>Date: Fri, 26 Mar 1999 10:18:34 -0800
>To: Ruth J Clark <[log in to unmask]>
>From: JaneRoss <[log in to unmask]>
>Subject: Re: LEVADOPA
>Cc:
>Bcc:
>X-Attachments:
>
>Dear Ruth,
>
>I'm going to answer your questions to the list because they are the same
>questions I get over and over.
>
>I have always been happy with the results of the surgery just not with
>finding out 6 months after I had it done that I was going to have to pay
>for it.  My insurance company failed to pay for the surgery (complicated
>story filled with a lot of frustration).  Maybe I am a little happier with
>it now that we have finished paying for it and can see the refund on this
>year taxes. (smile)
>
>The infusion study was a "blind" study so I don't have a lot of
>information to share.  I don't know how much levadopa was infused but it
>didn't feel like an excessive amount.
>
>It has been three years since the  surgery, the first year I tried to work
>with the sinemet but from that point I found I would rather have the
>residue of a tremor in my right hand rather than dyskinesia throughout my
>body, juggling  pills and worst of all avoiding protein.  The infusions
>were given as a drip over a two hour time period and they lasted between 5
>and 6 hours.
>
>Ruth, it truly is heaven to be freed from the medications.  All I take is
>1 mg of Mirapex twice a day along with high blood pressure medication.
>Hard to remember to take.
>
>Warning to anyone considering this surgery:  I got remarkable improvement,
>the best of all the patients I have met or heard about.  I want everyone
>to be free of the control that Parkinson's takes from you. but it is a
>risky surgery.
>
>I too wish they would approve the STN DBS.  I would not trade my surgery
>for one in the pallatal area even it took away the rest of my tremor.  Wow
>I just made an assumption that my surgery is in the thalamus area of my
>brain.  I still don't know where it is located.
>
>Hope this helps.
>
>
>>From: Ruth J Clark <[log in to unmask]>
>>
>>Jane,
>>
>>You were so good some time ago about answering my questions about STNDBS
>>that I have presumed upon you to answer again.  It seems at that time,
>>you were not real happy with it and I wonder if you are now. You say that
>>in the study  you had Levadopa "infusions". How were the infusions given
>>and how much?   during the year after the implants, what medicines were
>>you taking if not Levadopa? It sounds wonderful to me that one could go
>>without the terrible fluctuations we get from the long term use of
>>L-dopa. Right now, in order to get around, I'm having bad dyskenisia!
>>
>>It seems to me the implants would be my best hope, but few PWPs seem
>>interested.  I wish that it would get approved by FDA or that
>>Mayo-Jacksonville
>>would get the funding for the studies they want to do,as I could be a
>>part of that
>>study!
>>
>>Please let me know how you feel about the success of the implants in your
>>life and do you know how  successful they consider the study.?
>>
>>Ruth Clark
>>
>>___________________________________________________________________
>>You don't need to buy Internet access to use free Internet e-mail.
>>Get completely free e-mail from Juno at http://www.juno.com/getjuno.html
>>or call Juno at (800) 654-JUNO [654-5866]
>>
>>--GAAAA00164.922446451/m16.boston.juno.com--
>>
>>
>>--------- End forwarded message ----------
>>
>>___________________________________________________________________
>>You don't need to buy Internet access to use free Internet e-mail.
>>Get completely free e-mail from Juno at http://www.juno.com/getjuno.html
>>or call Juno at (800) 654-JUNO [654-5866]
>
>
>

jjjane

http://www.parkinsonalliance.net/medical/palross/palross.htm