Hi! Nilo:
I have been on it for about 7 weeks now. However, I have not been very
regular in taking the medication due to my unusual travel schedule during
the past month. Often I could manage to take only one dose per day.
Expecting my second shipment soon.
I have been having my PD and ET symptoms for at least forty years now.
So I do not expect miracles overnight. However, I do see some improvements
as follows:
1. I have more energy to do my daily chores. Before I started on this
medication, I would have lots of pain working on the computer, I need to do
at least 4-6 h of surfing due to the nature of my profession. At one time,
I was going to completely give up my computer work for this reason. Now a
days, I am doing my regular quotta of several hours in computer, with only
minor problems. I have started using the mouse with my right hand for the
pastten days, which was not possible before. I was a facultative lefty for
some time.
2. I feel there is minor improvements in my postural instability. It
will take some more time to comfirm this effect.
3. I use to have swallowing problems at least two or three times a week.
Since I started my medication, my traffic problems during swallowing has
been almost reduced to nil.
4. I feel my drooling has been very much reduced. I use to wake up due
to wetness in my face several times in the night. This has been reduced to
once or twice a day now a days.
5. My friends tell me that I look much better and much more healthier of
late.
6. I sleep very well.
7. I see a definite improvement in dystonia. No more crampings in my
toes or toe curling with pain any more.
But, I do not find improvements in the following aspects:
1. My ET is still going strong.
2. My speech problems still remain as it used to be. Voice is still
very low.
3. I would like to see much better improvement in my postural
instability.
4. On bad days, I still get pain and stiffness in my calf muscles.
These improvements could be wishful thinking or a placebo effect.
Whatever you may call it, as long as I find some improvement, I shall
continue to take my medication. My body also has a habbit of responding
very well to drugs. I still take my daily dose of phosphatidylserine, CoE
Q10, glutathione, B12, folic acid, multivitamins, Vit E, Cal-Mag, Synthroid,
Selinium etc. This combination of medication has me feeing like how I felt
about two years ago, when I was first diagnosed.
I have my sinemet and mirapex ready. But, I hope I shall never have to
take them. I would like to hear from Ervin about his experience.
Wish you all the best.
Raj
----- Original Message -----
From: "NILO A SARMIENTO" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, January 11, 2003 12:55 AM
Subject: I've just received...
> hi, raj,
> just received my meds from dr. paneri....before I get into the regimen,
> i've questions i need answers from him..
> how are you after four or five weeks...and how's ervine...
> nilo
>
> On Sun, 29 Dec 2002 14:02:02 -0400 Brightline
> <[log in to unmask]> writes:
> > Dear All:
> > I have to take my hats off to David Moreland for his open
> > minded
> > attitude. In my understanding, that is all Dr. Paneri wants from
> > us.
> > Otherwise, Dr. Paneri would not have offered to treat Tom Bernadine
> > with out
> > charge. However, Tom did not want to take that route and that is
> > his
> > prerogative. Just ask yourself. Would you offer to treat somebody
> > without
> > charge if you did not believe in your own medication? It costs Rs.
> > 500
> > (roughly about US$ 11) for him to mail the stuff from India to
> > North
> > America. I am sure that Dr. Paneri is aware that if Tom did not
> > find it
> > helpful, he is not going to go anywhere with this.
> > A few of us are trying it out and I think it is our prerogative.
> > As I
> > told you before, I thought it was worth giving a shot. I did not say
> > I
> > believe in it hundred percent. And even if it gives some temporary
> > symptomatic relief our money would not have been wasted. If it
> > does not do
> > any good, we shall wash our hands and let you all know it does not
> > work.
> > That is all there is to it. Nobody has to "eat crow" no matter
> > what
> > happens. If it reall works wonders, as claimed by his patients,
> > what do we
> > have to complain about? Please hold on to your horses. Let us wait
> > and
> > see.
> > What we do not realize is that the whole field of treating PD is
> > still
> > up in the air. Even diagnosis of PD is onlt 75% accurate since it
> > is mainly
> > done by physical examination by the experts. I read a review of
> > the
> > diagnostic features of PD after somebody interviewed 300 Movement
> > Disorder
> > Specialists and each one had different criteria for the conclusions
> > they
> > have reached! In my own cae, so far I have seen 6 MDSs and every
> > one of
> > them gave me different verdicts! Some say it is ET and not PD,
> > while others
> > say it is both PD and ET! One said that I may have some symptoms
> > of PD
> > but I wasn't ready for any treament yet! How do you explain then
> > the
> > presence of postural instability, drooling, cramps in my calf
> > muscles,
> > difficulty in getting out of my car etc? (Did you know that nobody
> > knows if
> > when people with ET symptoms develop PD symptoms, is it one or two
> > different
> > diseases? Unlike ET, PD was not thought to be an inherited disease,
> > which
> > mayh not be necessarily true; there are more genetic defects in PD
> > patients
> > than in ET patients. In fact, both may be equally familial and a
> > certain %
> > of them may not be familial.)
> > It appears that everything goes in this field. Think of so many
> > drugs
> > for PD and nothing is working for everybody. This is because I am
> > told PD
> > is a 'designer disease". The same thing appears to be true for DBS,
> > the
> > most advanced treatment for PD. Even after DBS, people are still
> > taking
> > Sinemet and some others are still experiencing diskenesia. Is there
> > any
> > course of action one can take, where one is sure of alleviating all
> > the
> > symptoms, leave alone cure?
> > Somebody told that we are desparate to take this direction. Is
> > there
> > any one of us not desparate about what is waiting in store for us?
> > I am in full agreement with you when you say that we should all
> > act-up
> > now and get politically involved in supporting the cause of stem
> > cell
> > studies. But, if you are waiting for the stem cell cure to come
> > along and
> > save all of us from misery, think again. First you have to change
> > the
> > minds of the politicians or change the government. Then the stem
> > cell
> > research have to be funded and then they have to find the cure after
> > a lot
> > of trials. This would take a minimum of 10 years if not more.
> > Personally I
> > feel this would be too late for most of us. That is another reason,
> > why we
> > should hurry up and change the minds of the ignorant or irrational
> > politicians. The only way is educating them as well as the general
> > public
> > and also letting the know of our sufferings and how we are wasting
> > our life
> > because of this ailment.
> > This is no time to fight amongst ourselves and blame each other
> > for any
> > reason at all. I request that people be open minded, be
> > constructive (even
> > if you do not agree), and not be abusive. I do not think this is
> > the
> > purpose of this forum.
> > Thank you for your time.
> > Raj
> > [log in to unmask]
> > *************
> >
> >
> > ----- Original Message -----
> > From: "David Moreland" <[log in to unmask]>
> > To: <[log in to unmask]>
> > Sent: Sunday, December 29, 2002 10:41 AM
> > Subject: Re: Dr. Paneri
> >
> >
> > > Rick,
> > > I guess we can agree to disagree. I don't know if dr Paneri's brew
> > of
> > herbs
> > > and spices will effectively treat PD but it seems like we could
> > be
> > > supportive of Raj, Evan and Nilo as they have opted to try it. And
> > it
> > > appears to be the only game in town. I am sure that they will give
> > us
> > > progress reports as time goes on and we will learn how effective
> > it is.
> > >
> >
> > ----------------------------------------------------------------------
> > To sign-off Parkinsn send a message to:
> > mailto:[log in to unmask]
> > In the body of the message put: signoff parkinsn
> >
> >
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
