Thanks for your comments John.
I understand your point but we did in fact previously explore the possibility of stroke.
In my father's case the differential diagnosis was vascular stroke (not as a result of head trauma), but the imaging did not really support it.
For the record, I am not suggesting that my father has idiopathic PD, because this is clearly not the case. However he very likely could have a condition sometimes referred to as post-traumatic parkinonism, which is part of a cluster of consitions sometimes referred to as Parkinsons Plus, Atypical Parkinsons, or Parkinsons Syndrome or simply Parkinsonism.
These typically do not respond to levodopa. The reasoning behind this is that whereas idiopathic PD spares the dopa receptors, Atypical PD conditions do not spare the dopa receptors.
In any case I will run through differential diagnosis again when we see the new neurologist in 2 weeks time, and see what he has to say.
Out of interest, we still have some recently purchased Sinimet tabs, and I gave my father one pill two days ago. For about 24 hours there was zero response. But the last two days, my father has been much much better, so much so that he has had no NO freezing, no tremors in his hand, and he has been able to get up off the couch by himself.
Now, I would love this to be a sign of responsiveness to levodopa, but like you all know this condition is well known for good days and bad days, and in all likelihood this is just 2 good days. Anyway, I just thought I would mention it.
My focus however is to try anything that may help. Chances are nothing will help, but I need to try for my own peace of mind.
And speaking of that, I just bought my father a whole body vibration unit. Should be received within a matter of days. There was been some positive studies on HBV and Parkinsons, so I thought it is worth a try. I will keep everyone posted if I notice anything that may indicate some response.
Robert
-----Original Message-----
From: john thomas <[log in to unmask]>
To: [log in to unmask]
Sent: Sat, Nov 28, 2009 4:41 am
Subject: Re: Treatments for atypical Parkinsons
Robert,
I know this difficult to take or even understand, but I would
suggest your father is suffering from a stroke is far more likely than Pd.
Again whilst not meaning to be overly critical of the medical fraternity (
i.e. more often wrong than right ) neurological disorders are so varied with
their symptoms that it can be extremely frustrating when one is confronted
with a loved one's predicament. However sinemet reaction is the classic
response indicator for all idiopathic PD categories. Those cases that get no
response, are thus more likely, to be suffering from another cause. The fact
that your father has no response to sinemet means that he isn't idiopathic
PD. The fact that your father suffered a head injury would suggest a stroke
related cause for symptoms either lipoid or blood clot in cause.
I would urge you to seek the advice of a brain trauma medico before trying
self diagnosis.
Hope this helps .
John Thomas
-----Original Message-----
From: Parkinson's Information Exchange Network
[mailto:[log in to unmask]] On Behalf Of Robert Ravel
Sent: Friday, November 27, 2009 12:48 AM
To: [log in to unmask]
Subject: Treatments for atypical Parkinsons
Hi,
My name is Robert from Australia.
My father received significant head injuries in a road accident in 2002.
After rehabilitation he managed to slowly recover for a few years, but the
last
5 years he has developed all the cardinal symptoms of Parkinsons disease,
and
over
the last 6 months in particular these symptoms have progressed to such a
stage
that my father's quality of life has seriously diminished.
In 2005 we tried Sinimet but there was zero response.
It seems, like most cases of atypical Parkinsons, that the dopa receptors
were
not spared.
I am desperately looking for treatments that may atleast modestly relive
some of
my fathers symptoms. Even a 10% would make a huge difference for us.
(1) In one weeks time we will see our doctor for botox injections. At this
stage
I suspect that the injections will be in the calf muscles, but if anyone can
suggest sites of injection to assist with dystonia, I would really
appreciate
it.
(2) A week later we will be seeing a neurologist for trial of
pharmacological
medications to hopefully assist. I know most neurologist would not even
bother,
given the low response rate for atypical Parkinsons, but I have my fingers
crossed.
I have read of some success with atypical parkins and the Dopamine receptor
agonist called bromocriptine, and am hopeful that my father can trial this.
I have also read about the transdermal administration of rotigotine, and
would
be asking about this too.
I am however looking for any other pharmacological suggestions for atypical
parkinsons, with some science behind them, to suggest to the neurologist as
a
trial.
Can anyone help me?
Thanks
Robert
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