Re: help, uncontrollable off time

[Brian Collins <bjc@xxxxxxxxxxxxxxx>]

On Sun 29 Jun, gilman wrote:
> currently I take one 10/100 kick starter in the AM
> followed by one 25/100 CR, one eldepryl and 1 mg permax and one artane an
> hour and half later;
> four hours later I repeat one  25/100 CR, one eldepryl, and 1 mg permax;
> 3 -4 hours later I repeat all (except the eldepryl).
> My problem is I have (over the last 3 weeks) had a sudden increase in off
> time. I can't get out of a chair, have extreme bradykinesia, extreme
> stiffness and tremor. I don't have any dyskinesia. I have been on this
> regimen for approx. 4 years.
> I will be calling my neuro this week, I just would appreciate any thoughts
> you fellow PDers may have.
> I am also giving SERIOUS thought to a pallidotomy, if my insurance will
> cover some of it.
> Thank you for your advice.
> Bob  46/5 (had symptoms long before diagnosis)
>
>
Hello Bob, You asked for comments regarding your tablet schedule:-
there is quite a lot that I could say, because your schedule breaks
just about every rule that I have made in the process of treating
myself. Of course, that's Parkinson's for you: Your way may be the
best for you, but in case you are interested, I will very briefly
explain my philosophy.

1. A little levodopa taken frequently is much better than a large
dose, taken infrequently.  A large dose is OK while you are in the
earlier stages, but this may be the time when you begin to find out
that you need a re-think.

2. I am firmly opposed to 'Kick-starts' .Is your schedule so tight
that you cannot afford to wait another 10 minutes or so for your
regular meds to catch up?  Once again, you can get away with it in the
early days, but I believe you are moving into a different phase, and a
re-think is indicated.

If you wish to discuss my strange views in more detail, just say the
word. For those new to the list who may not know me (I have been very
quiet lately): I am 57, was diagnosed at age 39, but can identify the
earliest symptoms back to age 33.. I have been using levodopa as my
main support for 18 years, aided by a computer program which I wrote
in 1993, to help me get the best possible use from the drugs. I have
made a general offer to try to use this program to help people who are
having difficulty with their tablet schedules. The deal is: You maybe
get a better drugs schedule, and I find out how universal my program
is, ( Or not). Any takers?

Regards,
Brian.








  --
Brian Collins  <bjc@xxxxxxxxxxxxxxx>