Rayilyn Brown
Director AZNPF
Arizona Chapter National Parkinson Foundation
[log in to unmask]

--------------------------------------------------
From: "rayilynlee" <[log in to unmask]>
Sent: Monday, May 04, 2009 8:18 PM
To: "Scott E Antes" <[log in to unmask]>
Cc: <[log in to unmask]>
Subject: Re: DBS after Two Years

> thanks, Scott!! I just ordered a little pedaler for $7.99  plus S&H.  I 
> was going to get a big expensive one, but will see how this works out.  It 
> said you could also put it on a table and use it for your arms.  It had a 
> 5-1/2 star customer rating.
>
> bunions!!  our trials never cease!!  it's always something to give us a 
> challenge.
>
> Ray
>
> Rayilyn Brown
> Director AZNPF
> Arizona Chapter National Parkinson Foundation
> [log in to unmask]
>
> --------------------------------------------------
> From: "Scott E Antes" <[log in to unmask]>
> Sent: Monday, May 04, 2009 7:11 PM
> To: "rayilynlee" <[log in to unmask]>; "Parkinson's Information Exchange 
> Network" <[log in to unmask]>
> Cc: <[log in to unmask]>
> Subject: RE: DBS after Two Years
>
>> Hi Ray!
>>
>> Thanks a lot.  Like you, Laureen is glad she had the DBS surgery.  I'll 
>> keep you all posted as time goes on.  Yes, Laureen does have an exercise 
>> routine.  She was using the stationary bike, then she asked me to buy her 
>> this pedaler (I call it).  It's basically the bike pedals mounted on a 
>> little stand.  She can move it around, pedal while sitting in a chair 
>> watching TV, etc.
>>
>> Trouble is, her left foot hurts right now, so it's hard to use either. 
>> After several years of PD and walking funny, she developed a bunion on 
>> one foot.  Surgery fixed that, but now she's developed one on the other 
>> foot. It just adds to the difficulty walking, obviously.
>>
>> Still, Laureen is most often in great spirits.  As you said, having the 
>> tremors gone was worth the DBS.  And, since like you she doesn't take 
>> meds now (well, a tiny bit), those hard-to-bear dyskinesia are gone, too.
>>
>> Be well.  Scott
>>
>> Scott E. Antes
>> Northern Arizona University
>> Department of Anthropology
>> PO Box 15200
>> Flagstaff, AZ 86011
>> ________________________________________
>> From: rayilynlee [[log in to unmask]]
>> Sent: Monday, May 04, 2009 6:54 PM
>> To: Parkinson's Information Exchange Network
>> Cc: [log in to unmask]; Scott E Antes
>> Subject: Re: DBS after Two Years
>>
>> Scott and Laureen:
>>
>> Several months after I had my DBSs in summer of 2003 I started having
>> trouble speaking.  My neuro says it is due to the DBS and it has
>> gradually gotten worse.  I feel like I am strangling when I speak.   I'm
>> sorry to hear that Laureen is having the same trouble.
>>
>> I too have a hard time getting around and have to force myself to go out
>> now.  I don't take any meds.  I got worse after my fall last year.  I'm
>> finally trying to get back to the treadmill again because that helped me
>> walk better before.  I have to be so careful l don't fall again, my 
>> balance
>> is awful. I will "walk" in my pool when it heats up and am thinking about
>> getting a stationary bike as studies show that helps.  Does Laureen have 
>> an
>> exercise program?
>>
>> The DBS was worth it as the tremors drove me nuts, my ocular migraines 
>> are
>> gone, and I am never depressed despite everything.
>>
>> Ray
>>
>> Rayilyn Brown
>> Director AZNPF
>> Arizona Chapter National Parkinson Foundation
>> [log in to unmask]
>>
>> --------------------------------------------------
>> From: "Scott E Antes" <[log in to unmask]>
>> Sent: Sunday, May 03, 2009 3:19 PM
>> To: <[log in to unmask]>
>> Subject: DBS after Two Years
>>
>>> Hi All.  Since we have so many members asking or reporting about DBS, I
>>> wanted to comment.  Two years ago this summer Laureen had her DBS 
>>> surgery.
>>> After inital problems (nightmares?) with programming, she was doing 
>>> pretty
>>> well.  She was driving, shopping, visiting friends, etc.  Not that she 
>>> was
>>> back to "normal," but she certainly was doing light years better than
>>> before the surgery.  Oh yes, she was using the Nupro patch after 
>>> surgery,
>>> too.
>>>
>>> Almost two years later, she still is virtually tremor and diskynesia 
>>> free,
>>> taking almost no meds.  (Especially since Nupro was pulled from the
>>> market.)  *However*, her mobility is poor, and she sometimes (not 
>>> always)
>>> has difficulty speaking.  She doesn't go to the store (even with me) 
>>> very
>>> often, because she has a hard time getting around.  Even so, DBS has 
>>> made
>>> a significant and positive impact on her quality of life (and yes, on
>>> mine).  The Nupro seemed to make a postive difference, too, and we hope 
>>> it
>>> will be available again soon.  Be well.  Scott
>>>
>>> Scott E. Antes
>>> Northern Arizona University
>>> Department of Anthropology
>>> PO Box 15200
>>> Flagstaff, AZ 86011
>>> _______________________________________
>>>
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