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129 replies to this topic

#121 Linda Garren

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Posted 24 November 2014 - 08:01 AM

Linda, I've had dysphagia for 16 months. My MDS told me at my last visit he would not consider DBS for another two years, but said as soon as the pump is approved, I could have that.

I've had pretty severe depression and DBS can make that worse, thus the wait. DBS won't help my poor balance, so I would still use a walker and a wheelchair. It won't help the swallowing or the need for oxygen at night. Those muscles are already damaged. It would help with tremor, and dystonia, and perhaps dyskinesia because I wouldn't need as much Sinemet. Both DBS and the pump relieve on/off fluctuations.  That's a lot to keep straight, isn't it.  Are you able to take antidepressants to help with your depression? 

 

Julie and her husband and Michael (AB Normal) visited me over a month ago and we went out to dinner, but nobody thought to get pictures. Darn! Three Parkies with bad memories and a guy worried about his eyesight: none of us thought of it. Hopefully there will be more opportunities.  Yes--that would be so nice, wouldn't it.  I've thought of how much I'd love to fly out to see you, and it would be great to do it when the others are visiting, too.  I'd just love that.

 

In 2016, the International Park!.

Dianne


Age 68.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the various institutions.

Diagnosed with PD summer 2014. 

 

 

 

 

 


#122 musicman

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Posted 31 May 2015 - 09:18 AM

My lovely wife and I on our cruise last month

 

11196220_10200606017788374_5554050740585


Edited by musicman, 31 May 2015 - 09:19 AM.

Diagnosed 7/14 (age 57) by MDS and a DatScan. 

Began Azilect 8/6/2014

Started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#123 miracleseeker

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Posted 31 May 2015 - 10:05 AM

Your wife looks very sweet and supportive.  Her body language indicates she's very protective of you as well.  You are one lucky man!

 

 



#124 Linda Garren

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Posted 31 May 2015 - 10:12 AM

I couldn't agree more.  :-)   Very, very sweet-looking (and very loving) couple.  :-)


Age 68.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the various institutions.

Diagnosed with PD summer 2014. 

 

 

 

 

 


#125 SoCalGal

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Posted 31 May 2015 - 10:44 AM

Great picture,lovely wife! We are going on a cruise in August. It will be an international cruise. I am wondering how you spaced out your sinemet. Were you in different time zones? I am wondering if I get on each countries time zone as far as taking sinemet? Has anyone has this experience.? Thanks for any information

#126 Discovery

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Posted 31 May 2015 - 11:03 AM

Hi SoCalGal,

I would stay on your own time zone taking your meds. keep your clock the same as home...don't change your body timing for your meds...I would think it would create chaos ...may be wrong...

Just a suggestion....when I travel across the international dateline or time zones I keep my watch set to my own time to keep me on the straight and narrow for something as important as your meds...

I know Texas Tom also does a lot of international traveling he too may suggest something different and helpful...

Have a great time!! Wish I was going too:))

Laura
First symptom noticed was right arm bent at elbow - February 2014
Right arm and leg tremor, no arm swing - June 2014
Diagnosed with ET by GP - July 2014
Diagnosed with Early Parkinson by MDS - April 2015

Meds
1 mg of Rasagiline per day (Monotherapy)

#127 musicman

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Posted 31 May 2015 - 12:52 PM

Yeah, I wouldn't be messing with your med schedule.


Diagnosed 7/14 (age 57) by MDS and a DatScan. 

Began Azilect 8/6/2014

Started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#128 musicman

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Posted 31 May 2015 - 03:28 PM

Another picture from the cruise. This was "Dress in your favorite decade" night, and I was an 80's California surfer dude (in the blond wig and Hawaiian shirt). Wife was a hippy, and my daughter (above my wife) was a flapper with a fancy cigarette holder. We had a blast on that trip. Proof that you can have PD and still have fun!

 

cruisen_zpsyq7tahjy.jpg


Diagnosed 7/14 (age 57) by MDS and a DatScan. 

Began Azilect 8/6/2014

Started Sinemet 10/25/14.

 

https://www.youtube.com/acoustisongs


#129 Linda Garren

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Posted 31 May 2015 - 06:43 PM

What a great picture, MM.


Age 68.  Retired from Johns Hopkins University and Medical Institutions after 36 years in a number of administrative coordination positions within the various institutions.

Diagnosed with PD summer 2014. 

 

 

 

 

 


#130 swimmer

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Posted 31 May 2015 - 07:25 PM

Good pictures!  Thanks for sharing.  You can tell you were having fun


--Chris
Age 65, female

Diagnosed December 2013 @ 64 ---- no meds yet
2 years prior, experienced dizziness issues and extreme pain in shoulder & upper arm
tremor in right hand (same arm where shoulder pain was in)
handwriting darn near illegible.
difficulty in reading .. staying on one line
occasional toe cramping
unbalanced, but not falling
occasional muscle pain
some cognitive (multi-tasking, over organizing, remembering, spelling) and 'fuzzy brain' episodes
Exercising daily, primarily swimming accompanied by 1/2 hour in a warm water pool to do balancing and stretching

Daily: striving to accept what is ... and work with it




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