Terri

I've been thinking a lot about what you said in your email re how you
handled PD at such a young age with family, etc.  I can certainly understand
your retirement from  brain surgery after so many as I've had lots of
surgery. I don't want any more surgery period, especially not brain surgery.

I can only admire you getting PD so young and not wanting your kids to know
you as disabled.  I got PD at the "average age" of 60 and have no children,
was never really helped by meds so there was no masking it.     I guess
there are times in our lives when we are forced to reassess our purpose and
attitude.  The times when life does not turn out as we had imagined or
planned. I do that periodically anyway.  I'm 71 now and have pretty much
plateaued re symptoms.....so I'm looking for new purpose within my
situation.  52 seems awfully young to me now and I can't help but believe
you will find a new way to keep on keeping on.

Your grandson must be a real comfort (and a cutie-pie) and it sounds like
you have great family support.    Congratulations on successfully raising
such a fine family.   I would think that other List members would benefit
greatly from hearing about your journey with PD.   Please keep us posted -
???? or not.
Ray
Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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----- Original Message -----
From: "Terrie Starr" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, August 28, 2007 5:13 AM
Subject: Re: DBS - dual control IPG


> Ray,
> I don't know what's up with all the question marks.? I must have a
> poltergeist in my computer.? The doctors, actually, opted against the
> Kinetra.? Having separate IGs allows for more options in programability.?
> After having 5 different brain surgeries, I think I'm about as bionic as I
> can get.? I did have the IPG and wires and leads removed from? previous
> DBS done in 2000.? That was a particularly grueling procedure that took 5
> hours instead of the anticipated 2.? There was so much scar tissure built
> up that they ended up leaving the old wires in place and just added new
> ones.? I must admit that although I have been fearless up until now, I do
> know my limits and I'm now officially retired from brain surgery.? At 52,
> I'm finally being to feel my own mortality. You know, I demand an
> unrealistic expectation of my functional level, in an attempt to live my
> life on my terms - with as normal a functional level as possible.? John
> and I have 5 children and one grandchild and I refus!
> ed to have them remember me as handicapped.? This attitude has kept me
> from going nuts after 25 years of PD. My children were 4 and 7 when I
> developed PD.? We never made PD a major issue in our lives because I
> didn't want them to grow up with the memory of PD being a major presence
> in my life or theirs, rather that it was just a part of an ordinary life.?
> I hope all this makes sense to you.
> My 22 month old grandson has learned how to notice when I need help
> getting out of the recliner
> and will casually walk over and offer his arm in an attempt to help me up.
>
> Terrie
> From: rayilynlee <[log in to unmask]>
> To: [log in to unmask]
> Sent: Mon, 27 Aug 2007 11:50 pm
> Subject: Re: DBS - dual control IPG
>
>
> Terri?
> You mentioned not opting for the dual control IPG - if I remember
> correctly?
> it is because with a bilateral DBS the leads that go under scalp and neck?
> and into the chest would have to be removed which is kind of a dicey?
> procedure and they don't like to do that. I always wondered just how they?
> maneuvered them down to my chest.?
> ?
> Boy, have you been through the mill, girl.?
> I am in awe of your courage and wish you the best.?
> Ray?
> Rayilyn Brown?
> Board Member AZNPF?
> Arizona Chapter National Parkinson's Foundation?
> [log in to unmask]
> ----- Original Message -----?
> From: "Terrie Starr" <[log in to unmask]>?
> To: <[log in to unmask]>?
> Sent: Sunday, August 26, 2007 5:46 AM?
> Subject: Re: DBS - your experiences?
> ?
>> Les,?
>>?
>> Hi, I am a 52 year old female with PD for 25 years.? I have?
>> everything?EXCEPT tremor.? I have included a copy of an email that I
>> sent?
>> another PD member explainig my history.? I thought it would be easier
>> than?
>> typing it all again.? The update on what you will read below is as?
>> follows:? I have currently cut my Sinemet intake by 50%, my dyskinesia
>> is?
>> gone and the dystonia in my right hand is 75% gone.? I played golf?
>> yesterday.? Before surgery I could only play every other hole and not?
>> without taking Sinemet throughout the?course.Yesterday I played 9 holes?
>> consecutively with no Sinemet.? Surgery did NOT impair my speech.?
>>?
>> ??
>>?
>> In 1993 I had a left brain pallidotomy for the right side of my body.? A?
>> very small lesion was burned in the globus pallidum.? At that time, I
>> had?
>> no significant PD symptoms on the left side of my body. Before the?
>> pallidotomy I was severely impaired with bradykinesia, freezing,?
>> micrographia (Interesting because I am left-handed.), balance, decreased?
>> arm swing and dragging my right foot.? THe medication was causing
>> constant?
>> dyskinesia, which was worse than the PD symptoms, at least they were
>> more?
>> noticeable as well as painful. I became anorexic because the
>> dyskinesia???
>> prevented me from eating and when I did, I quickly burned off the?
>> calories.? The pallidotomy was a dramatic success! For about 7 years, it?
>> improved my symptoms, I could decrease my Sinemet and had virtually no?
>> problem with dykinesia.? I functioned almost normally.? The one negative?
>> thing caused by the? pallidotomy was that it caused an "on" dystonia in
>> my?
>> right hand.? It was only present when I took my meds.?
>>?
>> ??
>>?
>> By 2000, many stressors and many years later, the pallidotomy was no?
>> longer giving me the benefit that I desired to function"normally".The?
>> medication induced dystonia in my right hand was worse, as were all??of
>> my?
>> previous symptoms.? Still, I did not feel that the left side of my body?
>> was affected as badly as the right side.? The doctors and I elected to
>> try?
>> DBS on the same side that the pallidotomy was? performed on - the left?
>> brain, right body. So, in Sept. 2000, I was? mapped again and had DBS?
>> implanted - Medronics device.? Two months later, the wires connecting my?
>> IPG broke. So I went back to have the hardware replaced.? AT that time
>> Dr.?
>> Vitek was not happy with his targeting and felt that better placement?
>> could be found through further mapping. Remember that these were the
>> early?
>> days of DBS. I received minor benefits but nothing earthshattering.? My?
>> husband noticed more improvement than I did.? Because of the placement
>> of?
>> the leads, we were never able to adjust my volta!?
>> ge any higher than 1.1.? To do so would cause uncontrollable crying and?
>> irratic motor response.?
>>?
>> Dr. Vitek wanted to remap and move the leads.? I was not interested at?
>> that time.? I decided to leave well enough alone and wait for a time
>> when?
>> I felt that I could maximize my benefits through more advanced
>> techniques.?
>>?
>> ??
>>?
>> Now we are up to 2007 - PD symptoms were equally bad on left and right.?
>> sides? Medication induced dyskinesia, dystonia, you name it I had it. I?
>> felt it was time for intervention again -??? I? had??? become a
>> grandma -?
>> I was taking sinemet every 2 hours round the clock.? So, I went back to?
>> Dr. Vitek because he had mapped my brain and knew my history better than?
>> anyone else.? He also knows how unrealistically I expect my functional?
>> level to be in spite of?? PD.?
>>?
>> ??
>>?
>> Dr. VItek, Dr. Andre Machado and my husband and I formed a game plan.?
>> The?
>> plan involved multi-parts because I live in South Carolina, 12 hours
>> from?
>> Cleveland.June 25th I had the right brain(new side)?mapped and wired for?
>> DBS.I did not have the IPG implanted at that time.I did, however, have
>> the?
>> lead pulled from the brain and the?wires disconnected from the IPG on?
>> the?
>> left side (original side). I returned home for 6 weeks. Aug 1, I
>> returned?
>> to Cleveland and had the left brain remapped and the lead dropped in a?
>> more desirable?location. I was discharged from the hospital the next day?
>> and spent 4 days in Cleveland sightseeing.??Aug 7th?I returned to the?
>> hospital for what was supposed to be?outpatient surgery to implant 2
>> IPGs,?
>> 1 on each side of my chest (they replaced the original one).? At that
>> time?
>> they attempted to remove the old wires and replace them with new ones.?
>> There was a lot of scar tissue, too much to? safely remove without
>> making?
>> very large incisions.? They left s!?
>> ome of original wires in and added new ones.?
>>?
>> ??
>>?
>> As far as compatibility:? My husband explains it like this - 2000 Jeep?
>> parts probably won't fit? 2007 Jeep.?
>>?
>> The devices used are Medtronics.?
>>?
>> Aug 8th, I was discharged from hospital and went to see programmer.? She?
>> turned on and programmed ?both sides..? I am still at a very low voltage?
>> for now - under 2 volts.? The original? side was turned on at a very low?
>> voltage because of the swelling.? It can be adjusted later.? I will
>> follow?
>> up with a programmer,?Robert?Baumgardner, ?at Emory University in
>> Atlanta?
>> for fine tuning.? He will work with Dr. Vitek as needed.? Dr. Vitek is
>> the?
>> one that hired him.?
>>?
>> ??
>>?
>> We discussed using the dual contolled IPG but I honestly can't remember?
>> why it was decided not to.? My husband said it was due to battery life
>> and?
>> the fact that there was no option for bipolar on one and mono polar on
>> the?
>> other.?
>>?
>> ??
>>?
>> If you are interested in knowing me better, google me as Terrie
>> Whitling.??
>> There are still a few articles?
>>?
>> on the web from the 90's.?
>>?
>> ??
>>?
>> John's timeline:?
>>?
>> June 25th - old side removed , new side installed?
>>?
>> Aug 1 - Old side installed with new leads for better placement?
>>?
>> Aug 7- old IPG wires removed 2 new PGs installed and new wires run?
>>?
>>?
>>?
>> Terrie Starr?
>>?
>>?
>> ________________________________________________________________________?
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