Parkinson's Disease Tulip


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Old 10-02-2006, 06:13 PM #31
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Default Before I forget again.....

Teresa!!!! So glad you found us! I was really missing your posts. If you do the DBS thing I will pray that it will be successful for you. (sorry I am so outspoken but I'm a little like Paula .."I gotta be me!" )
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Old 10-02-2006, 08:56 PM #32
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Default Why Dbs?

Dale ,its interesting that you have noticed a decline in your balance since dbs...i have noticed my balance has deteriorated since dbs too.I am unsure if its: (a) directly related to dbs; (b) the progression of pd; (c) always been an issue, but had been masked by other symptoms (dyskinesia ) pre- dbs; or (d) all of the above.My feeling is that its a combination of all of the above.
What it does do is raise the question:
Does the fact that post dbs i have worse balance than pre-dbs make my dbs a success or not?What defines a "successful" dbs?
Just as the disease effects each of us differently, so too the results of dbs are uniquely our own- I am aware of people who having had dbs are virtually unable to speak intelligibly- yet are delighted to be able to move and view their surgery as very successful. One man's success is often another man's disaster. In my case I am more than happy to "trade" poor balance for no dyskinesia, greatly reduced meds,and no on/offs, glad to read that you had a similiar outcome.
Cheers
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Old 10-02-2006, 09:07 PM #33
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Default

Quote:
Originally Posted by rosebud View Post
I don't like the dentist looking in my mouth, never mind drilling! I'm not there yet, but I really don't believe the day will come that I will ever allow another human being (or robot) near my head with a drill no matter how small the hole or promising the outcome. Where I live, I only know of one case that I would consider successful and she went elsewhere to have it done, and chose her team carefully, all of which cost a few peso's. I think I will be like the old Indian, who, when it was time to leave the planet, went and found a nice sunny rock to lie down on and give up the ghost.
I'm with CS on this one. I'm betting something else will get me first anyway. DBS is like the little girl with the curl: when it's good, it's very very good, but when it's bad....it's awful. But the funny thing is, GDNF also has an invasive delivery system, but based on its history so far, I'd consider that. Now why is that? Must be the marketing company
When I think of the two treatments I think that, to date, that I am aware of anyway..I think that a GDNF delivery system is alot more involved and complicated to install than a DBS, with the two pumps implanted in the abdomen and the catheters to the brain and all..When I think of having either procedure done on me..I'll tell y'all what..The dentist's office starts lookin a'might invitin' right 'bout then ah reckin....But thanks Dale for sharing your experience..It really sounds like it was smooth successful transition for you, and its good to hear that it still serves you well

What we know about GDNF is that it does grow new dopamine producing neuro-transmitters in the brain..And I often wonder what long term GDNF delivery therapy would accomplish..Im thinking..I wonder if in "X" amount of years if GDNF would grow enough new cells to have procedure reversed?
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK
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Old 10-02-2006, 09:58 PM #34
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Default Only the young.

When you are young, your chance of a successful DBS is excellent, but if you are older - my guess is over 60 - I think you run a huge risk that a DBS will make things much worse. It may make older brains confused and disconnected.

My brain is addled quite enough by Requip and cabi/levad. and Amantadine, but at least I have some control over the medicines I take. At my age the risk of DSB adversely and permanently affecting my thought process, muddling my reasoning and impeding my speech is much too real.

And anyway, even if I were very young, and even if DBS was 100% guaranteed to help without any risk whatsoever, I'd still not be brave enough to have holes drilled in my head and wires inserted in my brain.
I really admire all of you who have, or plan to have DBS. You have great courage, and I wish you all great success.

birte
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