anne